September 30, 2007

Sylvia Young

Latina Peer Advocate at WORLD (Women Organized to Respond to Life-Threatening Diseases), Oakland

Sylvia Young is all too familiar with the isolation many HIV-positive women experience. For four years after her diagnosis, she suffered in silence. It wasn’t until she met with a peer advocate that she began talking about her struggle with the virus. Now she is a peer advocate for the organization that first inspired her to break her silence. At WORLD—Women Organized to Respond to Life-Threatening Diseases—Sylvia Young takes both a micro and macro view of the challenges women with HIV face. She confronts the particular, day-to-day needs of positive women, and at the same time tries to change the way people think about—or don’t think about—women with HIV. WORLD, one of the oldest organizations for women with HIV, gives her a solid place to do all that.

What led you to WORLD?

I was diagnosed in ’95 and the social worker at the medical clinic where I was getting my care said, “You need to meet another woman [with HIV].” But I didn’t do that until ’99 or 2000. I wasn’t ready to confront the idea of living with the virus. Finally, I met a Latina peer advocate with WORLD—I’m Mexican American—and I thought, “I can’t believe this woman, she’s so pretty, how can she have this disease?”

Was that when you began working at WORLD?

No, at first I went into teaching in a middle school here in Oakland. But the stress of teaching and the fatigue of living with the virus—I couldn’t do it. I had to leave teaching.

I didn’t work for a couple of years. I kept going to WORLD support groups and twice-yearly retreats, and I continued to see my peer advocate once a month. She knew I missed teaching, and she suggested that I teach other women how to live with HIV. So in 2003 I became a peer advocate at WORLD, working with pregnant women. That was great for me. I loved interacting with women who, like me, have the virus. I helped positive pregnant women with referrals— let’s say, to the children’s hospital here in Oakland—and with questions of confidentiality. For example, if a woman had not disclosed to family members, she and I would talk about preparing a letter for the day of delivery, to hand to the doctor and nurses, explaining her status and her wish not to disclose to the family members present.

Then I was offered the job of Latina peer advocate, because I’m bilingual. I continue to help women deal emotionally with being positive, and with clinic visits and [med] side effects. I help them understand that yes, there are side effects, but they do go away in a while, and there are things you can do to alleviate them. I help them understand that this is a chronic disease that’s managed now, that we don’t die from this anymore. I may go with a client on clinic visits, because maybe there’s something she doesn’t understand, and she’ll look at me and I can put it in layman’s language. Because doctors sometimes don’t have the time.

What special challenges do HIV-positive Latina women face?

The language barrier. If they’re undocumented, the fear of being deported. Under federal laws and regulations, there’s no turning away anybody in a county hospital, but for undocumented women, there’s still the fear that if they leave the United States and go back to Mexico, for example, they can’t get their medication. So they have to stay here and work and maybe not see the children they left behind for 10 years. There’s also the challenge of helping them understand that they have to take care of themselves. They have to adhere to their medications or they can get sick. There is a thing about self-care: We’re women. We’re daughters, we’re moms, we’re grandmas, but we have to take care of ourselves, too.

What is WORLD doing to reach more women with HIV?

The Lotus Project, which WORLD is doing in collaboration with the Center for Health Training, is in its third year and is funded by a five-year grant from the Health Resources Services Administration. It’s a national peer-advocate training program. We’ve been to cities around the country and we’ve trained 90 to 100 women. The project is a response to the fact that more and more women are becoming infected, and it’s about empowering them and encouraging them to take this message of empowerment out to other women who are isolated and depressed. And they have changed their lives—some have gone back to school, some have disclosed [their HIV status].

We have another program, LINCS, [where we] go out and find women who have fallen out of care—whether they’re abusing substances or in isolation—and we bring them back.  

And on November 30, the day before World AIDS Day, we’re having a Women and HIV Summit in Oakland. There hasn’t been a summit for HIV-positive women in the States in about 10 years, and we don’t want to let these women fall under the radar.

Can you think of a woman whose life the LOTUS Project really changed?

It was in Atlanta. One woman was having a really hard time disclosing to her children. The program ended on Friday evening, and by the following Monday, she had disclosed to her oldest son. It was really heartbreaking for her to tell him, but with the training, she was able to do it. The stigma that’s attached to this disease interferes with us disclosing to our children and family members, because, with women, it’s “Who have you been sleeping with?” Things like that.

Do you think that creates extra stigma for positive women?

With a woman, it’s all about, “How did you get it, what were you doing?” People assume you’ve been promiscuous. For example, I was at the doctor’s office once, and the doctor asked me how I got HIV. It had nothing to do with what was going on. What does it matter? I had one partner, and for a lot of my clients it was the same.

What makes your work hard?

Not taking anything home, for me. Sorry if my voice cracks here—but it’s just hard sometimes. We hear stories and we relate them to how we’ve been. I’m a survivor of domestic violence, and if I talk to a woman who’s having issues with domestic violence, I go back in my mind. I have to stop myself: “Look, Sylvia, this isn’t you. This is this client. Step back.” So that’s a countertransference: You take things in, and you relate to them, but you also have to say, “That’s not me anymore.” We learn how to talk to our clients—what to say, what not to say, and that silence is fine too.

It’s also hard to see women who are living in denial of the fact that they’re positive. It’s hard for them to face it, and maybe they’re using substances to numb themselves. As I tell my husband, I work in the trenches.

What are the greatest rewards of your work?

Seeing a woman blossom. I have a client who came in crying. She handed me her referral card and then she sat down and cried her eyes out. By God, within a couple of months, she was doing what she had to do to take care of her family and herself, saying, “Look, this is what has come into my life, but I’ve met another woman like me, living with the virus, who is secure in her life.” A lot of women are isolated, but we see them change. That’s a great reward.

For more information on WORLD, visit http://womenhiv.org/.

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