May 8, 2005

A trainee clinical psychologist and occupational therapist set up the first "hearing" voices group for deaf people diagnosed with psychosis. Adam James explains that for many members of the ground-breaking group it was the first time they had communicated openly to professionals about their voices experience

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Like many diagnosed with schizophrenia, 50-year-old Paul Hainsworth has lived with voices.

When at their worst they used to cause him so much misery he would become suicidal.

But for the last six years his most prevalent voice, which he calls Oscar, has been friendly and comforting.

"I first heard Oscar when I was 22," Paul recalls.

"Oscar was frightening back then, and I thought it was some kind of satellite which had beamed signals inside my head.

"My voice used to be like a policeman and would shout at me. It would sometimes say horrible things, which would make me feel like killing myself."

"But now the voice is kind, like a doctor. Sometimes if I am watching television the voice will explain to me what is happening."

"I can not see Oscar. There is no picture."

However, what is interesting about Paul's experience is that he is deaf. Yet he "hears" voices.

Paul is one of seven deaf people diagnosed with schizophrenia who, over recent months, have been meeting at a building in Balham, north London, run by the deaf charity Sign, to openly discuss, in sign language, their voices.

Facilitated by trainee clinical psychologist Jo Atkinson, herself deaf, and hearing occupational therapist Tamara Hallett, it is a ground-breaking initiative. Never before have the accounts of deaf "voice-experiencers" been so comprehensively explored.

It is also a long overdue acknowledgement of the experiences of psychotic deaf people who - with communication break-down a pervasive problem - have had a sorry history within psychiatric services.

Research in 1998 from Belgium found sectioned deaf patients spent, on average, a staggering 21 years in hospital. This was compared to 148 days for a hearing person.

While there has been no similar UK study, the Department of Health, in its Sign of the Times document published in 2003, recognised psychiatric services are routinely failing deaf people, including the estimated 6,000 psychotic deaf patients.

Most have been left to pass away their years in institutions. Paul, for example, although now living in supported accommodation, has been in psychiatric units since his late teens. This included an 18 year stint in Springfield hospital, Wandsworth, south London.

"I also know of someone who was judged as catatonic and with learning disabilities, and was locked away for 47 years. But in fact she was deaf," signs Atkinson.

Partly as a bid to demonstrate how services can be different, the "Living With Voices" group aims is to assist deaf voice-experiencers in finding ways to cope with and manage their voices. It has evolved from treatment/self-help developments within clinical psychology and the mental health service user movement.

Prompted by the work of the Hearing Voices Network, an organisation of 150 self-groups around the UK for voice-hearers, many clinicians now view patients' voices less as pathological, biologically-based "auditory hallucinations", but subjectively real and meaningful.

It is within this context that Atkinson and colleagues established the group.

Like Paul, deaf since having meningitis when aged 19 months, group members are making it clear to Atkinson that they experience voices.

"It is like a voice. I do not know where it is from," signs Paul. "It is like a radio antenna, and it is in my head, going outwards. Somewhere in my brain."

Some describe their voice as that of their father. Others say it is of a child; others invest it with spiritual significance. One believes their voice is that of Jesus.

"One group member seems to have auditory voices, but he was not born deaf," signs Atkinson.

"We also have a member who was born deaf and says he has shouting in his mind. But he says he can't hear it. It seems that he just senses it."

To hearing people, the question begging to be asked is how can it be that deaf people experience a voice?

There are no studies on the sensual properties of the voices of deaf people diagnosed with schizophrenia. Which is why Atkinson's research, due to be published next year, is likely to be met with huge interest.

Moreover, as a clinician who was born deaf she is the ideal go-between for the hearing and deaf worlds.

"A voice to a hearing and a deaf person may be different concepts," she explains.

"To a hearing person a voice is an auditory phenomenon. Whereas to a deaf person the signs used to describe their voices means someone speaking in their mind, but not necessarily auditory.

"Some deaf people say they can hear something, but if you try and pin them down they can't describe it. They just say 'arguing or shouting'. They can not describe the pitch, tone or volume.

"I think if voices are really a person's own thoughts, then feeling someone shouting in your mind is plausible.

"For example, if I argue with a deaf friend, I might say to another friend he shouted at me. But I would not mean he necessarily used his voice at all."

Atkinson concludes that most deaf voice-experiencers "have a sense of a voice" rather than hearing it. Moreover, it may depend on how much residual hearing a deaf person has.

"Very few people are totally deaf, and most deaf people have a sense of sound, even though they can't use it to hear speech."

Research also suggests that, during sub-vocal articulation, speech and sign correlate with activity in the same area of the brain, the primary auditory cortext. This may be why deaf people say they experience voices.

The Living With Voices Group members also applied cognitive behavioural therapy (CBT) techniques and those from the Hearing Voices Network when working with their voices.

Clinical psychologists, the main practitioners of CBT, understand voices as "inner speech".

In recent years psychologically-based techniques, such as CBT, have gained clinical respectability in the field of psychosis.

The British Psychological Society's seminal report "Recent Advances in Understanding Mental Illness and Psychotic Experiences" published four years ago claimed a 50 per cent decrease in relapse rates for psychotic patients following psychosocial interventions, including CBT.

More radically, and in a bid to break the taboo and pathologisation of voice-hearing, the report recognised that, in some cultures, hearing voices is regarded as a spiritual gift rather than as a symptom of mental illness. It also suggested that voice-hearing can "even be adaptive and life enhancing."

One particular value of CBT is that it can enable patients to gain more power over their voices.

This is something Atkinson and colleagues worked on in the group. It precipitated a man openly signing to his voice - an intervention which even now more traditional psychiatrists might see as a dangerous collusion with pathology.

"A member believed their voice could do anything including change the weather," explains Atkinson.

"He signed to the voice and asked it to make it snow. When it did not snow, the group discussed whether the voices were always all-powerful and decided that sometimes even voices have off-days!

"The hope is that gradually the person will gain confidence and a sense of their own ability to live with their voices."

The Living With Voices Group has been more than a chance for new clinical developments to be provided to deaf psychotic service users. It has also represented a chance for members to sign openly about their voices. For some, after many years of conventional psychiatric treatment, this has been the first time.

"Before I came to the group I did not talk to anyone about it [the voices]," signs Paul.

"But I feel comfortable in the group and I think it is very useful for me to learn from other people and also to try and help them."

See also:
Comment
April 4, 2005: No one listens - deaf people are being systemmatically excluded from equal access to mental health care in Scotland, says Willie MacFadyen
Feb 28, 2005: All mental health staff working with deaf people should learn sign language, government announces - Health Minister Rosie Winterton also wants sign language translation to be available in every GP practice

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