Communicating Schizophrenia?

Mielioikeudet.net julkaisee Markus Hervan vuonna 2011 Norjan Bergenissä Historicisation-kesäkoulussa pitämän esitelmän, jonka otsikko on Communicating Schizophrenia?


Communicating Schizophrenia?

Historicisation (Bergen 24-26 August 2011)

A summer course for PhD students arranged by NordForsk

Markus Herva

Abstract:

How to define schizophrenia? – It has to do with labeling (diagnosis/stigma). Labeling happens in interaction (communication). When a diagnosis is given, the person in question is given a label. From this on, she is called ‘a schizophrenic’. But this all happens in interaction. Interaction is between the patient and the doctor. What happens between them, I call “communication”.

Introduction.

How to define schizophrenia? – It has to do with labeling (diagnosis/stigma). Labeling happens in interaction (communication).

When a diagnosis is given, the person in question is given a label. From this on, she is called ‘a schizophrenic’. But this all happens in interaction. Interaction is between the patient and the doctor. What happens between them, I call “communication”.

Sometimes this communication does not take place in a proper way. Whether it is actually proper, is at most of the times evaluated by the doctor; that this is so, is due to the asymmetric relation between the doctor and the patient. To the extent, that ‘the schizophrenic’ is often either considered to communicate poorly (badly), or not at all.

Example. Language game a: the following situation ‘is given’ to the patient. Person A is the patient, Person B is the doctor. Person B tells he is worried. Person A is “suspected” to have a ‘mental health problem’. Person B tells the person A to send a postcard to his (A’s) parents, since they are worried, too. ((pre)supposition: psychosis of person A.)

Here are a few questions:

Are psychiatrists, of all people, in possession of inpartial, disinterested and objective consideration of facts, human beings, and reality? How come? And then, whose agent the psychiatrist (and in general, psychiatry) is?

Grammar: Most of us, i.e. people with schizophrenia, learn the grammar of illness (‘illness-grammar’) which is an application of the speech of medical professionals, family, and other patients. Does this mean, that there is an illness called schizophrenia, i.e. ‘schizophrenia-illness’?

In my own experience, the grammar was the following one: my behavior was explained with the supposition that I was in psychosis, or psychotic. And my family was worried. (The Finnish word was ‘huoli’ = concern, sorrow, care; “to be worried” = olla huolissaan). So they contacted mental health office.

Narratives of schizophrenics.

Are there correlations between people’s experiences of psychosis and brain functioning (seen with brain monitoring)? This question comes only afterwards, i.e. after the label is (and was) given.

When discussing schizophrenia, references are often made to the (patients’) brains. However, these are logically, and historically, posterior to the label given, i.e. diagnosis.

Some minor structural abnormalities of the brains are found (in post-mortem) in some patients. Also the so-called dopamine hypothesis is well-known: the dopamine synopsis are said to be hyper-active. I am not at all interested in these. Why this is so has to do with logic. It also has to do with a conviction, that the human brain in no way determines peoples experiences, behavior, or anything else.

Narratives should be examined; those of people with self-experience.

That this is so, is because in our particular case, what you see and how you see it, depends on who you are. I would rather not use the expression “point of view”. Nevertheless it can be said, that in the doctor-patient relation, your use of words, your “language” so to speak, de facto depends on your relative position (and in some cases, whether you the oppressed, or oppressor).

So, when you are a doctor, you may talk about dopamine, or if you have a somewhat different orientation, you might talk (at least, few decades ago) about the patient’s mother, or some other psychological stuff. As a patient, you don’t know much (or anything at all) about dopamine. As to your mother, you probably know, but why on earth does the doctor talk about her? Because, all you have, is your story or, in many cases, only fragments of it. What you need to do, is to put the fragments back together. And for this, you need help.

Do you get help, any help at all, getting together the pieces which are left of you: memories, feelings, maybe some incidents on your “hard-disc” which are not destroyed? Well, it depends. This is why the narratives of the people with self-experience should be examined.

Grammar of hope.

To solve the problem, we need a new grammar, a grammar of hope.

How can grammar of hope be constructed? We have to answer to the following questions: What are the meanings of “falling ill” in schizophrenia? What kind of experiences are they related with? Secondly: How are the meanings constructed in communication?

The meanings given to schizophrenia are to be approached from the point of view of the patient, the mental health professional and the general publicity. From the possibility of recovery and hope, those interactions, which create health(s), are to be found.

Then we can try and answer to these questions: How are meanings of hope created? And, what kind of communication is empowering?

Historical perspective.

Medical research of schizophrenia is so vast a field, that even the top medical experts have severe difficulties in following it. The development in the last century helps to orientate.

From the very beginning, on the side of biomedically orientated research and treatment, the therapeutic approach, in which the patient is respected and dealt with empathy (sometimes even confronted), was kept alive by some.

In 60’s, there was the growth of the criticism of psychiatry. Antipsychiatry (so called) was represented by R.D. Laing, among others. Mental institute was a prison, the patients prisoners. On the other hand, laingian community was meant to be a hostel, but people in it felt like patients.

The deconstruction of mental hospitals and hearing of the voices of psychiatric patients lead to changes, and to a new situation, in which the experiences of “mentally ill” are taken seriously in a new way.

But our research projects do not tell a sad and resentful story of people trapped forever in this dependence/independence paradox, unable to overcome the requirement to behave in ways that will be seen as ‘compliant’ (sometimes defined by people on the receiving end of services as ‘doing what you are told even when you don’t want to’) in order to maintain access to services. Ours is a hopeful story, one that points to a way to resolve this paradox and transform the lives of people diagnosed with schizophrenia. Our research shows the value, indeed the necessity, of including people diagnosed with schizophrenia in three areas – in research, in decision-making about their treatment and housing, and in public discourse about schizophrenia – to promote real change in the way people diagnosed with schizophrenia are treated and housed and to enable them to move beyond the dependence/independence paradox. Communication is central to achieving all three forms of inclusion. (Schneider B, 2010. “Hearing (Our) Voices: Participatory Research in Mental Health”. Toronto: University of Toronto Press. p. 24.)

In Bradford, Rufus May has worked as a ‘mad doctor’ with people, who have experiences thought to be, say, unusual. Also, in the University of Bradford, the term ‘postpsychiatry’ was coined by Bracken and Thomas.

Personal experience.

The victim, about thirty years of age, was lonesome and unemployed, which was a thread to bourgeois society. The shrink was worried. The patient was psychotic, denying his guilt. The more worried shrink, the more psychotic patient. So the patient had to escape.

Only when hospitalized, the schizophrenia-diagnosis was given, without further ado, to the patient due to his asocial action and lacking co-operation.

Deviant action is a symptom of schizophrenia and (afterwards; the diagnosis been given), the deviant action is explained with schizophrenia!

“The fluctuation of scientific definitions: what to-day counts as an observed concomitant of a phenomenon will to-morrow be used to define it.” (Wittgenstein put it in parenthesis)1.

Now that the diagnosis was given, no further proof of its correctness was needed: since it is easy to attribute (real or imagined) characteristics to the patient, such that there always are symptoms of schizophrenia (more or less).

Brain disease hypothesis.

Is schizophrenia a brain disease? Let us call the sentence “schizophrenia is a brain disease” the ‘brain disease hypothesis’ = X. Suppose that this sentence X does not make (any) sense. If not X, then what Y ( =’ schizophrenia is …’.)? My idea is, that we can find (some) Y by studying the narratives of people with ‘self-experience’ of schizophrenia.

My hypothesis is that schizophrenia emerges in communication between the psychiatrist and the patient. What is meant by this? Cunningham calls it ‘operational definition’. “[Identity of any given diseases X and Y is constituted] by the questions people ask and the operations people actually engage in when finding or checking the ‘identity’ of any disease.” (Cunningham A, 1992. “Transforming Plague: The Laboratory and the Identity of Infectious Diseases”, in The Laboratory Revolution in Medicine, ed. Andrew Cunningham and Perry Williams. Cambridge: Cambridge University Press. p. 213.)

Now, the clinician (psychiatrist) asks various questions from the patient. These questions are based on his (clinician’s) medical knowledge, education and on his personal working experience. Whether he considers schizophrenia a brain disease or not may vary from one clinician to another – that is, at least the centrality of hypothesis X may vary. Nevertheless, he has (or is at least supposed to have) some basic understanding of what schizophrenia is. Well, what is ‘schizophrenia’? It is a word, a word told to the ‘schizophrenic’ at some time, sooner or later. And when you have schizophrenia, you are ill.

How to get around this? I have only a partial solution. Let us still call hypothesis X the clinician’s hypothesis, which may be “more or less” the same as the original ‘brain disease hypothesis’. Whatever (X) schizophrenia is, brain disease or not, we conclude that schizophrenia is something else: Y. This Y we find out from the patients’ own stories, from their narratives.

How to historicize all of this? We have concluded that: Y. The identity between X and Y is historical. There are people diagnosed with schizophrenia. There are many stories of the survivors. By investigating their narratives, we may find out, what schizophrenia is all about. Even if we have concluded Y, and not X, we still have to find out, what is “in” X. We can and will get some understanding of it, too. There is yet something more to this matter: after all, if there still happens to be some identity between X and Y, other than historical, it is to be found.

Conclusion.

What is schizophrenia? A few years ago, I told to Jack Rosberg that I think it is a historical phenomenon. “Some people call some other people schizophrenic, and some day it will happen no more”, I told him. Who knows.

1(Das Schwanken wissenschaftlicher Definitionen: Was heute als erfahrungsmäßige Begleiterscheinung des Phänomens A gilt, wird morgen zur Definition von ››A‹‹ benützt.)” Wittgenstein L (1971) Philosophische Untersuchungen. Frankfurt am Main, Suhrkamp Verlag. 79 (Bemerkung).