When Vanessa Johnson was diagnosed with HIV in 1990, she did not come across a lot of stories of African Americans like herself living with the virus. “I knew there were other women out there, but they just wouldn’t come out,” she says. So Johnson worked to change that. Living in Albany, New York, at the time, she became an activist dedicated to helping women disclose their positive status and tell their stories.
As she worked in the field, Johnson observed that when women finally did come out to talk about their history, they didn’t talk about HIV specifically. Instead, she recalls, “when women told their stories, they talked about their childhood. And just like me, they suffered a lot of trauma in the form of abuse. I thought about it intuitively and was like, ‘This is a common thread.’”
Thus, in 2007 she launched Common Threads, what is now a five-day, small-group training session that she offers around the country. It’s designed to help HIV-positive women connect the dots between their life experiences and their positive status and then to increase their willingness to tell their stories and disclose their status to their families, friends and communities. It’s storytelling as a means for disclosure, self-empowerment, HIV prevention and activism.
When an HIV-positive woman is faced with the stigma, shame, fear and misunderstanding of her diagnosis, one of the most difficult, yet most empowering things she can find is her own voice, says Johnson, who now lives in Washington, DC, and whose main job is consulting for AIDS services organizations including governmental agencies and faith-based groups through the Ribbon Consulting Group, which she founded.
Whenever possible, Johnson takes the Common Threads sessions, funded in the beginning by the U.S. Office on Women’s Health, on the road to budding activists living with the virus. Participants must be on HIV treatment and involved in an AIDS service organization, which usually helps fund the trainings. To date, more than 100 women across the United States have graduated from Johnson’s program, ranging from Washington, DC, and New York City to the states of Louisiana and South Carolina.
In 2012, funding ran out, leaving the program and its graduates, who also require money to support their travel and outreach, in dire straits. But the empowered women devised a way to help fund themselves and their healthy lifestyles: by launching microenterprises in which they make and sell jewelry and other wares. Today, teaching that business aspect is an integral part of the retreats.
Here, POZ offers a closer look at all three phases of the Common Threads experience.
Phase 1: Storytelling as Empowerment
Common Threads begins by teaching prospective activists new ways to interpret their life experiences and make meaning out of them—in other words how to think about and talk about their HIV story. Participants discuss various factors that can make people more vulnerable to HIV, such as poverty, discrimination, sexual abuse and addiction. They then make personal timelines including both traumatic events and accomplishments in their lives. Examples include when you first experienced domestic violence as a child, when you first smoked marijuana, when you got your first job, when you first had an HIV test, when you got sober and when you started taking HIV meds.
The trainees also create a family tree to help illustrate how these factors play out in their family’s history and how they contributed to their instability and HIV status. This allows women to look at their lives through the lenses of their families, as an intergenerational approach, rather than a blame game for their HIV infection.
“It works because it’s a deeper, more meaningful conversation about HIV,” says Johnson, who faced both family abuse and drug addiction before her diagnosis. “I found that after these women could speak about what happened to them as children, it gave them courage.”
“On the initial day you really get to first know each other,” says Lepena Powell-Reid, a 2011 graduate of the program from Tampa Bay, Florida. “Some women were really resistant, they stepped back against the wall, while others were really boisterous, saying they’d been in the trenches and seen it all.” Common Threads brings empowerment and the activist spirit to both personality types, she adds.
Powell-Reid, who was diagnosed with the virus in 1990 and has worked as an activist for both HIV and women’s sexual awareness since the ’80s, has always been eager to speak about HIV awareness, but it was hard for her to figure out how exactly to do it. “I was planning a family reunion,” she gives as an example, “and I really wanted to bring these issues into the conversation during our gathering and have health materials for my family members.
“It always takes someone to spearhead that conversation,” Powell-Reid notes, adding that Common Threads teaches that skill very well.
That’s why Sharon Decuir, a 2009 graduate of the program from Baton Rouge, got involved.
“To see other women speak out started to give me strength,” says Decuir, who was diagnosed with HIV in 2002 in the midst of a drug addiction she thought would never end. “For those first two to three years, I thought it was only me. But when you begin to slowly realize that it’s not, it gives you a sort of foundation.”
She says it was the storytelling phase of Common Threads’ training that helped turn her life around. “We build on the negative things in our lives to make our lives better. We have to be able to look at those factors, but it’s up to us to take the initiative to do something to change it.”
Since getting clean and then going through the Common Threads training, Decuir has gotten involved with the Campaign to End AIDS and the Positive Women’s Network (PWN), has hosted the Women’s Advocacy Leadership Summit and now leads local testing, counseling and behavior modification interventions throughout Louisiana.
Phase 2: The Microenterprise Circle
As funding ran out in 2012, Vanessa Johnson was unable to provide for the fledgling activists she had created. And without the money to pay for hotels and transportation or the fiscal ability to take time off from work, many Common Threads graduates started to hit a wall in their outreach abilities.
That’s when Juanita Williams and Pat Kelly, both 2009 Common Threads graduates from Orangeburg, South Carolina, came to Johnson with a novel idea to keep them afloat: to fund the group themselves with a microenterprise marketplace.
“They wanted to take it from storytelling advocacy to actually becoming a vehicle by which women could come together and make additional money to do the work that wasn’t being funded,” Johnson says. She gave the women a chance, and found that crafting, specifically jewelry-making, could be a cheap, effective way to continue empowering her graduates.
Thus, the second phase of Common Threads, called the microenterprise, or ME Circle, was born. Now, after undergoing storytelling training, graduates are also taught how to make HIV-awareness jewelry and are given training on how to start their own miniature businesses.
The program allows graduates to stay connected with Common Threads through community crafting sessions; it also sets participants up with seed funding from the organization in order to buy materials such as wires, beads and a $20 jewelry-making kit to get on their feet.
“Me being able to subsidize being able to go to different places is a phenomenal plus for me,” Kelly says. “We are now able to pay ourselves for speaking engagements. If I didn’t have this added joy and monetary help, there are a lot of things that I do that I wouldn’t be able to do.”
Graduates sell their wares at local and national AIDS conferences, churches, schools, community awareness events and more. In fact, in 2012, Orangeburg’s Common Threads was the first American microenterprise contracted to produce the red ribbons for World AIDS Day.
Kelly, for her part, is a founding member of PWN and a steering committee member on the People Living with HIV Caucus. She travels around the country doing presentations on HIV prevention. “We got a chance to travel and get some more training and then bring it back to our communities. Things that we would never have had the opportunity to do.”
Johnson and her Common Threads sisters have since used Orangeburg as the model for how to bring a microenterprise to its graduates, and they have seen similar successes across the country. Take Stephanie Laster, a 2010 graduate of both parts of the program from Atlanta.
After going through the second part of Common Threads’ training, she brought the idea of launching a microenterprise to her job at SisterLove, an Atlanta–based reproductive and sexual health organization with an emphasis on women of African descent.
“I taught them how to take their first piece and be their own advertisement. I’ve advocated, wrote letters to get somebody to donate materials to teach the women, and funded the tools and the beads.” Now, Laster is trying to raise the funds to bring the second part of Common Threads’ training to the Atlanta team.
In the meantime, Laster has sold her group’s jewelry at community forums across Atlanta, two national AIDS conferences and is now working on developing an online store for her local ME Circle team. “I came back and I shared the money with them, and they were so elated that they continued to do it,” she says. “Seeing these women in my community take hold of it and want to rock with it. That’s amazing.”
“Microenterprise came out of the women saying, ‘OK, what’s next?’” Johnson says. But to her surprise, even the ME Circle has grown into much more. “It’s turned into a vehicle in which the groups could stay together and I could stay involved with them. And it’s enough money for them to give back.”
The ME Circle helps ensure that the women are less dependent on public benefits and resources. In the bigger scheme of things, it also illustrates through example that poverty and socioeconomic conditions influence a woman’s vulnerability to HIV and her ability to live successfully with the virus.
Phase 3: Entrepreneurial Activists
Margot Kirkland-Isaac, a graduate from Washington, DC, doesn’t think of Common Threads in terms of the storytelling or its entrepreneurial circle. Instead, she views the program as a holistic approach to building positive women’s empowerment around the world. Indeed, one of Johnson’s original goals was to train activists; so the final phase is to spread the lessons of HIV prevention and education throughout their communities.
“Once you know where you came from, you’re able to figure out where you want to go,” says Kirkland-Isaac, who first got involved with Common Threads by working as Vanessa Johnson’s assistant at the now-defunct National Association of People With AIDS. She often went to training sessions as part of her job, but never went through the full program until a Florida session in 2011.
“I was sitting in the back of the room long enough,” says Kirkland-Isaac. “Going through it myself was extremely overwhelming, frightening at times. But you learn that by telling your story, you will save another woman’s life.”
“Groups like Common Threads go beyond just advocating on the hill,” says Johnson, who has since helped support Kirkland-Isaac through a successful career in international AIDS activism. In 2006, Kirkland-Isaac was invited by the Bush Administration to work for a program called Mothers to Mothers aimed at helping prevent mother-to-child transmission in South Africa. Today, she is on the board of directors for the Global Network of People Living with HIV (GNP+) North America, and she works for the DC Care Consortium. On top of that, both she and Johnson recently traveled to Anguilla, the Caribbean island, for the Race Against AIDS.
“It’s about being empowered enough to make an informed decision as to what to do with the rest of your life,” says Kirkland-Isaac, and Common Threads has done exactly that—empowered her to reach out to her community and become a fierce advocate for women within the HIV field.
There are other less obvious benefits people—and communities—receive from Common Threads. The program helps connect other women’s organizations with each other. The organization works closely with Positive Women’s Network, of which many of its graduates are founding members. Johnson is also considering recruiting members of SisterLove as trainers. Common Threads’ members represent dozens of HIV/AIDS groups, but they stay together through a tight-knit community, bound by their stories, their self-empowerment and the work that they’ve been able to do as a result of the collective.
“We have a sisterhood, we get together, we call on each other,” says Janet Kitchen, a 2011 graduate from Tampa Bay, Florida, who went through the training alongside Kirkland-Isaac. “If there are events going on with other groups, we support them by going to it. We try to make sure we stay together and keep the message going.”
Kitchen heard of Common Threads after meeting Johnson at different activism events she attended soon after being diagnosed with HIV in 2008. She worked hard to bring the training to her community and has kept the group together through activism initiatives.
Today, Kitchen speaks out about drug pricing, is working on her memoir and is also planning to pursue her doctorate in health and public policy. She says Common Threads has given her, and other women like her, the strength and ability to get out different messages but remain a part of a cohesive community.
“Individually, we’re all connected by that one thread, the common thread that we have by being HIV positive,” Kitchen says. “And we’re all getting the message out in a different way. We’re like one nucleus, and then everyone is threaded from there.”
And Kitchen, along with the rest of her Common Threads sisters, is both surprised and optimistic about the future of the community. “The scope of Common Threads is more than Vanessa even imagined,” Kitchen says. “But hell and high water, we’re going to start going out more in our communities and around the nation to do this work.”
Click here to read the personal stories of the women of Common Threads.