Connecting People and Ideas in the Hearing Voices Movement

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MaeAfter more than 40 years bouncing in and out of the criminal justice system and mental-health institutions, Mae Harden was ready to strike out on her own.

She and her psychiatrist sketched out a recovery plan. She set and achieved goals, becoming a certified peer specialist and earning a bachelor’s degree from Chestnut Hill College. She gave up disability benefits and increased her work hours to full time, leading group therapy to help others cope with their mental illnesses.

“But I still kept one secret. I would not tell people when my voices were still very loud. I would not tell people how, if I was home at night, I’d actually have to go out in the street because it was way too loud in my house,” said Harden, of Norristown.

For as long as she can remember, Harden has been hearing voices. They are present every day, sometimes loud, sometimes softer, sometimes one nice voice, and sometimes many disruptive ones.

When she is thriving, one voice dominates all the others – Snooks, a funny, vibrant 16-year-old who has been Harden’s friend and confidante through childhood abuse, adolescent molestation, teenage rage, and adult feelings of inadequacy.

After 40 years of unsuccessful treatment, Harden had come to accept that the voices could not be medicated out of existence; but they could be managed.

“I’ve learned to set boundaries with them. Like they still play songs in my head at the most inopportune moments, but they’re not, like, screaming at me,” said Harden, whose high cheeks and playful smile make her look younger than her 56 years. “Things are actually better when Snooks is around.”

In 2009, Harden attended a training session with a fellow peer specialist, Berta Britz, where they learned about a growing international movement to change how society perceives – and how psychiatry treats – those who hear voices.

Led by pioneering Dutch psychiatrists, peer support groups began popping up in the Netherlands and the United Kingdom in the 1990s. They are now in 20 countries, including Uganda, Japan, and Australia – and the Gaza Strip, where Israelis and Palestinians come together to share their most intimate thoughts and struggles.

The United States Hearing Voices Network, formed in 2010, has about 20 groups clustered along the East and West Coasts. Pennsylvania’s only network is in Montgomery County, where Britz and Harden lead support groups in Norristown, Bridgeport, Pottstown, Bryn Mawr, Willow Grove, Hatboro, and soon Lansdale.

Just got louder

The key to coping with voices, Britz said, is to acknowledge them – a direct contrast to all the psychiatrists over the years who told her to suppress them.

“Professionals have often been afraid of people like me who hear voices. . . . They taught me my experience wasn’t real and whatever was going on I had to fight it,” said Britz, who said she had been “terrorized” by her voices since 1969. “But I’ve found that when I tried to drown out my voices with distraction, avoidance, and listening to National Public Radio all day, they just got louder.”

John Rhead, a psychiatrist in Maryland who wrote a book about voices, said there are three typical perspectives on what the voices really are. One is that they are a “biochemical” problem causing “auditory hallucinations.” The second is more dreamlike, that “your unconscious mind is asserting itself into your awareness.” And the third is that “you are hearing actual voices from entities that are not part of you.”

In clinical settings, Rhead said, the first two perspectives are beginning to blend, and even the third, which he called shamanism, is becoming more accepted.

“Not everyone who hears voices is psychotic,” said Bertram Karon, a longtime professor of clinical psychology at Michigan State University who specializes in schizophrenia. “Normal people frequently hear voices under situations where they’ve lost a loved one.”

A 2011 study estimated about 13 percent of people have heard voices at some point in their lives. According to Marius Romme and Sandra Escher, the Dutch researchers, only one-third of those who hear voices become psychiatric patients.

But it is most common for hearing voices to arise out of a period of trauma – and the voices often are distressing, Karon said. They may say degrading things to the patient, order them not to socialize with people, or urge them to hurt themselves or others.

Britz’s voices told her “they were omniscient, they were omnipotent,” and she was worthless, she said.

Scott Marshall, who spoke at a recent Montgomery County meeting, said he noticed a few years ago that Aaron, a 50-year-old man in his care, “would kind of stare off in the distance, or maybe talk under his breath or respond to stuff that I couldn’t see, I couldn’t hear.”

Aaron never told anyone about the two tiny men who were always around – not until Scott asked him, gently, what their names were.

“John and Johnny. They’re in their 20s. One is mean most of the time, and the other is only mean sometimes,” Marshall said. Over time, Aaron became more comfortable, and now he’ll not only laugh when the voices make a joke, but he’ll let Scott in on the joke.

“I can’t imagine the fear he must have had. Not necessarily with his voices, but with talking to someone about it,” Marshall said.

In a revolving door

For Harden, the voices started out not as a symptom, but as a coping mechanism.

“I had no one to talk to about what was going on inside of me, and that’s when [Snooks] came around,” said Harden, who said she deeply loved her grandmother but lived in fear of the beatings she delivered. Harden kept quiet when she was sexually abused by a male relative from age 11 to 13. By age 16, she had been caught in the revolving door of the mental-health system.

Harden said her life turned around about a decade ago, when Montgomery County began offering a more collaborative recovery system. A new, female, psychiatrist stopped trying to force medication on her. Together, they worked out a plan for Harden to live independently and maintain some stability.

Soon, she was able to acknowledge that the voices were still there, without fearing that would land her back in the hospital.

Nancy Weiman, who retired recently as Montgomery County’s deputy administrator of mental health, said when she started in the field in the 1970s, if a patient admitted to hearing voices, “it was likely, first off, that there were no questions beyond that, and, secondly, that it was an indication that your medication needed to be increased. And it is likely that you would not be someone they consider for discharge from the hospital.”

When she attended a Hearing Voices Network meeting in 2011 and heard people talking about their voices openly, she said, “It made me cry. What a waste it was all those years ago, that a person would not be able to move from an institution to a place in the community for a phenomena that we now understand much better.”

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Intervoice was set up to support the International Hearing Voices Movement, celebrating the diversity and creativity within it. We do what we can to share information and connect people with groups, networks and resources.

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