Since the start of the pandemic, the Hearing Voices Network USA (HVN-USA) has expanded its Zoom-based peer support for those who hear voices and experience visions. While the Omicron surge did not fully shut down in-person meetings, most groups have moved online, according to HVN-USA board member Caroline Mazel-Carlton.
HVN-USA has more than 100 registered support groups throughout the country, but none of them meet in Vermont (though two – in Keene, NH, and Greenfield, MA – border the state’s southwestern corner). Zoom has offered a solution not only for longtime members during quarantine but for those who may not have a support group in their geographical vicinity. There’s even an online group for voice hearers’ family members.
Mazel-Carlton, a voice hearer who lives in Holyoke, MA, started HVN-USA’s first online group in 2017 with the help of another board member.
“I was involved in this project where I was traveling to different parts of the country to help set up HVN groups, but that was moving quite slow,” she recounted. “So for me, it was just about accessibility. I wanted every voice hearer or visionary in America to be able to access a group, and it felt like the only way that would be possible would be to put one online.”
At the time, some doubted the format. “There were certainly people who felt uncomfortable with the idea. Like,‘Oh, a lot of voice hearers don’t like technology. I don’t know if this is going to work,’” Mazel-Carlton recalled.
But she had personally kept up one-on-one electronic correspondences with several voice hearers who didn’t live near in-person groups, and when she invited them to the initially fortnightly Zooms, the popularity of the meetings prompted a weekly schedule before long.
Soon, Mazel-Carlton began to help facilitators in other time zones set up additional groups to accommodate a variety of voice hearers’ schedules. And when the pandemic hit, with her assistance, “dozens and dozens” of in-person groups switched to Zoom.
The online groups largely mimic the format of their real-world counterparts, with most organized by trained facilitators bearing “personal experience of non-consensus-reality states of some kind.” Conversational in nature, meetings typically last 90 minutes.
“What other groups might call ‘cross-talk,’ we call connection,” Mazel-Carlton said. “So we allow people to respond respectfully to each other, ask each other questions, and sort of have this feel like a group of friends hanging out, and I feel like we’ve kept to that as much as we can over Zoom, though it’s tricky because people have to mute and unmute.”
Online peer support may not be for everyone, but Mazel-Carlton has witnessed its benefits. “This is just me personally, just one voice hearer’s opinion: I prefer the community of being together in person,” she acknowledged. “But a lot of people I talk to, they’re like, ‘I’d be dead if it weren’t for these online groups. They saved my life. They’re the best part of my week.’ Some people really, really love them.”
According to the HVN-USA charter, all groups within the network promote three central freedoms: the freedom “to interpret experiences in any way, not just an illness framework”; “to challenge social norms, including gender norms or other ideas about how we are ‘supposed to be’ in the world”; and “to talk about anything, not just voices and visions.”
HVN-USA’s website – hearingvoicesusa.org – contains a list of active groups, with contact information. “You can also send an email to [email protected] and we will support in finding you a group or groups that meet within your schedule,” Mazel-Carlton advised. “Ideally, we try to connect people with folks that are in their region. It doesn’t always work.”
Newcomers must request to join. “Most of our groups, including the ones that I facilitate, we do not publicly publish the access link. Unfortunately, voice hearing is still a really marginalized experience, so we want to ensure confidentiality,” Mazel-Carlton explained.
For some voice hearers, community may be more important than ever amid the stressors and disruptions of COVID-19.
“If someone has started hearing voices in the pandemic or your voices have changed or been different during the pandemic, you’re not alone,” Mazel-Carlton noted. “This is common. A lot of us have had that experience, so definitely don’t be afraid to reach out and share that experience with others who have it.”