Imagine losing your husband to AIDS, then losing your three year-old child to AIDS six months later … then being the only woman on the entire planet with AIDS.
That was Patricia Nalls’ reality in 1986 at the height of the hysteria-filled dark ages of the HIV/AIDS pandemic. When doctors gave the resident of Washington, DC two years to live, she went into isolation and prepared to die. On top of that, the household income shrank to that of Nalls’ disability check and she still had her two surviving children—ages four and eight—to care for.
“I would stay up at night wondering which bills am I going to pay today,” she says of her own personal dark age. “It’s extremely difficult having two children and knowing you’re going to die. I kept seeing them as orphans. I literally had to go hide in the closet to when the people came to give me my [inhaler treatments] so my kids wouldn’t see that I was sick. I’d get them up and off to school, then I would have time to be ill.”
The fact that Patricia Nalls thrives into the 21st century could be said to be a miracle. More remarkable, though, is what she’s done with her time along the way.
“I finally asked the doctor: am I the only woman?”
Her doctor provided her with her first AIDS reality shift: she was not the only female with HIV, but due to confidentiality, he could give her no further information. Her spirits buoyed, Nalls created a flyer with a fateful question:
Any other women with this disease?
She posted the flyer in her doctor’s office. She even paid for a “secret phone line” in her home and a collective energy began coalescing. The flyer evolved into monthly meetings in Nalls’ home. “We’d cook, eat and cry. We realized we were not the only ones and we were all talking about the same things, kids and all the issues we faced.”
While the women shared, their kids played in the backyard, and eventually, the group grew so populous, the meetings were moved to a church basement. But Nalls and the woman knew that much more than a larger venue was needed.
“I was literally watching women starve to death, using the food given to them to feed their kids. We started looked for services and discovered nothing was available. We started sharing food, rides, childcare. We became a small network of women helping each other.”
Today, that network is the Women’s Collective, an AIDS service organization dedicated to empowering women living with HIV/AIDS, with special emphasis on women of color. Under Nalls’ leadership, what began as a support group in her home is now an organization with a full time staff of 15 and part-time staff of 20 peer educators currently serving over 600 women. In addition, the group educates thousands of other women on prevention strategies. The Women’s Collective model has been so successful, it has been imitated by women’s groups in Africa, Guyana, the Ukraine, Spain, Canada and Brazil, as well as around the United States.
Over the years, Nalls has remained an outspoken advocate for women and their families. She served as a consultant on a Health Resources and Services Administration Special Project of National Significance. The project’s goal was bringing women living with HIV/AIDS to the policy table where decisions were being made about their lives. She’s also organized dozens of community focus groups, speak-outs, and information sharing meetings, and has successfully advocated for women at all levels, including with the Ryan White Title I Planning Council, where she has made a difference in breaking down many of the barriers that women face in accessing services.
Nationally Nalls was involved in the Executive Committee for the 1999 National Conference on Women and HIV/AIDS, and the Ms. Foundation’s Innovative Health Care Model for Women living with HIV/AIDS. She also chairs a committee that is looking at a Medicaid waiver for the District and speaks on Capitol Hill, addressing the issues that women living with HIV/AIDS and their families face.
Nalls has also put a face on AIDS in other ways. She’s been featured in the media on a variety of critical issues, representing women living with and at risk for HIV/AIDS. She has appeared in print via Essence, People, the Washington Post, Little India, and the San Pablo Avenue Times. Her television exposure includes WUSA 9 News and the Audrey Chapman Show, among others.
In recognition of her efforts, Nalls has received numerous accommodations, but the awards don’t stop her work or the need for it.
“Women still facing a lot of same things I faced, just 18 years later,” she notes. “We let them know can live with HIV, but you have to get tested, get care early, and you must get care you deserve.”
And she’s not shy about sharing her experience so that it may benefit others.
“Allow your hearts to listen to the stories of women of color living with HIV/AIDS,” she encourages us. “Some of us are your close friends, your neighbors. We sit next to you at work. Some of us are your mothers, sisters, daughters who are too ashamed and fearful that you may turn your backs on us. All of us are fighting for our lives and we cannot do it without your support and love”
Like their mother, Nalls’ children also thrive into the new century. Both daughter and son are pursing higher education, in grad school and college respectively. The family has come a long way since the dark ages of the Eighties, and while Nalls grew up with a mother who was always helping others, she still isn’t sure where the initial strength came to help so many women in her exact same shoes. She is, however, clear on one thing: “It was my saving grace.”
And the saving grace of many others, past, present and future.