Long-term survivors share their stories, discuss strategies for the year ahead

‘The importance of a sense of belonging to community and their experience, knowing that our experiences are being honored and that our suffering has meaning as a part of that community…We will not lose that essence, as we move forward, as we stabilize, we will deepen and we will expand.’

Since 2015, The Reunion Project (TRP) has opened space for vital conversations between and among long-term survivors of HIV. Now, after nearly five years, as they are poised to expand their work, they reached out to the community through a webinar, an online video meeting that reported back on their activities and inviting them to join in the year ahead.

Like many of TRP’s programs, the webinar offered a warm welcome along with a mix of report-backs from leaders, opportunities to reflect, and an invitation to work together to move forward. The virtual gathering allowed the groups’ leaders to share their newly-adopted roadmap for developing the organization so they can build successful strategies for living and supporting one another, today, and into the future.

And they also launched their call for expanded leadership: They invited people to consider applying for their steering committee, which will increase from seven to a body of 15–21 people, or to one of the work groups on communication, fundraising, network-building, and programs that are open to all community members.

Facilitator Vanessa Johnson, who was diagnosed with HIV in 1990, opened up the webinar, which was titled “Honoring Our Past, Envisioning Our Future: Mobilization Through Our Stories of Survival,” thanking the seven-member steering committee that has shepherded the group as a national alliance of HIV survivors, and introducing Matt Sharp of Oakland, California, who co-founded the group with Jeff Berry of TPAN and Positively Aware.

Sharp explained that The Reunion Project was inspired by initial town meetings in San Francisco that revealed an eagerness for connection and discussion—not just about the biological or medical issues that affected their lives as they aged with HIV, but the psychosocial issues, including loneliness and isolation, grief and fear, that many were facing.

The Reunion Project expanded this town meeting model in events around the country, finding several groups eagerly hosted subsequent events, allowing the momentum of those first town meetings to continue. They also presented workshops at the United States Conference on AIDS (USCA), held a national roundtable forum, and released a groundbreaking report, Unintended Consequences of HIV Survival.

Their initial efforts garnered much praise and some funding (though not as much as may be perceived at times in the HIV community, they are quick to clarify); they’ve directly reached over 800 people in seven cities, inspiring many more as the impact of the sessions resonated across the lives of the participants. In addition, in the last year they entered into a three-year collaboration with TPAN, “Positively Aging,” which allows TPAN to increase direct services for older persons living with HIV in Chicago, The Reunion Project to expand its national support network, and information about the project and issues surrounding aging with HIV to be shared with POSITIVELY AWARE’s national audience.

“Most of 2019 has been around restructuring and strategies to make sure that we have a model that’s going to be sustainable,” explained steering committee member Waheedah Shabazz-El of Philadelphia.

“We like hearing from you. We need your feedback. We honor your feedback and stories,” she added, referring to over 30 interviews that the group conducted this year with program participants and community leaders. “Because we don’t want to be talking to each other—we want to be talking to you. We want to deepen our funding, our partnerships, and resource expansion.”

Ultimately, the group adopted a roadmap (disclosure: I worked with fellow consultant Susan Wolfson to draft and present the roadmap to the group) that will allow them to increase their leadership to sustain and then expand their programs and national network. 

Steering committee member Louis Spraggins offered a variety of quotes from the interviews, explaining that the broad range of input emphasized how each long-term survivor has a unique experience to share—and that these voices will continue to guide TRP as it moves forward.

“The untold stories are profoundly important for us,” he said. “The importance of a sense of belonging to community and their experience, knowing that our experiences are being honored and that our suffering has meaning as a part of that community… We will not lose that essence, as we move forward, as we stabilize, we will deepen and we will expand.”

Towards the end of the gathering, Jeff Berry led a moment of reflection and goal setting, asking everyone to imagine that they were standing at the center of the year 2019:

On one side, each person was held up by a mantra or slogan, an individual person, or a program, group, or organization that supported them over the year. On the other side, they held someone else who they are helping or mentoring, or even just supporting with a smile.

As each person envisioned themselves as supported while also being a source of support, Berry asked them to consider the year ahead: What will be the opportunities and challenges?

In typical Reunion Project fashion, the answers were as inspiring as they were varied, striking a balance between the need to face what may come to pass in the 2020 elections while continuing to grow in self-knowledge and unity across our communities.

It was time to close the call—but Shabazz-El offered to stay on the call late, to give space for folks who needed more time to talk, just like those lingering at the end of a town meeting. 

JD Davids is a longtime HIV and social justice activist who now runs JD Strategy: liberating possibilities for power and justice. In 2019, he served as a strategic advisor to The Reunion Project as well as other networks of people living with HIV, and in and across transgender communities.