Bernadette Berzoza’s urban Denver community is a planet away from the historic HIV women’s summit that took place in Nairobi, Kenya last week. But
many of the issues plaguing her predominantly Latina and African-American neighbors are the same, from gender-based violence and isolation to a shortage of information about sexual health. Through Sisters of Color United in Education (SCUE), an organization that she co-founded in 1991 along with Belinda Garcia, Berzoza, 44, works to ensure that women get the right facts about HIV and have access to life-saving resources.
What was your first encounter with HIV? My husband was an IV drug user. He was diagnosed with HIV in 1989, and I was diagnosed soon after that. Back then, women were barely starting to show up on the radar for contracting HIV. I didn’t know what to do about it, so I just kind of acted like it wasn’t happening. I was working three jobs to support my family and my husband was still using drugs. I had a three-year-old and a four-year-old at the time. And I didn’t tell any of my family I had HIV—the only people that knew were my husband, the doctor, the outreach worker and me.
How did you get involved in your community? I was actually seeking information for myself. I was living in a housing development, and there was a program that was doing education around substance abuse. Because of my interest, I was asked to do outreach in the community on HIV/AIDS, and I started going to the libraries to find out more and more about HIV to educate others—still without telling people that I was infected.
When did you disclose? After my husband passed away in 1995, I disclosed to my kids. In 1996, I started to do speaking engagements in the outer parts of the city, talking to young women about sexuality, sexually transmitted diseases, trust issues, relationships and negotiation.
My motivation was that I didn’t want anybody to have to go through what I did. I went to conferences and workshops where I heard people say that HIV had been a blessing that had changed their lives. I could never say that. It’s not a blessing for me. The hardest thing I’ve ever had to do is live with this virus.
How did Sisters of Color United for Education come about? In the beginning, when I started to get information for myself, there were programs predominantly for men who have sex with men or for substance abusers, and I didn’t feel like I fit in anywhere. Then I started meeting other women who had gotten infected by their partners or husbands, and that’s when we started to hold our own little support groups. We were using the recreation center in my housing community to hold meetings.
What else does SCUE offer now besides general support? We have intergenerational groups, where grandparents come with their grandchildren or mothers with their daughters to talk about these things. We have a project for HIV-positive Latinas and Latinos who need mental health services. Then there’s our promotora program, where people get trained in health issues that affect our community. They get a certificate to become the resource in their family or neighborhood. About 900 people have been trained as promotoras. Our program started by serving 12 to 15 people; now we serve at least 3,000 people.
How do you target the Latina community beyond simply offering bilingual materials? I’m Latina and Xicana (the original spelling of Chicana), and I grew up in a community where HIV wasn’t talked about. Women need to be aware that they’re at risk, and they need culturally relevant messages. Spanish dialogue is different for all the different types of ethnic groups—there might be Spanish speakers from Mexico, South America or Guatemala, and people interpret things differently. So there might be fliers and brochures that are in Spanish, but they’re not culturally sensitive or aimed or geared at all those communities. We worked a lot to get our state health department to realize this.
What drives you to keep doing this work? Well, I didn’t think I was at risk, so how many other women are in the same predicament? See, I grew up around violence. I grew up around substance abuse. I grew up around poverty. These things didn’t seem like “risks,” you know what I mean? I saw other people survive them, and they still got up and went to work, and they still raised their families. It was just life. And then I became infected, and I was like, How did this happen? Why wasn’t there somebody there to tell me about the risks so that I wouldn’t be in this predicament? And that’s when I made a vow to myself that if I’m still here in 10 years, I’m going to do everything in my power to not see another woman walking in these shoes.
"I am psychologically suffering from body wasting, mainly hips, face, legs and arms. Does anyone know where I can order something (maybe underwear with foam) to fill the sunken hips, so that pants can start looking normal? I feel pathetic when I look at myself in the mirror in jeans—jeans used to fill up so nicely, now they just hang!"
