Openmind 133, May/June 2005
Like many diagnosed with schizophrenia, 51-year-old Paul Hainsworth lives with voices in his head. At their worst, they used to cause him so much misery he would become suicidal. But for the last five 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 ... 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 cannot see Oscar. There is no picture.'
Paul is deaf, yet he 'hears' voices. He is one of seven deaf people diagnosed with schizophrenia who, over recent months, met in a group run by the deaf charity Sign, in Balham, south London, to discuss their voices in sign languages. Facilitated by trainee clinical psychologist Jo Atkinson, herself deaf, and hearing occupational therapist Tamara Hallett, it has been 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 deaf people who, with communication breakdown a pervasive problem, have had a sorry history within psychiatric services.
Research in 1998 from Belgium found that 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 2002 Sign of the Times document, recognised that psychiatric services are routinely failing deaf people, including the estimated 6,000 psychotic deaf patients.
Partly as a bid to demonstrate how services can be different, the Living with Voices group aims to assist deaf voice-experiencers in finding ways to cope with and manage their voices. It evolved from treatment/self-help developments within clinical psychology and the mental health service user movement.
Like Paul, group members made 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.' '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, although not published until 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 it is 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 cannot 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.'
The Living with Voices group has given members a chance to sign openly about their voices. For some, after many years of conventional psychiatric treatment, this has been their 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.'