about the voices of the deaf
clinical psychologist and occupational therapist set up the first
"hearing" voices group for deaf people diagnosed with
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
many diagnosed with schizophrenia, 50-year-old Paul Hainsworth has
lived with voices.
at their worst they used to cause him so much misery he would become
for the last six years his most prevalent voice, which he calls
Oscar, has been friendly and comforting.
first heard Oscar when I was 22," Paul recalls.
was frightening back then, and I thought it was some kind of satellite
which had beamed signals inside my head.
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
now the voice is kind, like a doctor. Sometimes if I am watching
television the voice will explain to me what is happening."
can not see Oscar. There is no picture."
what is interesting about Paul's experience is that he is deaf.
Yet he "hears" voices.
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.
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.
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.
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.
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.
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.
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.
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.
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.
is within this context that Atkinson and colleagues established
Paul, deaf since having meningitis when aged 19 months, group members
are making it clear to Atkinson that they experience voices.
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."
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.
group member seems to have auditory voices, but he was not born
deaf," signs Atkinson.
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
hearing people, the question begging to be asked is how can it be
that deaf people experience a voice?
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.
as a clinician who was born deaf she is the ideal go-between for
the hearing and deaf worlds.
voice to a hearing and a deaf person may be different concepts,"
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.
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.
think if voices are really a person's own thoughts, then feeling
someone shouting in your mind is plausible.
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
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.
few people are totally deaf, and most deaf people have a sense of
sound, even though they can't use it to hear speech."
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
Living With Voices Group members also applied cognitive behavioural
therapy (CBT) techniques and those from the Hearing Voices Network
when working with their voices.
psychologists, the main practitioners of CBT, understand voices
as "inner speech".
recent years psychologically-based techniques, such as CBT, have
gained clinical respectability in the field of psychosis.
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,
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."
particular value of CBT is that it can enable patients to gain more
power over their voices.
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.
member believed their voice could do anything including change the
weather," explains Atkinson.
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!
hope is that gradually the person will gain confidence and a sense
of their own ability to live with their voices."
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.
I came to the group I did not talk to anyone about it [the voices],"
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."
April 4, 2005: No one
listens - deaf people are being systemmatically excluded from
equal access to mental health care in Scotland, says Willie MacFadyen
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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