ASHLAND – Stacey Roberts, a licensed social worker in Ashland, was a 19-year-old college student when she first began to have visions and hear voices others did not. Following a diagnosis of mental illness, she carried the label–without any intervention to understand her experiences–for over two decades.
During that time, Roberts began to believe her diagnosis defined her personhood.
“I went through a very dark time thinking that (diagnosis) was my identity,” Roberts said. “I lost a lot of years I could have been thriving.”
When the Mental Health and Recovery Board of Ashland County brought Ron Coleman and Karen Taylor from Hearing Voices Network (HVN) in the U.K. to speak at a conference seven years ago, a whole new perspective opened up for Roberts, who attended the event for work.
HVN is a social justice organization aimed at raising awareness for and reducing discrimination against people who “hear voices, see visions or have other unusual perceptions.” While these kinds of experiences are fairly common (affecting between three and 10 percent of the population, according to HVN’s website), individuals who speak about them are often dismissed as ‘crazy’ and opt to hide instead of healing.
“When Karen spoke at the conference and I asked a question, it was like this lightbulb went off,” Roberts said. “What's my alternative story? I’ve been told this medical model my whole life, you know–‘you’re this or you’re that, you’re diagnosed this and that.’”
“But nobody ever worked with me. I didn't know that there was an alternative story,” she said. “I was steeped in the trauma that I was experiencing, or had experienced, that had affected the way that I view the world: through the lens of those events.”
Roberts began working with Coleman and Taylor to understand how childhood trauma was linked to her experiences of seeing visions and hearing voices. The question of, ‘What’s wrong with you?’ was replaced with, ‘What happened to you?’ Finally safe to explore the root cause and meaning behind these voices and visions, she began to heal.
In July of 2018, supported by Appleseed Community Mental Health Center and the Mental Health and Recovery Board of Ashland County, Roberts started an HVN-USA affiliated support group in Ashland.
Celebrate Your Mind, one of only three affiliated groups in the state of Ohio, meets twice monthly in downtown Ashland. The group is open and takes place in a nonclinical setting where members can speak freely about their experiences without judgment or stigmatization. Location address and meeting times can be found here.
Appleseed Executive Director Jerry Strausbaugh spoke about his organization’s backing of the support group in Ashland and their hope for the help it can provide.
“One of the primary reasons we support it is we believe in what I would call a ‘medication optimization strategy,’ which means that medications can be a help, (when) used strategically. But there are many other paths that can bring healing, and one of those–especially for people who have experienced hearing voices–is this model of exploring your voices and the meaning of your voices,” Strausbaugh said.
“It's unique because if you listen to the mainstream discussion out there, psychosis comes from a broken brain and you need medication to fix it. (The HVN approach) says voices–in what some would call a psychotic experience–come out of your body trying to make sense out of lived experience. . . If you can explore those in a safe environment with trusting people and learn to manage them, that could be a path to healing.”
Celebrate Your Mind ultimately seeks to offer a place of respect, equality, acceptance and mutuality to individuals, many of whom have not received those in the past. Roberts likened it to a weight loss or cancer support group, where people come together with a common theme to speak openly about their experiences.
HVN-USA affiliated group guidelines include freedoms for members like these: “Freedom to interpret experiences in any way, not just an illness framework; Freedom to challenge social norms–including gender norms and other ideas about how we are ‘supposed to be’ in the world; Freedom to talk about anything–not just voices and visions.”
Roberts attends the meetings herself but notes her role is not to “lead” them. She is an active participant in a peer group, and it is not a therapeutic support group. She said, “Although I'm a social worker, I'm not providing therapy. I'm providing mutual support.”
Three to four members typically attend their meetings, but there is open room for more community members. Strausbaugh mentioned Appleseed would be happy to support expanding to more groups if there is a demand.
Ashland’s mental health levy, which passed in the fall, funds the group. Both Strausbaugh and Roberts expressed gratitude for the Ashland County community for voting to support this part of the population.
“Two thirds of those (who) hear voices really never interface with the field of psychology. So, there's people out there who may be experiencing, but they're not going to Appleseed or they're not affiliated with a mental health or psychological anything. They're just having these experiences,” Roberts said.
“Medication has its place, but it's not the totality of the holistic approach we're striving for, and which Appleseed is striving for. (We) recognize this population in our communities, that it's not a pathological process—it's an experiential process.”
Remembering the dark times she faced after her diagnosis years ago, Roberts shared her personal motivation for advocating so strongly for this group locally. “If I had known what I know now, my quality of life would have increased significantly, had I had a group (to bring) me closer to an understanding about me and my experiences.”