Re: recovery/schizophrenia/voices

Barbara Tooth (
Thu, 03 Jul 1997 14:04:31 +1000 (EST)

Hi everyone joining this discussion. I have just read all the responses and
these are my comments since I last put forward a rather rushed response.
(Mind you this one will be no less rushed).

Lindsay states he no longer uses the term schizophrenia and while I agree
with his comments whole heartedly, they are a bit idealistic (sorry Lindsay)
in our everyday working lives. For instance had I not used the label for our
current research we wouldn't have received the funding. The proposal was
threatening enough. It raises the dilema of having to prostitute ourselves
to receive grants from less enlightened and more entrenched people in the
mental health system. Yet I also believe we have a responibility to break
down these barriers. I know of quite a few cases of suicide following the
Port Arthur incident because some people who have schizophrenia were scared
they would end up like Martin Bryant. Clearly this was due to very poor
media etc and heaps of misinformation but it happened. Some people we
interviewed were subjected to horrible incidents of verbal abuse while
walking down the street after this incident. How do we deal with this?
Labels are self serving for health professionals but then that is why they
were developed isn't it, as a way of communicating amongst professionals.
Also some people do want a label. They want something that validates their
experience. So whilst some do not like having the label, others do and who
are we to discount them?

I also noted from my response to Rob Adelman how much the use of terminology
such as compliance evoked very much an "us and them" response from me. This
is something I don't usually do, but I usually don't talk about compliance
either. How easy it is to slip into old patterns.

The voice hearing experience is fascinating and I agree much more notice
needs to be taken of content. It is interesting how much meaning they have
for people and how they are not always contrued negatively. For anyone who
is interested in the voice hearing experience I would strongly recommend
contacting Ron Coleman email Ron is involved
in the hearing voices network in England and has written books on the
subject. He also runs workshops for other people who hear voices and teaches
about their management. Ron has had a diagnostic label and hears voices and
is an extremely articulate and vocal person about his experiences. He is
really good value. Likewise for Dr Patricia Deegan in America. Patricia has
a diagnosis of schizophrenia and still hears voices and was in a back ward
for some time yet she has managed to complete her PhD in psychology. In
short I think the only way the understand these things is to ask the
experts, those who have the experience. Yet I still maintain the
relationship has to be different if people are really going to be open. This
is not merely anti-psychiatry rhetoric.

Rob talks about the denial issue and finding some way of working with people
in some way of managing their illness. I think just being there, available
and more as a friend than a health professional is what the people in our
research have asked for. Also the majority of people found other consumers
to be the ones with whom they wished to talk, and they found the contact
they had with them far more useful than the contact they had with health
professionals. Denial and resistance are terms I have yet to hear anyone who
has a psychiatric disability use. It just doesn't seem to make sense to
them, so there is a definate message there. It also raises the issue of how
meaningful Rob's ratings of high vs low insight will be. ie who determines
them? Re insight - can't it really only be understood in terms of how the
person who has the disorder construes the experience? Chris Steven's work
seems to fit. Surely Kelly's position makes the most sense.

I'd also agree with Esteban's comments. I can't remember the researchers but
isn't there a big study going on about the similarity of delusions in
western culture and the experience of sharmans in eastern cultures? Now this
is really interesting stuff. Many times I have discussed people's psychotic
experiences with them and it is generally the case that it is easy to
understand where they come from.

I'm sure this will continue in Seattle.


>I will try and read the latest responses from Bill, Estaban and Lindsay
>before I leave for a long weekend. In the meantime here is my response to
>an earlier post by Lindsay.
>The easy ones first, do you have more specific references for the following
>>There are several recent interesting texts from the cognitive therapy
>>literature including: Haddock & Slade, Chadwick, Birchood & ?, and another
>>with Kuipers. The focus is on beliefs ofcourse- but at times the emphasis on
>>personal meaning parallels the personal construct approach.
>Perhaps worse than a diagnosis of schizophrenia is the term PD, at least
>someone diagnosed as schizphrenia is told this is what they have diagnosed
>with and that there is some hope of change .... but I digress.
>Like anything else denial is not a monolithic construct. I suspect the
>fundamental issue is denying "madness" as it is popularly understood. I can
>recall a person who killed their parent while actively disturbed. This
>person periodically struggles with the idea that he/she is a sane and
>reasonable person BUT one who committed a horrific and senseless act. This
>person readily, perhaps too readily accepts the diagnosis of schizophrenia
>(in itself this may not be insight) and a need for treatment, however this
>insight can be tenuous and affected by circumstances and substances. How
>does one adequately reconcile such extremes? I don't really expect an
>answer on this one.
>Non-compliance can also be a result of concern about side effects, and even
>doctors will tell you they rarely finish a course of antibiotics. Insight
>and denial can also be processes.
>>Issues of denial and insight are interesting. Do clients deny suffering or do
>>they deny the label of schizophrenia because of the images and associations it
>>conjures? I heard an interesting use of the word denial lately in a different
>>context- men who have sex with men when married but who don't want to identify
>>as gay- labelled as men in denial. Denial of what exactly? The question of
>>schizophrenia remains. Is denial being used here in the same way as the phrase
>>"without insight"? Is the term also linked to the phrase "non compliant"? My
>>guess from the way the terms are used on the ward is that the answer is yes to
>>both. Interesting personal construct questions may look something like:
>Valid questions and an interesting way to elicit difference/constructs.
>>"How do you describe what's happening for you at the moment?"
>>"What do you understand by the term schizophrenia?"
>>A comparison of these responses would then be of interest.
>In terms of meaning, this probably varies enormously and perhaps the best
>people to answer this are those who experience 'symptoms'. Meaning can also
>be understood in several senses. Believing I am a prophet may give my life
>a sense of meaning/direction and my utterances may be related to this
>purpose, however whether all my experiences can be
>understood/interpreted/meaning be detected I don't know. Sometimes the
>theme is more understandable than the content.
>Some people simply dismiss their more unusual experiences at a later date,
>when treated. There is also the issues of double book-keeping where a
>person can hold the view that they are a US president but also someone else
>and not be troubled by this major difference in status and role, let alone
>the unlikelihood and inconsistenceies involved. Then there are people who
>will tell you that a relative is really a person purporting to be their
>relative and that their family is dead, while relaying this in the most
>matter of fact/untroubled manner.
>I suspect some of these experiences are unfathomable.
>Perhaps the point is that the choice isn't between "meaning" and "meaningless
>epiphenomena of a damaged biology", as there always remains a person who has
>these experiences, regardless of whether the experiences are understandable
>or meaning can be detected. I would suggest a more general goal of trying
>to understand how a person makes sense of their world and how they
>experience it is an important goal. Not the only one but a necessary one.
>>Currently I am trying to understand a man who used to work at the steel works.
>>He has an elaborate "delusional system" who nobody I think has ever really
>>listened to. Some may consider him thought disordered- he certainly doesn't
>>meet the neater requirements of the cog behavioural ABC approach to delusions.
>>Interestingly though he does use terms consistently- he has meanings for terms
>>such as "pardon", "perfection", "one", "first born creature of the universe",
>>"clear thoughts". These all relate in some way. "Perfection" is related to a
>>steel process. He had difficulties towards the end of his apprenticeship. He
>>talks of the steel works being at war, not receiving a pardon, and the
>>psychiatric patients getting side effects because of what the steel works did.
>>I am sure there is meaning in there, and it can't just be meaningless
>>epiphenomena of a damaged biology. Currently we have a big white board and are
>>trying to clarify meanings of these terms- as I mentioned they seem to be used
>>consistently but sometimes bear little resemblance to common usage.
>Now for the really tough one. In terms of whether voices are construing or
>the construed, it depends. Firstly, voices may not be experienced as wanted
>or even as belonging to the person. Secondly, the content may be active or
>Thirdly, where the voices are commenting on the person they are both
>construing and the construed. Voices can also be induced in people who are
>starving. These are more considerations than any form of answer. There is
>also the issue of who construes and the role of the self.
>>The narrative therapy approach (which can be considered constructivist) is
>>alos interesting. Narrative therapists (including my partner) work on
>>"revising the relationship with the problem"- where the problem in this case
>>is the voice. This has some similarites to reconstruing voices or changing
>>beliefs about voices. I wonder sometimes though whether the voices are the
>>construing or the construed?
>A not unrelated consideration concerns, what does it mean for someone who
>has been disturbed by voices and other phenomena to be well? I suspect no
>one really knows what is going on in the minds (of anyone) of people who
>respond to treatment. Do symptoms vanish, are they background experiences
>no longer dominating, do people simply stop talking about them? Where are
>they and do they go anywhere?
>For a final consideration there is the issue of how does a PCP based
>approach toward working with people diagnosed as mentally ill differ from
>other approaches.
>A few thoughts on a challenging subject, especially for people who work in
>the area.
* We're so engaged in doing things to achieve purposes of outer value that
we forget that the inner value, the rapture that is associated with being
alive, is what it's all about. Joseph Campbell *

Dr Barbara Tooth
Faculty of Health
Queensland University Technology
Locked Bag No 2 Red Hill 4059
Queensland Australia

Ph: 07 3864 3848
Fax:07 3864 3814