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People Who Hear Voices Need Science-Based Advice

06/06/2013 10:32 EDT | Updated 08/06/2013 05:12 EDT

Many perfectly healthy people have auditory hallucinations. However, auditory hallucinations can also often be part of the chaos of a psychotic illness. In recent years, numerous groups have developed to assist "voice hearers," as some wish to be called. Unfortunately, most of these groups don't want to recognize the very different needs of people with severe mental illnesses.

Frequently, hearing voices groups encourage people to reject any diagnosis of mental illness, or "psychiatric labels," they may have been given. They encourage participants to listen closely to their voices to investigate their meanings and origins. Encouraging people to focus on their voices when they may be having a hard time differentiating between what's real and what's not real can be very poor advice.

The voice-hearing groups are part of the powerful and well-funded "alternatives" or "mad" movement connected to psychiatric survivor groups who believe psychiatry harms people who are different. A generous source of financial support in the last couple of decades has been the billion dollar a year budget of the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA). Created to serve the needs of people with serious mental illnesses, this federal agency instead joined forces with movements that often deny the existence of mental illnesses. For guidance on connecting to hearing voices groups, just visit SAMHSA's website.

The damage that SAMHSA has done to people with psychotic illnesses is finally being examined in the hearings of a U.S. Congressional Subcommittee. While failing to educate the public about science-based ways of understanding psychotic disorders, SAMHSA has used its billions to nurture the development of a counter narrative. This narrative sees all mental distress as arising from social injustice or from trauma, usually from abusive families. Books linking schizophrenia to capitalism have become bestsellers.

Vancouver has seen a growing interest in the hearing voices movement. The centre for these and similar beliefs promoted by Mad in America is a local Unitarian Church. Steven Epperson, the minister, and his wife Diana sponsor a group that meets twice a month to listen to presentations from Mad Radio.

Diana Epperson spoke last week on a Hearing Voices panel at an annual educational event sponsored by Vancouver's Strathcona Mental Health Team. The other panelists included an occupational therapist (OT) who started a hearing voices group in North Vancouver. Also on the panel were two voice hearers, employees of Vancouver Community Mental Health Services, who recently ran a hearing voices group which included some people with mental illnesses and some without.

Ms. Epperson provided an account of her perspectives as an ally of voice hearers. She wants to normalize not medicalize serious mental illness. She spoke admiringly of the work of psychiatrist Joanna Moncrieff, the author of Demedicalizing Misery: Psychiatry, Psychology and the Human Condition. Since Moncrieff chooses to ignore the vast data about the benefits of anti-psychotic medications, she isn't a source of wisdom for those us who have actually witnessed anti-psychotic medications restore our family members to sanity.

Ms. Epperson believes that what is needed is greater acceptance of "emotional diversity." She wants us to celebrate the "beauty, strangeness, and uniqueness" of the human imagination. She expressed her staunch opposition to the "indignity of forced treatment." Not mentioned was the fact that countless people have benefited from the involuntary treatment of the illnesses that they couldn't understand they had.

One of the Vancouver panelists showed her recent interview with Ron Coleman, from Intervoice, the International Hearing Voices Network. This is a group that encourages questioning the use of medications. Co-sponsored by the Unitarian Church and Vancouver Coastal Health authority, Coleman's recent Vancouver visit included a presentation for service providers.

The presentation on the Vancouver hearing voices group included the evaluations from the participants who appreciated the supportive atmosphere. Several useful strategies for managing negative voices did emerge. These included ignoring the voices or talking back to them.

Many people might want to be part of a nurturing group providing advice on how to respond to disturbing voices or other difficult experiences, since underfunded mental health services haven't met these needs. It's problematic that the only group meeting these needs for voice hearers uses ideas that don't support science-based ways of understanding their illnesses.

Often clients only learn about relevant scientific research from the infrequent and very short appointments they have with the too few psychiatrists who are available. The hearing voices movement can undermine people's trust in this medical help that might be crucial to their wellbeing.

The groups promote other ideas that are troubling. For instance, while the meaning of positive voices seems linked to spiritual experiences, people with negative voices are encouraged to try to trace them to early abusive experiences.

A crucial omission from the panel was acknowledgement of the real danger this kind of group poses for the substantial number of people who lack insight into their psychotic disorder. People struggling with psychotic symptoms shouldn't have their weekly support group emphasize the meaning of auditory hallucinations.

Embedded in the presentations were the expected jibes at the "medical model" of mental illness. The OT, for instance, erroneously told the audience that the "medical model" always understands voices as a symptom of a disease. It is widely known among psychiatrists that many people without mental illnesses hear voices. No responsible psychiatrist would diagnose someone with schizophrenia just because they hear voices.

The presenters criticized psychiatry for getting people to ignore their voices. I'm not sure why this advice is perceived as oppressive when coming from a psychiatrist but useful when coming from a peer. The people I know who received this advice from their psychiatrists benefited when they had fragile connections with reality; the advice kept them and others safe.

This event was packed and the atmosphere was reverential. Many service providers were present and we were told that there are plans to expand the hearing voices groups.

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