Spotlight
An Interview with Patricia Nalls
By Aarti Jhaveri & Nalini Tiwari
June 8, 2006 
In a brave response to the lack of HIV/AIDS support groups tailored for women, Patricia Nalls put out a single flyer in her doctor's office almost a decade ago. Today, Pat heads The Women's Collective, a Washington DC group with a full time staff of fifteen, along with twenty part-time peer educators. In addition to serving over 600 women living with HIV/AIDS, The Women's Collective also works on educating thousands of women on prevention strategies. As a result of their success, The Women's Collective model has been shared with international activists from Ukraine, Guyana, Spain and Brazil. Pat, who is of South Asian and Guyanese descent, was diagnosed with AIDS in 1986 and founded The Women's Collective after the death of her husband and three-year-old child.
For our spotlight, Pat takes time to speak with Aarti and Nalini about living with HIV/AIDS, the South Asian community, her sources of inspiration and long term goals for The Women's Collective.
What sort of background did you come from and how did that contribute to your approach in starting The Women's Collective?
Well, I came from a very strict background. My parents were very hard working. My mom was kind of an entrepreneur and my dad a registered nurse. When I was 16, my dad moved to America from Guyana. A year later, he sent for us and I went to high school here, in New York. My parents were very scared of America...they were very isolated. Back in Guyana, my mom was marriedyou know, the whole arranged thingand had me at 16. By the time I was 9 months old, she was divorced [Pat's mom remarried]. In that place and time, it was really hard for her to do that. I think she's where I got my fighting spirit.
So your mom's a strong role model?
Yes, she is. In a way, it's her work ethic that influenced mine in starting and developing The Women's Collective.
Do your children [Alana, 27 and Shawn, 22] play a role in your advocacy efforts?
When I was first diagnosed, I was very protective, like most moms are about their kids. It took me awhile but I kept my kids in the background. I didn't want them to be stigmatized. Actually, my daughter who graduated from graduate school a couple of years ago worked here [at The Women's Collective] as the HR person until a year ago...although she had to cut the navel cord! [laughs] Now she's got a wonderful job in Virginia but she's still very knowledgeable about HIV and is still involved with The Women's Collective. I have a son who is at Temple University and he also works here whenever he's on break.
What's your relationship with your mother and extended family like?
My mother is really proud of me. She lives in Maryland and helps out with some volunteer work at The Women's Collective. But we don't really talk about my living with AIDS. It's the same with my extended family. Some members of my extended family still don't know that I'm living with AIDS.
Because sex is such a culturally taboo subject within the South Asian-American community, how do we start dialogue?
Well, it's something I never grew up talking about. Can I do that? It's still fairly uncomfortable. But that's what we have the prevention arm of The Women's Collective for. It's a matter of finding those one or two South Asian women who aren't uncomfortable and getting them to talk. You have to tap into the few that are willing. And if people are uncomfortable talking to their family members, maybe they can start by talking to other South Asians that aren't necessarily related.
When it comes to HIV/AIDS support groups, are there methods you've used in DC that can be applied to the South Asian community?
First of all, I have to say I did not plan on starting an agency. After my diagnosis, after isolation, after they told me I had less than two years to live, I often felt that I was the only woman going through this. I wanted to meet some other women. So I put a flyer in my doctor's office for women interested in talking. It always started out with telephone conversations and eventually we'd agree to meet in a coffee shop. After that I started a group at home. Mine was the only group that said "bring your kids." It was a great way for the kids to get to know each other too.
So in a way, I was providing case management out of my home. Back then, resources didn't exist for women. We basically started a small network, where we would pick each other up from the doctor's office, in case there was bad news that day. I don't see why the same methods wouldn't work for the South Asian community. I'm of South Asian descent and it worked for me. There are issues, though, that are specific to us. For example, I wouldn't want anyone outside of my immediate family to know because it makes it a lot harder for my extended family... I'd be thinking, "Will anyone want to marry into my family?"
After speaking at various health forums and panels, what sort of a trend do you see amongst the South Asian-American community, when it comes to their attitudes towards HIV/AIDS?
You know what? I don't see the South Asians with HIV and it gets to me. It's crucial that agencies that receive funding for Asian & Pacific Islanders with HIV/AIDS hire more South Asians to fill their leadership positions. We need to see people who look like us up there. The reality is though, we don't want to be lumped togetherSouth Asians do not see themselves as East Asians.
Though your organization focuses on women, what sort of roles do you encourage men to play in supporting their partners?
Well, unfortunately, most of the women who come to us are single heads of households. And the few women who do have partners haven't necessarily disclosed the information to their partners. Though we do encourage men to become involved in our self-esteem building activities, and urge them to get tested in our mobile units, we don't push it because part of the reason that women come to us is because they feel safe. We really want to build the infrastructure to fit the needs of these women, and walking into a room full of men may not be fulfilling these needs for them.
What keeps you motivated?
My children, definitely. They've always been extremely supportive.
What is your vision for The Women's Collective?
We have two new initiatives coming. First, we're launching a national policy advocacy group for women with HIV/AIDS because nothing like that exists right now. And secondly, we're writing a training guide for individuals who want to start similar groupsthe objective is to go national and then global. Ultimately, the long-term goal is to start a medical clinic that deals with HIV/AIDS treatment.
Find out more about Patricia Nalls and The Women's Collective at www.womenscollective.org
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