Ron Coleman was sitting in his office doing some calculations when a voice behind him said, "You've done that wrong." He looked around, but saw no one.
"I put that down to stress and went out and got really drunk that night, thinking that would get rid of it," he recalls. "Then it continued and then I started hearing other voices, and before very long there were about six of them going on at different times… sometimes all together."
The voices, he says, were a manifestation of various traumas: Coleman was molested by a Catholic priest as a preteen altar boy, then lost his first wife to suicide when he was 17—just one year after their wedding. He was then "locked up in hospital for years," until a support worker convinced him to go to a Hearing Voices support group, where "the first thing I heard in that group was, 'Your voices are real.' "
That shifted his perspective entirely. "It made a lot of sense, because if they were real I could do something about it," explains Coleman. "Up until then I'd been told that they weren't real, so therefore I couldn't do anything about it."
The Hearing Voices Network (HVN), where Coleman is now a trainer, is an informal yet influential collective that aims to empower people who hear voices. Members of the group believe hearing voices is a normal variation of human existence, and, notably, one that needn't always be diagnosed as an illness—unless that is how the voice hearer chooses to see it. The collective also teaches that the voices should be validated as a means to seeking meaning, even if only metaphorical.
In short, the HVN is an alternative, non-medical approach. Voice hearers, as they are known, are taught how to talk back assertively to their voices, and how to negotiate downtime from them, too. "It's a self-help movement," Coleman says. "We don't just discuss hearing voices, we discuss our response to hearing voices."
The first iteration of the HVN was founded in the Netherlands in 1987 by Dutch psychiatrist Marius Romme, a science journalist called Sandra Escher, and Patsy Hage, a voice hearer. One year later, the UK network was founded in Manchester, and from there the collective began to steadily branch out. It now spans 35 countries across the globe.
Hearing Voices is not about illness, it's about liberation.
Schizophrenia is defined by the World Health Organization as "a severe mental disorder, characterized by profound disruptions in thinking, affecting language, perception, and the sense of self. It often includes psychotic experiences, such as hearing voices or delusions." The current go-to treatment, according to the Royal Australian and New Zealand College of Psychiatry, is a combination of antipsychotic drugs such as risperidone, clozapine and olanzapine.
However, these drugs have been linked to various side effects, such as an increased risk of liver dysfunction, weight gain, sexual dysfunction, lethargy, diabetes, and cardiovascular problems. Coleman is a veteran of antipsychotic's potential side-effects. "I've had all sorts," he says, "where your hands start shaking, massive weight gain… later on in life I ended up having heart bypasses, diabetes, and all sorts of things."
Tane*, a 38-year old student and HVN member, noted similar effects on his body. "After about a year [on risperidone] I had a ketoacidosis emergency and ended up in ICU," he says. "The doctor treating me in ICU believed the risperidone was responsible for spiking my sugar levels."
Doctors changed Tane's antipsychotic medication, but this had little effect. "About a year after taking aripiprazole instead, I started seeing the same effect on my body. My sugar levels started increasing dramatically."
Unsurprisingly, the Hearing Voices Network has its skeptics. Many psychiatrists are uncomfortable with the promotion of non-medical and non-evidence based approaches to schizophrenia. Their discomfort is backed by research demonstrating that the longer the period of unmedicated psychosis, the worse the outcome.
For many people with schizophrenia, there's no way you can talk to them about their voices.
What's more, a segment of diagnosed schizophrenics lack insight into their condition, says Dr. Richard Porter, director of the Mental Health Clinical Research Unit at the University of Otago. "There's no way you can talk to them about their voices, because they're so distressed, and it simply is an illness phenomenon. In the acute phase, that simply has to be treated.
"Some centers use approaches to help people develop cognitive strategies to get around the cognitive deficits of schizophrenia," Dr. Porter continues. "The important thing to remember that it's not just psychotic symptoms: that's a small part of the syndrome. People with schizophrenia have very major cognitive deficits."
Dr. Sigurd Schmidt, a psychiatrist and the clinical director of General Adult Community Psychiatrist Services in New Zealand, says the potential dangers of avoiding medication if an individual suffers from schizophrenia are "significant." Firstly, there is a much higher risk of having ongoing psychotic symptoms like delusions and scrambled thinking, "which in turn can result in increased risks to self and others as well as an inability to take care of self."
Secondly, explains Schmidt, "There is evidence that poor control of the psychosis can lead to a marked decline in cognitive function, which may never return to a pre-morbid level of functioning, causing permanent decline. Treatment other than antipsychotics can have potential benefits, but only while an individual is free of psychosis."
Beyond the issue of medication, a key goal for the Hearing Voices Network is the eradication of stigma. The ultimate objective, says Ron, is that "that every voice hearer can walk down the street and talk back to their voices, and everybody will accept that as being normal. That we accept voice hearers in the same way we accept people who are left-handed. Hearing Voices [Network] is not about illness, it's about liberation."
For James*, an articulate 37-year-old who works in the health services and who spent five years in a psychiatric ward, separating himself from the stigma of his mental condition was crucial to his recovery. "It was hard at first," he says. "Thinking that there's something wrong with your brain; that you might not be experiencing reality as it is. If you can't trust yourself, where do you go? Being surrounded by people [at HVN] who know my issues but still treat me like anyone else has made such a difference."
James compares this to his time in hospital, where "there's a clear difference between the staff and you. You need a support person to go to the library, to grab a coffee, they're always writing notes about you. That was really disabling, that whole process. It's taken me a long time to undo a lot of that."
If you can't trust yourself, where do you go?
"[For a long time] I wasn't given a different way of seeing my illness," he adds. "It was treated as something negative and bad, something I had to get over rather than see as a part of who I am, and something that I need to understand—even get some meaning out of, I guess."
Tane still avoids telling people about his voices, due to the stigma. "I went to see a sleep specialist once and I told him I hear voices [which stops me from sleeping], and he immediately got alarmed and his body language changed as if he was terrified to be near me. It felt like he assumed that my voices were going to tell me to harm him."
A lot of people only know of the negative side of voice-hearing, he adds. It comes up when people talk about psychosis-driven crime, say, or a school shooting—"But a lot of people are successfully coping with the voices."
James believes stigma actively undermines the health of people diagnosed with schizophrenia. "I think that, for a lot of people, [diagnosis] exiles them from their community, you know? Now they've got this demeaning label, there is scientific proof that there is something wrong with them, and that they are less human in some way. It feels like a life sentence for a lot of people."
"We're still seen in many quarters as dangerous because we hear voices," says Coleman. "People still want to eliminate the voices; psychiatry sees that as its role. There's still a lack of trying to understand what's happening."
For Coleman, the Hearing Voices Network is, at its core, a collective fighting for the human rights of voice hearers. "Hearing Voices has challenged the oppression of a minority group in society, and in that sense is really worthy of being the big movement of this century," he says.
"Last century we saw the women's movement, the gay movement, the civil rights movement… I think this century will be the century for people in the mental aisle."
With additional reporting by Rebecca Kamm.