Building Support Systems for Women Living With HIV in the 1980s
September 19, 2012
Can you tell me about that first conversation that you had? Was that the first time you connected with another woman living with HIV?
The first time the phone rang, it was shocking. I didn't answer it. Then, eventually, I picked it up. It was a woman who had seen the flyer. She was crying hysterically -- she was in crisis. I shared my own story, told her how I've gotten to where I am, which was still very sick. But also told her that we can talk. I remember telling her, "You will be OK."
We also talked about our issues around children. We talked about what kinds of things we can do. "You're having these really bad side effects to this medicine. Here are some of the things that I did that made things better for me." She also wanted services. So I told her which place provides what in her area. "Here is the place that provides services in this area."
How would you describe the quality of the services for women that the agency in your area provided?
So many of us went to the same agency for care, because it was the only shop in town at the time. They were good, but services for women were really nonexistent and they really didn't understand what women needed sometimes.
For example, if you needed food, the agency would give food to a person with AIDS. Well, it was fine for the guys. But for women, what we literally did was take the food and give it to our babies. We didn't eat. There were women, I would say, who died from starvation, and not AIDS, because they would just give the food to their babies because they had no food.
Think about transportation. When they went to these places to get help to get to the doctor, they would be given a token to get on the bus to get to the doctor. Again, it wasn't family-centered. So it didn't work for her. She had children. She had no child care. She couldn't leave the children by themselves. So, what ended up happening: She never made doctors' appointments. She didn't get the care that she needed.
Many of the women in this area are either from farther south, other parts of the U.S. or just other parts of the world. So they didn't have family members close by who could step in to help take care of the children. It didn't happen like that. So their children were then taken and put into the foster care system. No fault of their own; they just got sick.
When they got a little better, they went back: "Now, may I please have my children?" It wasn't that simple. It wasn't that easy. You had a battle to fight to get your children back. And that's hard for women without HIV, but when you add HIV to the list, it was 500 times harder for you to get your children back.
And so did the support group ever become face-to-face?
Yes. I started an actual support group in my home, where we came together as women, and we cried, and we tried to write down what we wanted, how we wanted things to go and who should keep our children. We made things up as we went along. We shared our resources. We shared our food. I shared my food. I shared my transportation. I kept children in my home while their moms were hospitalized, and took them all over, to Maryland, D.C., to different schools -- because we didn't all live in the same neighborhood -- and I was sick myself.
We became this little network of women that started sharing our resources, and helping each other. And that was hard, because we were very, very ill.
What year was this?
The support group started around '92. So that continued for a while. It got really big. Then I went to a church and said, "Can I please use your cafeteria or your basement on a Saturday?" -- because it had outgrown my home. Also, there were women who weren't able to get to my home. We continued there in the church basement until about '97 when we got our first grant to just get a room and hire one person to help me.
At what point did you start calling it The Women's Collective?
What happened was, in 1995, a friend said to me, "You're doing all of this on your own with no money, and you're sick. You should try to get incorporated."
I'm like, "What is that?"
She said, "Well, get your 501(c)(3)." So I raised money from different family members and some friends, and then got a lawyer to do the incorporation paper.
That happened in '95. We created the name, too. We didn't want "HIV" in the name; I didn't want "HIV" in the name. So, I don't know how, just, The Women's Collective -- because it was a collective of women. I sat on it, really, for two years, and still continued to do what I was doing: a support group out of my home and the church basement, not to mention, the cooking, keeping children, taking folks to the doctor and sharing my food.
Then in '97, I realized: I can't do this anymore. So I started trying to get money, apply for money. That was difficult, because many of the places that we talked to kept saying, "We don't need another organization. We need you to work with the organization in place and make them serve women, and do it the right way."
Well, we were very ill. We did not have the energy and strength to go and fight. So it took a lot of begging and a lot of asking, and learning a lot of things. I had never written a grant, but a friend helped me. We submitted it and, low and behold, we got a call for an interview.
We ended up getting the money to hire one person, who is still with us today.
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