Interview: Susan Rodriguez

Why do you think the Memorial is so important?

This is a project that is long overdue. When you’re in the trenches during the week, you’re not thinking about the past and memorializing those we’ve lost, but New York City is an AIDS epicenter, with a unique history. It’s important that we remember. New York City is still America’s epicenter for women living with HIV, and this memorial will bring us all together, all the groups that have been affected.

Tell us a little about your history with the AIDS epidemic.

I didn’t pay too much attention to AIDS in the early years. I was in college, in the theater department, so I was aware of this disease affecting gay men. It made me very sad to see people getting sick and dying from this unknown disease. I never thought I would be at risk, a woman in a long-term heterosexual relationship. I was thinking about having children. When my husband died in 1996, I didn’t know anything about the disease. It was a big learning curve for me. I was working in the corporate world, taking care of my kids. When I tested positive, I had my three children tested, and my middle child was positive, too. She was three and a half. It was devastating, but it sprang me into action to learn as much as I could. At that time, there was very little information for women. The diagnosis took my power and control away, but I got it back. I found information. I met a lot of activists, and I connected with a women’s group at the PWA Health Group where I also helped found a pediatric workgroup. I was also a part of the People With AIDS Coalition and other groups. I found a lot divisiveness, which I wasn’t used to. We should have all been working together. The NYC AIDS Memorial is unifying us now. We’re working together not to forget, but also to create a learning tool for present and future generations.

Who or what will you be remembering at the Memorial?

Wow. A lot of very dear and close friends. There are a lot of people I miss, including my husband, and John Falkenberg, who was my mentor. I wouldn’t be alive without him, and SMART wouldn’t exist. John could break down all the medical and health information in ways I could understand. He had a major influence on my life. He helped me start a pediatric working group for parents to get information for their children.

Is HIV still affecting women in NYC?

It is! The epidemic in NYC mirrors some sub-Saharan African countries. At SMART, we help people make informed decisions, so they can stay healthy. A lot of the women who come here were like me; they didn’t know they were at risk for HIV. It’s really important that a place like SMART provides a supportive community for women, especially women who have experienced the trauma of gender-based violence. These women don’t feel like they have any control over their lives. We are a community that recognizes and reflects their worth, a very important key to the equation. Interpersonal violence affects their choices now and in the future, and raises their risk for HIV, STD’s, unplanned pregnancy and rape.

What can be done to make a difference now?

Projects like the NYC AIDS Memorial go a long way in changing the complacency that has risen around HIV/AIDS. It also gives hope to small organization like ours, and helps to raise our profile. We are still in the trenches doing the work, which evolves from our base – women and youth. HIV is our entry point, but we look at the community holistically, paying attention to other chronic diseases that affect low-income women of color. We also advocate for the decriminalization of HIV at the state and national level, which will reduce stigma and encourage more people to get tested. We need to come to terms with these issues to move forward in the 21st century in addressing this epidemic.

Founded in 1998, SMART is New York City’s premier community-based HIV treatment education organization run by and for HIV+ women. Its mission is to provide comprehensive HIV treatment education and a supportive peer community to ensure that women and youth living with or affected by HIV/AIDS are able to live longer, healthier, and empowered lives. For more information, or to get a free copy of their cookbook, go to smartuniversity.org.

Susan Rodriguez is the Founding Director of Sisterhood Mobilized for AIDS/HIV Research & Treatment (SMART) and a former NYC AIDS Memorial Board Member.