WAGblog

Hearing Voices Network

The Hearing Voices Network or HVN, is a Manchester, UK, consumer-driven group dedicated to people who have auditory hallucinations (AH), with branches now in the US and continental Europe, Japan and Australia as well. The Network was started in 1991 but the concept of the organization began in 1986 when a professor of psychiatry in the Netherlands, Marius Romme, met a patient who suffered from chronic AH and a deep suicidal depression, possibly as a result. This patient, Patsy Hage, read one book which comforted her, a book by Julian Jaynes, which argued that early in human history we were all guided by command AH caused by the separation between right and left hemispheres of the brain.

Romme arranged for Patsy to appear on local Dutch television aimed at other voice-hearers: 450 people called in, not all of them psychiatric patients. In fact, one third of them claimed they lived with voices without much difficulty. Romme chose 20 of these to serve as speakers for a conference on people who have AHs. One principle he always insisted on was that any interpretation of voice hearing was acceptable, no matter how unusual or bizarre. So if I tell the consumer-run group that my voices are Satan and his minioins talking to me, that interpretation must be accepted as somehow useful to me, and it then be discussed as to what such an interpretation might mean to me.

HVN is not entirely an anti-psychiatry movement, at least insofar as some members take meds and see mental health practitioners. But formally it does reject the usual specialist physician/psychotic patient relationship. Romme, as energetic leader of the "movement" speaks of those who have AHs as being like the homosexuals of the 1950s, "in need of liberation, not cure." Also, he considers psychiatry itself to be conditioned on cultural and personal oppression (shades of Thoas Szasz and "The Myth of Mental Illness"?)

Romme's research is often adduced in HVN's publicly disseminated reading material. In one study, patients with AH were studied along with non-patients with AHs. The non-patients it turned out felt they had more control over their voices, rarely sought to stop them or get rid of them, coped with them well, and understood or strove to understand them. "Helping the patient to accept the voices and actively developing coping strategies with the patient," Romme had said, "may well prove an effective adjunct to psychiatric rehabilitation."

Coping is key in HVN. THe idea is not to get rid of one's voices but to learn to deal with them, understand them, and live with them, without obeying their commands or becoming overwhelmed by them.

It is worth pointing out that hearing voices is NOT the sine qua non, necessary and sufficient, for a diagnosis of schizophrenia. Not at all. Hallucinations can occur in Alzheimers and Parkinsons, epilepsy, hyperthyroidism and migraines among others. Completely "normal" that is to say non-psychotic people can hear voices too. AHs are only one aspect of the diagnosis and not an especially necessary one. A large minority with schizophrenia never hear voices. But if one does, it is a symptom which must persist, along with several others, for months (unless treated) without longlasting concomitant exaggerations of mood complicating the picture.

A longtime friend of mine recently told me, after reading an article in the NY Times about hearing voices and HVN that she has heard voices for a long time, since childhood in fact, dead or distant people, even God, but that they are very reassuring voices and she can summom them or send them away at will. This sounded almost perfect to me and I told her I was envious of such a gift.

The problem with accepting one's voices or putting AHs on the continuum of normal experience are those who do not know they are experiencing them (many) and those whose command AHs are dangerous to self or others. We have all heard the stories of the convicted schizophrenic who killed someone in response to a command hallucination he (or she) did not recognize as a symptom of illness much less as an AH of extreme but "normal" experience. Or the person who killed him or herself under the same sort of spell, not understanding the voices were not real and the command unnecessary to obey. What the HVN proposes to do about these AHs they don't say, but I think they pose a bigger problem than the organization wants to admit. A great many people with AHs do not in fact present themselves for treatment upon first hearing voices, despite what the HVN claims. And they often get lost in the bowels of the System once homeless or poverty-stricken and unable to access health care even should it be desired. What chance is there that mental health care will be available if basic services are not? It takes some education to learn to recognize what is an AH and what is real. I know this from personal experience. All too often I mistook the first for the second and never knew the difference!

The label schizophrenia may be overly broad and does carry a stigma, but do we throw it away or do we educate people about it so that they no longer penalize one for the label? One could go either way. I personally believe that no one should be allowed, certainly no agency or governmental program, to stigmatize or stereotype an illness out of simple and willful ignorance. Education is the key and we should do all we can to let people know what schizophrenia is and is not whever we can. I tell people whenever i can that I have it, so they'll know that we can look almost normal and be in recovery and no one have the slightest inkling, even though we still have symptoms that we hide.

Posted by pamwagg at April 13, 2007 04:00 PM