Grassroots HIV/AIDS Advocate for Women Greatly Expands Her Work

    • September 6, 2011

Just back from a Washington, D.C., gathering of HIV/AIDS activists on how to make sure policies that will help women are included in the new National HIV/AIDS Strategy, Susan Rodriguez moves on to her next pressing project—helping her staff get comfortable in her agency’s new home. In July, Rodriguez’s brainchild, Sisterhood Mobilized for HIV/AIDS Research and Treatment (SMART), moved into new digs at Bailey House’s Rand Harlan Center for Housing, Wellness and Community in East Harlem, where SMART was founded in 1998. The facility is a significant upgrade for SMART. It includes a state-of-the-art computer center, large pantry space and classrooms with an array of audio visual support.

Such is an activists’ life, one Rodriguez, a 2010 Robert Wood Johnson Foundation (RWJF) Community Health Leader (CHL), took on 13 years ago when she co-founded SMART, a women-led, free program for women and youth living with or affected by HIV/AIDS. Her motivation to address the unique issues and support needed for women living with HIV/AIDS came after her own diagnosis in 1995, when her husband first tested positive for HIV/AIDS and passed away in 1996. At that time, Rodriguez also learned that HIV had been passed (during pregnancy) to her daughter Christina, who was then 4 years old. Now 19, Christina is following in her mom’s footsteps. She co-founded SMART Youth in 2005.

Reaching Out to a Community of Women

“SMART came from my personal experience of feeling isolated, powerless and unable to understand the complicated medical terminology, research and complex treatments that are a part of the HIV/AIDS world,” Rodriguez says. “I had no medical background, so it was basically a foreign language to me and I had to learn it at breakneck speed in order to make informed decisions with my doctor about my health and treatment.”

RWJF Community Health All-Stars
Robert Wood Johnson Foundation scholars, fellows and grantees, along with the Community Health Leader award winners, address the health needs of the nation in unique and innovative ways. Whether they are creating healthier environments, bringing needed health resources to underserved communities, diversifying the local health care workforce or generating grassroots programs—they make a difference. This series tells their stories.

But Rodriguez did exactly that, and put a plan in motion to educate other women through SMART, which offers treatment education programs, as well as courses in art, nutrition, healthy cooking and computer technology to a collection of loyal students who have found hope and community in the program.

Rodriguez’s passion has not only kept SMART going, but it led to the program’s current expansion. “We are very excited about our move to Bailey House and returning to East Harlem,” Rodriguez says. “The collaboration between Bailey House and SMART will enable us to create cost effective, replicable models of care that address the unique needs of HIV positive women. We envision a new phase of robust growth for all of our women's programs, as well as our SMART Youth program, as we establish new connections in the community and strengthen our existing ones,” she says.

One special focus is the SMART Body program, a nutrition and healthy eating course created, in part, with RWJF funding. In addition to teaching SMART participants how to make health-saving, delicious meals, a cookbook project is in the works. “A good part of my attention is focused on ways to provide nutrition and access to healthy, fresh food for all, but particularly people in low-income communities,” Rodriguez says.

Of her participation in the CHL program, Rodriguez adds, “winning the Community Health Leader Award was an unbelievable and amazing thing to happen for me since I had been working in this field for almost 15 years by that time. The award has been pivotal in my work this past year. In addition to the financial support from RWJF, I have been connected to some pretty incredible people around the country who are part of the RWJF/CHL family and have provided invaluable support, guidance and information. The award breathed new life into my work as it opened up new doors and opportunities to sustain my vision and turn my ideas into reality.”

And the women who have become a part of SMART, like Evelyn L. (she prefers to use only her first name) greatly appreciate that vision. A SMART participant for four years, Evelyn was initially looking for an intimate group of women to share her experiences with. She soon began volunteering, was dean of students for a couple of years, and is now a mentor in the cooking classes.

“I wasn't motivated at that time to cook,” says the Brooklyn native, who was diagnosed with HIV in 2003. “But now, I’m fearless in the kitchen!” She’s a whiz at making dressings and cooks healthy, flavorful recipes at home. Even more, Evelyn enjoys bonding with other women and hopes to one day to help other women as Rodriguez has.

“Susan has made an awesome program for the ladies,” Evelyn says. “She preaches out of experience and that touches me. So now I'm trying to do it. She has the strength and she's been there, so why not me?”

Manhattan resident Alicia Reid, who watched SMART grow from its humble beginnings, says she considers the organization her family. “I'm glad it’s something just for women so we can be ourselves. It really stimulates people's knowledge and gets people out of their comfort zone.”

A New Focus on Policy
While SMART’s Harlem initiative thrives; Rodriguez is taking a broader approach to advocacy. She left her meetings in Washington, D.C., this August hopeful and passionate, but frustrated. Mainly because she says the National HIV/AIDS Strategy has ignored women and the comprehensive recommendations set forth by women’s groups in its operational plan.

“I hope through advocacy at the local level, starting with our own advocacy arm, SASI (SMART Action Sisters Involved), we can start making our voices heard loud and clear,” Rodriguez says. “I am so disgusted with how the political rhetoric has set women back in terms of resources and care.”

But she vows to be part of the change. And it’s likely her children, HIV/AIDS advocates in their own right, will be too. Daughters Christina and Samantha co-founded SMART Youth in 2005 for youth aged 13 to 22 living with or affected by the illness. They’re harnessing the power of social media to spread their message and becoming a voice for youth on a global level. In June, Christina sat on a panel at a United Nations Conference marking the 30th anniversary of the HIV/AIDS epidemic.

In addition to continuing to be a role model for her family, Rodriguez says future agenda items include keeping SMART University up and running during these tough economic times and delving into the role violence plays in the lives of HIV-affected women.

“The fact that we are still around as an organization that is led by and for women and youth living with or affected by HIV/AIDS is our greatest accomplishment,” Rodriguez says. “My driving force now is to make the health issues surrounding low-income women of color a priority in this country.”

Each year, the Robert Wood Johnson Foundation selects 10 Community Health Leaders to receive an award. The winners are outstanding and otherwise unrecognized individuals who overcome daunting odds to expand access to health care and social services to underserved populations in communities across the United States. The program aims to elevate the work of these unsung heroes through enhanced recognition, technical assistance and leadership development opportunities.