Speaking out

Support is growing for a network that promotes alternative ways for people diagnosed with schizophrenia to understand and manage their voices, reports Adam James

January 11, 2002

Ron Coleman used to be a chronic schizophrenic. He was, by his own admission, as mad as they come. When not compulsorily detained in hospital, commuters might have spotted him at Manchester's Piccadilly station, bearded and dishevelled, shouting back at abusive voices that tormented him.

For 12 years, doctors tried to "cure" Coleman with cocktails of anti-psychotic medication and 40 courses of electro-convulsive therapy. It all failed. He had as good as resigned to his psychiatrists' view that his voices were an "auditory hallucination" - a symptom of schizophrenia. His voices were not real, he was told. He should ignore them.

But then, in 1991, Coleman's life made a dramatic u-turn. His support worker suggested he attend the meeting of Manchester-based group Hearing Voices Network, a self-help organisation for people, many of them diagnosed schizophrenic, who hear voices.

Coleman recalls: "In the meeting someone said to me: 'Ron, your voices are real.' Now imagine what it is like to think the world was flat and to discover it was round. I carried the words 'your voices are real' around with me for years. I was, in a sense, blinded by truth. Like Paul on the road to Damascus."

Coleman's subsequent recovery was rapid. With help from the network, which he coordinated from 1992 to 1995, he began to work with, rather than against, his voices. He assessed what and who they represented and was given the support to relate them to his childhood sexual experiences - and to see how it was the denigrating voice of his abuser that lay at the heart of his distress.

Now chief executive of Keepwell, a mental health training consultancy, employing 14 people and with an expected turnover this year of £1m, Coleman's recovery is a testimony to the impact the Hearing Voices Network can have on people's lives.

Founded in 1989 by five mental health workers, last October the network celebrated creation of its 100th self-help group for voice-hearers. Priding itself on its service user-led credentials, which Coleman largely initiated, the network has grown to be arguably the most politically and personally empowering movement for people diagnosed with a psychotic illness since Eugen Bleuler coined the term "schizophrenia" in 1911.

This growth has been matched by a gradual shift in the attitudes of mental health professionals over the past decade. Network coordinator Julie Downs says: "We have now gained a lot of respect from professionals. In fact we had a call from a psychologist who seemed to be quite cross when we told her there was not a self-help group in her area."

It was largely the result of a cross-fertilisation of ideas between the network and psychology that led to the latter putting clear ground between themselves and medical psychiatry when the British Psychological Society's division of clinical psychology released a report, Recent Advances in Psychological Understanding of Psychotic Experiences. This recognised that, in some cultures, hearing voices "is seen as a spiritual gift rather than as a symptom of mental illness" and suggested how voice-hearing can "even be adaptive and life enhancing".

The report's coordinating editor, Anne Cooke, says: "The network has had a lot of influence. One of the report's messages is that there are various explanations [for voices] and different people find different explanations helpful. Damage has been done by professionals saying: 'I'm the expert - and this is the reason why you are having this experience.'"

To be fair, the network has not been entirely bypassed by psychiatry. Although critical of some of its associated "extreme" politics, Douglas Turkington, consultant psychiatrist at the Royal Victoria Infirmary, Newcastle upon Tyne, and author of Cognitive Behavioural Therapy for Schizophrenia, has joined his psychologist colleagues in taking on board some new concepts of "aural hallucinations". He says: "When the network first started, their ideas were totally not recognised. But I, for one, have developed a whole range of techniques."

Turkington, who views voices as a form of "inner speech", is also willing to lend credence to the spiritual understanding a patient may have for their voices, especially if it benefits patient-doctor rapport. Three years ago, and after long deliberation, he organised a clerical minister to carry out an exorcism on a patient who requested it after insisting she heard the voice of the devil.

"The experience did not cure the voices, but it was positive in that it helped the patient and I to move on together," says Turkington. "It is important to be open-minded."

Yet for psychotic patients, their first contact on an acute ward will almost certainly not be with a psychiatrist with a perspective such as Turkington's. This slow pace of change in service provision is frustrating for Coleman and others in what has been loosely dubbed "the hearing voices movement". Many are eagerly awaiting the opening this year by Keepwell of a three-bed residential unit in Gloucester for self-harming patients, some of whom will hear voices.

Coleman, who still hears voices which he "consults" when making important decisions, says: "This service will be what we have been aspiring to for years. Providers always say they are looking for a 'model' and 'evidence'. Well, we are now going to provide that. Then we will be able to say to the mental health services: 'Now you go and replicate it.'

"While some of the network's politics has not come to fruition, many of its idea have - particularly the notion of a diversity of explanations for why people hear voices. This has effected the way a generation of professionals work. And I do not think professionals would have necessarily started that particular ball rolling themselves."

Glad tidings

The Hearing Voices Network's intellectual mentor is Dutch psychiatrist Marius Romme, who co-authored Accepting Voices in 1993 with his journalist wife, Sandra Escher.

Romme advocated that voice-hearing was not necessarily a symptom of a biologically based mental illness and proposed that, throughout history, "prophets" such as Joan of Arc, Gandhi, and Jesus had heard voices. He estimated that 4% of the "normal" population hears voices.

Romme suggested that professionals should accept the subjective reality of their patients' voices and allow their patients to explore them and negotiate with them. But his bolder proposition was that the most enduring recovery tool for voice-hearers was emancipation from victim status, looking forward to an age when people would be "glad" to hear voices.

This was a message that Ron Coleman, for one, took a step further. Echoing the language appropriation of the gay and black movements, he declares himself "psychotic and proud" and longs for a time when he can "walk the streets talking to his voices and not be denied his freedom".

Such talk is unlikely to be heard in the London corridors of the Institute of Psychiatry. And what many in psychiatry have found equally distasteful is Romme's view that if a patient believes their voices are of a spiritual nature, then this should be accepted rather than labelled "delusionary".

Adam James is author of Raising Our Voices: An Account of the Hearing Voices Movement, at £5. The Hearing Voices Network: 0161-834 5768

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