Schizophrenia as social discourse: How do people use their diagnosis for social action?

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European Psychiatry 23 (2008) 549e560 http://france.elsevier.com/direct/EURPSY/

Original article

Schizophrenia as social discourse: How do people use their diagnosis for social action? Rahman Haghighat* Department of Psychiatry, University College London, Mortimer Street, London WC1, UK Received 3 April 2008; received in revised form 29 July 2008; accepted 1 August 2008 Available online 14 September 2008

Abstract ‘Schizophrenia’ can do things other than diagnose or stigmatize those so defined in that it can serve various forms of social action. Two hundred and fifty-eight randomly selected patients with an experience of schizophrenia and their relatives participated in the study of schizophrenia as social discourse. They used the diagnosis for political struggle and social leverage in such diverse forms as demonstration of the meaning of ‘a schizophrenic’, discursive intervention for ideological invitation, reclaiming personal worth (revalorization), solidarity with fellow patients and economic compensation. Despite the inherent value of the diagnosis in helping them get the right treatment, participants saw devaluing meaning in various designations for schizophrenia and, given choice, preferred certain formulations of the diagnosis over others in relation to their social discourse. To be effective, treatment models, service delivery and communication with patients must allow, interpret and incorporate their first person accounts (discourse) as a feature of their individuality and uniqueness in the therapeutic process. This is likely to increase their sense of wellbeing, empowerment and cooperation with the treatment. Ó 2008 Elsevier Masson SAS. All rights reserved. Keywords: Schizophrenia; Social discourse; Language; First person accounts; Value; Stigma

1. Introduction The objective of this study was to explore patients and relatives’ use of the diagnosis of schizophrenia as discourse, i.e., social action. It attempted to answer a number of questions: what is the essence of their narrative as to how schizophrenia has affected their lives, identities and existence? Do they have significant preferences for particular variations of the diagnosis? Which of the following designations do they prefer as a name for their condition: schizophrenic, person with schizophrenia, schizophrenia-sufferer or person having schizophrenia? What social action do they exercise by preferring a particular designation over others? Does someone HAVE schizophrenia (as someone has a broken leg), or IS someone a schizophrenic (as someone is a man or a woman)? Do patients identify (or relatives believe they identify) with

* Corresponding author. E-mail address: [email protected] 0924-9338/$ - see front matter Ó 2008 Elsevier Masson SAS. All rights reserved. doi:10.1016/j.eurpsy.2008.08.001

their abnormal experiences and beliefs, or do they consider those experiences as just one aspect of patients’ existence? Despite the value of the diagnosis, do they see any devaluing connotation (and how much) in it and its various formulations? The attribution of schizophrenia can cause anguish in people so diagnosed as not only does it refer to a deficit but also to a stigma and inevitably to value. Interactions between the stigmatized and others crystallize in society’s linguistic formulations of the diagnosis [17] which people with mental illness adopt, reject, modify or deploy as designations for themselves [14] in order to make their own discourse about the diagnosis. Preferring a certain designation to refer to oneself is to self-attribute a certain position, role or value. If there are statistically significant differences between preferences for various designations it will indicate first that people are not indifferent to these ‘titles’, and second that there are meaningful, significantly distinct points of views in the population studied. The preference can be the basis of a quantitative study using closed questions giving a choice of various diagnostic formulations. It can also be the basis of a qualitative study

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using open questions requesting people to give an account as to why they prefer a certain designation proposed by them or chosen by them from a set of multiple-choice answers. This can provide insight into their socio-political discourse. Discourse analysis is a method of discovering conceptualizations of a group of people through interview transcripts, diaries, narratives or personal notes [29]. In patients with schizophrenia, it can be used to discover how they make sense of the diagnosis, and how they use it for sociopolitical purposes. Language is not a neutral issue on which people adopt uniform positions, as language is discourse, i.e., a variety of social action. Language can construct different realities from a single object by the way it is deployed. This idea is a tenet of social constructivism in which phenomena are constructed by contexts, communications and interchanges rather than decontextualized, objective, scientific observations [11]. A designation for a new psychiatric category can reify the condition, enfeeble people so designated, magnify any perceived deficit and lead to further research and education resulting in the development of still new designations reifying new conditions. Social constructivism is not just about the reifying effect of designations. The manner someone consciously or unconsciously uses the language, influences what is perceived and can make others see things differently. Particular uses of language can construct a new reality by emphasizing, re-presenting and reformulating relations of power, causality and responsibility. The structure of an utterance can influence for example our perception of agency and create a new discourse with a different effect on us. To counteract the effect of a proposed discourse we have to make efforts and deploy another discourse but we do not always do this; rather we yield to the immediacy of the proposed discourse. Sapir [28] demonstrated how we need a new proposition to get beyond what is enacted in our mind by the immediacy of another. ‘‘‘The grass waves in the wind’ is shown by its linguistic form to be a member of the same relational class of experiences as ‘the man works in the house’’’ [28, pp. 10e11]. To clarify for ourselves the notion of agency we need to make some mental effort, shift our thinking and move to another discourse: ‘the grass is waved by the wind’. The illocutionary impact of merely uttering certain words help understand how discourse can ‘perform an act’ and why discourse is a variety of ‘social action’. There is a feeling, particularly among ‘primitive’ peoples, of close identification between a word and the thing it represents which underlies the magic of spells [27]. Boulet [4] states ‘‘the words, the discourses, are not simply the representation of our acts or our thoughts. They are not only there to transmit information, ideas or orders. They are not just the reflection of the social, they are a participating force and are active on the social and produce specific effects’’. This implies that language is not just a mosaic of words and phrases but a dynamic structure, constituted of discourse, social practice and social action, enacting relationships of power. Power is exercised not always through coercion but also through these rather abstract entities

called discourse. Discourse is ideologically-based and ideology is in the service of power. With discourse language exerts social control [3,4], and particular uses of language maintain social roles [10]. On one hand, using certain words and gestures the elite elicits work, taxes, blood and applause from the masses [20]; on the other hand, the counter-elites create whatever linguistic symbols supposed capable of functioning as a strong message to develop social consciousness and political struggle. This is how language acts as discourse in national movements for independence [6] and freedom but this view is not shared by everyone. Chomsky, despite being committed to political activism, was quick to show his surprise when asked to speak on Language and Freedom. He found the proposed title of the lecture puzzling. ‘‘In what way’’, he wondered, ‘‘are language and freedom to be interconnected?’’ [24]. The variety of the study of language Chomsky proposes resembles cutting off and studying the mathematical formulae out of textbooks of Physics, ignoring their connections to the environment and their practical application. Language is discourse and discourse is larger and more complex than the meaning of single words, sum of individual words or syntactic rules governing sentences. Discourse is the practice of social, political or moral order and like every other social act ‘‘reproduces or subverts a social institution’’ [21]. In stigmatization, discourse can be used to write down a clause in the registry of a person’s identity. Language does not need to be made of words. It can be non-verbal, e.g., acts of aggression or subtler forms of behaviour such as walking away, raising one’s voice, standing apart or throwing a glance connoting similar propositions. Though the virtual identity of a person based on who they are may remain as it is, what is expressed verbally or non-verbally can remain, at least for some time, as a smear on their identity. Categorization is a variety of discourse [8]. The attempt to distinguish whether a category is cognitive or discursive, as Edwards [8] does, seems irrelevant because a category can be both at the same time. Category as a cognitive entity can be deployed for discursive purposes and itself built up ontologically by instances of discourse. What is more important is to consider the socio-political loading of a category, i.e., its impact on power relations, such as a child saying to himself ‘‘this is a book’’ as opposed to someone shouting in public ‘‘this man is a schizophrenic!’’. When a discourse is sociopolitically loaded its variations can modulate the loading and build contrastive realities. To say ‘‘he is a person who has an experience of schizophrenia’’ instead of ‘‘he is a schizophrenic’’ would imply the need to respect the individual by referring to him as a person; positive, experiential rather than corruptive nature of the process (suggested by the word ‘‘experience’’ versus the ‘infective’ connotation of the suffix ‘-ic’); and the necessity to act fairly towards such a person (by using a more cumbersome expression to make a point in relation to the status quo). The discourse ‘‘he is a schizophrenic’’ does not denote any of these ideas and can be shown metalinguistically to imply (and so enact) objectification, distancing and stigmatization [17].

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Diagnosis has a variety of values including administrative, epistemic, research, clinical (common language), political (professional power, social control), democratic (advocacy) as well as pragmatic value in helping people recover by providing the right treatment [26]. Yet, to a patient, the diagnosis can be devaluing by the stigma of being wounded with the psychiatric illness. Furthermore, most the above values are experts’ values and the patient remains with the intrinsic undesirability of the illness and the painful conflict of how to think of the diagnosis; a summary (of a complex problem) used by the expert to help to heal them or a social stigma denoting a deficit that devalues and a dependency that diminishes them.

2. Material and method Though, in this work, people with schizophrenia were sometimes referred to as ‘patients’ this was of course not done as a stigmatizing discourse. Research demonstrates that people with psychiatric conditions prefer to be called patients by professionals [23]. Strikingly, the word patient comes from the Latin patiens (to suffer). The target population of patients was defined as those selected, using a random number table, from the list of people admitted to one of the South Camden and Islington NHS hospitals in London over the previous 10 years who knew of their diagnosis of schizophrenia for more than 6 months and were in remission at the time of the interview. Participants were asked whether they knew of their diagnosis and if yes for how long. When patients had obvious thought disorder or spontaneously reported clear-cut delusions before being assessed they were excluded until a later time when they would satisfy the entry criteria. Remission was defined as being free from psychotic symptoms. To check for psychotic symptoms, a list of thirty six standard questions from SCAN (Schedule for Clinical Assessment in Neuropsychiatry) [30] was used. The aim was to ask the same questions of every patient and, to this end, one could have used any alternative schedule or designed a set of fixed questions, and the choice of SCAN was arbitrary. This work was part of a larger study of stigmatization of schizophrenia [15]. The purpose of the assessment was not to confirm any diagnosis but to make sure that the patient’s mental state was free from delusions, hallucinations and thought disorder that could have theoretically interfered with their perception of or predisposition to enact stigmatization. The target population of relatives consisted of relatives of selected patients, who knew of the diagnosis for a period of more than 6 months. After excluding patients who were ill, untraceable, or reportedly unaware of their diagnosis, 70.8% (107 out of 151) of the patients approached consented to participate and satisfied the entry criteria. About 84% of relatives (151 out of 182) consented to participate and knew of the diagnosis for a period of more than 6 months. As such, 258 (107 patients and 151 relatives) participated in the study (41.5% patients and 58.5% relatives). Seventy-five of the relatives were relatives of seventy-five of the participating

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patients. Sociodemographics of participants are tabulated in Tables 1 and 2. As expected, there was as a statistically significant difference between patients and relatives in their social class (Table 2). One relative had never worked. The social class of one relative was unknown. Patients declaring themselves ‘unemployed’ (N ¼ 41) had either never worked or deteriorated since their last employment to a degree that the employment could not be reasonably taken as an accurate representation of their present social class. The students (N ¼ 13) were mainly in further education or university courses they attended usually irregularly or intermittently due to recurrences of their illness. It seemed appropriate to consider them in a separate group rather than assimilate them with the social class that graduates from such courses usually achieve since there were patients who had started these courses and had never completed their studies. In order to exclude participants who tend to give socially desirable answers, a standardized social desirability scale was used [16]. Participants with the highest social desirability scores, located on the extreme percentiles (above 85 centile), were excluded from all computations. This led to the removal of 38 people from the list, with no statistically significant difference between patients and relatives, bringing the total number of participants to 220. This work deployed a linguistic questionnaire as a gambit to explore the discourse of patients and relatives about the existential position of patients and how they use their diagnosis for social leverage. Instead of asking people direct questions on their private thoughts, dilemmas, conflicts and coping strategies (which, heavy for some participants, would have affected spontaneity of the responses) indirect questions were used to facilitate unrestrained expression. The questionnaire included three parts (administered separately). Part I had four questions, first an open question asking participants how they usually referred to people who have experienced Table 1 Sociodemographic characteristics of participants as a group (N ¼ 258) Sociodemographic factor

Category

Number

Age

15e29 30e44 45e59 60 Unknown Male Female Single Married, cohabiting Divorced, separated English Another European Non-European White African Asian African-Caribbean Mixed Unknown

42 82 82 51 1 134 124 107 86 65 209 21 28 173 26 16 39 3 1

Gender Marital status

First language

Ethnicity

There was no statistically significant difference between patients and relatives except for social class as tabulated in Table 2.

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Table 2 Differences in social class between patients and relatives Social class differences between patients and relatives

Patients

Relatives

Total

Social classes (I & II) Social classes (III & IV) Total

6 47 53

59 90 149

65 137 202

There was a higher proportion of people from social classes III to V in patients compared with relatives. Fisher’s exact test, P < 0.0005.

schizophrenia when they spoke about them. This was followed by a question requesting them to give an explanation (discourse) as to the reason for their preference. The next question asked them how they would like other people to refer to them if, by chance, they (participants) themselves developed schizophrenia (or if they had already developed it). The last question asked them for an explanation as to their preference. The responses to these four open questions constituted the main part of participants’ narratives. After collection of the narratives, Part II with four questions was administered. These were the same as those in Part I with the difference that participants were now given four choices from various common formulations of the diagnosis in psychiatric literature: schizophrenic, person with schizophrenia, schizophrenia-sufferer, and person having schizophrenia. The multiple-choice closed question was followed by open ones asking them to write a few lines (a narrative) explaining why they preferred a particular designation. The objective of open questions in Part II was to further explore participants’ use of the diagnosis as discourse and had been designed to elicit more responses and provide richness and variety to responses to the open questions in Part I. They were given after Part I had been collected in order not to influence spontaneous answers to open questions in Part I by the suggested designations. Based on the advocacy literature, one of the reasons people shun the diagnosis is the implicit devaluation. Part III with the last four questions asked participants to estimate any devaluing connotation in the four designations on a four-point Likert scale from not at all devaluing to very much devaluing. These questions were put at the end and were distributed after the participants had returned Part II in order not to affect their responses to earlier questions with the idea of value. Chi Square was used to compare the counts of preferences against an equal distribution of preferences for the four choices had they meant the same to the participants. ANOVA was used to compare perceived social stigmatization scores (see below) for four subgroups who saw different levels of devaluing power in the designations for schizophrenia. Discourse analysis was used for qualitative analysis of the narratives. The fundamental rules of qualitative analysis [29] were followed rigorously. These included the interrogation of initially unstructured phenomena selected for their close relationship to the problem under investigation in this case the initially unstructured narratives representing participants’ views and ‘reasons’ for their preference for a given

designation. These views had a close relationship to their discourse about their condition and were likely to represent their value-systems, feelings and dilemmas about their existential situation. The analysis also followed the rule of maximum elasticity in generating new themes from discourse phenomena [22]. The interpretations offered were not restricted to only one possible perspective for the analysis not to fall into the trap of taking the authors’ conceptualization as necessarily corresponding to those of the participants. This ensured relatively dense, multivalent conceptual development and a dialectical process between the narratives’ phenomena and the conceptualizations so that the latter approximate the participants’ constructs optimally [29]. An essential component of discourse analysis is to encourage the expression of participants’ ideas in order to enrich the narratives. Views expressed by participants were made explicit (at the point of collection of the narratives) as participants were encouraged to reflect more, narrate, conceptualize and elaborate on the themes they had ventured. The dialogue regarding the expansion of narratives (prompts such as ‘‘Ummh’’, ‘‘yes’’, ‘‘go on.’’, ‘‘tell me more please. What do you mean by that?’’) probably widened the variety of meanings as participants enriched the range and depth of their discourse. The setting was made as informal as possible and the doctor-patient approach was avoided as much as possible to remove any inhibiting effect. Shared meaning between author and participants was not assumed. This study was done with vulnerable people some of whom unable to read or write adequately. At times, the author needed to explain to them the meaning of each question, help them express what they wished to say (using prompts as above) and sometimes write down their narrative verbatim on their behalf. This interactive approach also allowed for encouraging participants to expand on their ideas and satisfied another fundamental requirement of qualitative analysis that is enquiry into what the narrator meant by certain personal expressions or particular uses of language. In the analysis, similar themes from the narratives were regrouped by constant comparison with other themes and active sampling of new relevant examples to generate conceptualizations [29]. Divergent and variant constructs were considered to deepen emergent hypotheses about the themes. Efforts were made to look at the narratives objectively and dispassionately so that the formulations of the themes remains bias-free. 3. Results It makes sense to report first the outcome of the qualitative analysis as it gives the context fundamental to the interpretation of quantitative results. 3.1. The discourse of patients and relatives The majority of participants spontaneously expressed their appreciation for being given an ‘‘opportunity to talk’’, ‘‘an

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occasion of being heard’’, ‘‘being allowed to have a word’’, ‘‘being taken seriously’’ or ‘‘a time to get some relief’’, ‘‘clear up misunderstandings’’, ‘‘defend themselves’’ and for being allowed to tell their story their ‘‘own way’’. Discourse analysis revealed five main themes: Demonstration of the Meaning of ‘Schizophrenic’, Economic Compensation, Revalorization (reclaiming of value), Solidarity with Fellow Patients and Re-formulation of Schizophrenia. Here, participants’ views are reported verbatim avoiding repetition of similar or identical items. The discourse of patients and relatives are reported separately unless they have a common discourse. 3.2. Demonstration of meaning of ‘schizophrenic’ A ‘‘‘schizophrenic’ is an object not a human being. Someone who has lost the traits commonly considered as human’’, said a patient. ‘‘A mad axe man; a poor little man who is homeless’’, added another. The meaning of schizophrenia was at times as fundamental as the definition of someone’s gender: ‘‘‘schizophrenic’ defines a person in the same way that ‘man’ or ‘woman’ does,’’ said another. ‘‘There would be no detachment from the illness.’’ The majority of patients disliked the term ‘schizophrenic’ and some believed that the prefix ‘schizo’ looms large in any word it is inserted: ‘‘The bloody nasty word is still there.’’ They defined it in terms of the reaction it elicits from others: ‘‘people are rude about them. Take the mickey [out of them].’’ It means a long list of negative attributes: ‘‘unpredictable’’, ‘‘abrupt’’, ‘‘scary’’, ‘‘aggressive’’, ‘‘unbalanced’’, ‘‘cripple’’, ‘‘bad’’, ‘‘violent’’, ‘‘horrible, final, operative, serious, frightening’’, ‘‘crazy’’, ‘‘negative’’, ‘‘terrible’’, ‘‘incurable’’, ‘‘definite’’, ‘‘angry, upset’’, ‘‘not so happy’’, ‘‘round the bend’’ and ‘‘liable to do anything.’’ A ‘schizophrenic’ implies ‘‘a dangerous person you don’t want to be with or speak to.’’ It is not just how ‘schizophrenic’ defines the person which matters but what sort of ‘tool’ it is. It is ‘‘very clinical’’, ‘‘not empathic’’, ‘‘permanent like a curse’’, ‘‘a label difficult to shake off’’ ‘‘a harmful influence’’, ‘‘a tag to identify people’’, ‘‘the illness itself’’, ‘‘like being called a name’’, ‘‘harsh like an insult’’, ‘‘devaluing’’, ‘‘derogatory’’, ‘‘heavy’’ and ‘‘alienating.’’ It seems to exhaust the available vocabulary: it is ‘‘something more’’, ‘‘a different level’’, and has ‘‘no explanation.’’ The relatives’ discourse, while sharing some aspects with that of patients, had specific features. A striking point was how relatives felt when they heard the word ‘schizophrenic’: ‘‘It’s like a knife in the heart when you hear it on TV.’’ One relative who had cancer said: ‘‘I’d rather have my cancer.’’ A schizophrenic ‘‘is an alien being’’, ‘‘a leper sort of thing’’, and ‘‘an ‘inhuman’ being’’ were words of another relative. ‘‘Mad. People are frightened to be in their company.’’ ‘‘Mad. Yes. I consider my son as mad.’’ ‘Schizophrenic’ means ‘‘a horror’’, ‘‘a plague’’, ‘‘a psychopath’’, ‘‘affected’’, ‘‘lunatic’’, ‘‘callous’’, ‘‘off his rocker’’, ‘‘totally changed’’, ‘‘killer and criminal’’, ‘‘strange and difficult’’, ‘‘possessed by evil’’, ‘‘out of control’’, ‘‘condemned for life’’ and ‘‘finished’’, ‘‘with no hope.’’ It is ‘‘ominous’’, ‘‘categorical’’, ‘‘critical’’,

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‘‘magnifying’’, ‘‘dismissive’’, ‘‘demeaning’’, ‘‘dehumanizing’’, ‘‘devastating’’, ‘‘denouncing’’, ‘‘insulting’’, ‘‘cold and impersonal.’’ It is an ‘‘illness with a person attached’’, ‘‘straight in your face [with] no compassion’’, a ‘‘communal label’’, ‘‘a pigeonhole used by doctors’’, ‘‘not acknowledging other parts of the persona’’, ‘‘a blanket term’’ which ‘‘blurs person and disease’’ and ‘‘makes the person invalid.’’ It ‘‘does not give people a chance to be normal’’, ‘‘gives the rest of society the licence to behave badly towards them’’ and ‘‘takes away the sense of caring and responsibility from individual to individual.’’ So ‘‘the person is distant, not a first or second person but a person spoken about’’, ‘‘locked in their illness inescapably.’’ It ‘‘is like a threat,’’ ‘‘stands out’’, ‘‘jumps on you’’, ‘‘makes patients feel mad’’ and is ‘‘harmful to the person.’’ It implies that the illness ‘‘dominates the person completely’’ who ‘‘will never be anything else.’’ In summary, participants wished to demonstrate the enormity of the meaning of the designation, the harsh connotations they had to face, and the extreme negativity they had been meted out. 3.3. Economic compensation Faced with the ‘finality’ of being considered a ‘schizophrenic’ and as a protective measure, a minority of patients had introjected the image projected by society: ‘Schizophrenics’ ‘‘because I have internalized it. This is exactly what happens out there. They put people in little boxes.’’ ‘‘It means mad people. I am used to it.’’ ‘‘That’s the way people call them so I call them the same way.’’ ‘‘‘Schizophrenic’ is a term used by me as I know so many [people] called ‘schizophrenic’ just as I am.’’ ‘‘Those who use ‘schizophrenics’ [to refer to themselves] are not really concerned they’ll be viewed in a bad light. When I am tired I [myself] do this’’, and [it’s] ‘‘what people would say anyway and I would accept it.’’ Some, if not all, of the participants with the above discourse were likely to make these justifications for economic purposes without directly admitting it. It is difficult for some people to declare their illness as a ticket to financial help. Others were more direct in their discourse using the imposed title to objectify their condition and declare their need. A range of ever stronger justifications emerged before reaching the straightforward use of the diagnosis for economic compensation. Some patients used the term ‘schizophrenic’ for compensatory purposes referring to its precision, straightforwardness, simplicity, correctness and appropriateness. ‘‘‘Schizophrenics’ because it is grammatically correct.’’ ‘‘It’s clear, concise, to-the-point and leaves no margin for error.’’ ‘‘It explains my condition. It means long-term and is easier.’’ ‘‘It is most expressive to people who have not got the experience.’’ ‘‘It’s straightforward and more appropriate.’’ ‘‘You can see a body ailment but not a mind [one]. One has to be straightforward as otherwise, according to a relative, one ‘‘was not sure if the person had got it.’’ The straightforward use of the term leads to getting social security benefits, material compensation and necessary care that reduces the effects of deprivation: ‘‘[I say] ‘schizophrenic’ because on income support book they described me as

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schizophrenic.’’ ‘‘I do not function as well as some [other] people.’’ [Schizophrenic] ‘‘is the statement of madness.’’ ‘‘It is protective. It means incurable’’; ‘‘the person is considered ill and helped more.’’ This is probably true of the unemployed and lower social classes who are likely to gain economically rather than lose, as opposed to higher social classes in which the preservation of the existing economic status by hiding the diagnosis outweighs the attraction of benefits gained with the diagnosis. A relative commented: ‘‘we are working class. We do not really worry about it. In a middle class neighbourhood it is more important to be respectful and cover things up.’’ At times, the discourse of suffering was deployed for compensation. ‘‘Schizophrenia-sufferer [means] ‘‘in need’’ ‘‘It would give the public an incentive to try to help.’’ 3.4. Revalorization (reclaiming of value) Reclaiming is a tactic that resists the effect of stigma attached to a designation by asserting positive attributes for it. The scrutiny of patients’ discourse showed that some used the title ‘schizophrenic’ as a discourse for revalorization — reclaiming the lost sense of personal value, normality and intelligence in order to withstand hopelessness. Patients referred to people with an experience of schizophrenia as ‘‘clairaudients’’, ‘‘quite creative; amusing’’, ‘‘brainy’’, ‘‘fit people’’; ‘‘interesting’’; ‘‘human beings’’, ‘‘good people’’, ‘‘bosses’’, ‘‘intelligent and able’’, ‘‘brainy’’. They are ‘‘individuals who are normal in every way despite the illness.’’ They are ‘‘going through certain trials in life in order to gain strength.’’ ‘‘I think schizophrenics are blessed’’, ‘‘they are children of God.’’ And relatives: ‘‘schizophrenia is not a terminal illness.’’ ‘‘‘Schizophrenics’ means paranormal, mystic people with psychic powers’’, ‘‘enlightened’’ and ‘‘quite clever.’’ And slogans: they have ‘‘value whether with a disease or not.’’ ‘‘It’s mad to be normal and normal to be mad. I prefer mad!’’ One has to remember that patients were in remission and the content of their discourse cannot be related to any delusion, though even if it could, the content of delusions is not devoid of wishes, feelings and needs of people with schizophrenia. 3.5. The discourse of solidarity Solidarity with other people with schizophrenia was reflected in how patients referred to them as ‘‘Babe, friends, mates, fellow, ‘hoahman’’’ (sic). ‘‘[I’d say] someone I was in hospital with. Someone I know in the day center who is schizophrenic.’’ ‘‘[I’d say] I am your dado [nearest companion].’’ ‘‘Schizophrenics are my mates.’’ Also, ‘‘people with schizophrenia are different. You feel it once you meet them.’’ ‘‘I feel something in common with them. I consider them comrades.’’ ‘Schizophrenics’ groups all people with schizophrenia together and does not distinguish between one or the other’’ (sic). ‘‘I prefer to be called ‘schizophrenic’ because it sounds [more] like a friendly term.’’ ‘‘When we talk with other schizophrenics we call each other ‘schizos’ for solidarity.’’

A large number of relatives referred to the illness in terms subsuming their solidarity with patients. ‘‘Like Ted, my son.’’ ‘‘[They] bring my brother to my mind: troubled, disturbed, misunderstood, in need of support, completely isolated. People around him not able to help or cope.’’ ‘‘They are those who have gone through the same sort of illness as my wife.’’ This discourse sometimes took the form of referring to everyone with schizophrenia with the title of the ill relative: ‘‘Mum.’’ Patients or relatives requested at times more solidarity from the public: ‘‘I assume people are my friends [I’d like] to encourage [them] not to be afraid.’’ ‘‘Say I have the illness but refer to me normally. Involve me in normal conversation.’’ 3.6. Re-formulation of schizophrenia: The discourse of suffering as opposed to the finality of being a ‘schizophrenic’ The discourse of suffering attempted to make the pain of schizophrenia better known. Faced with the overwhelmingly negative impact of the diagnosis, one can re-use it as a new discourse to build more social understanding. Reference to the idea of having ‘‘a hard time’’ and a ‘‘broken heart’’ was common in the patients’ discourse: ‘‘‘People with schizophrenia’ means people with a broken heart.’’ ‘‘I would like someone who has schizophrenia to be acknowledged as a human being who, having experienced an enormous amount of pain, has a broken heart.’’ ‘Schizophrenia sufferer’ means it’s ‘‘a form of pain’’ and ‘‘it hurts’’ and ‘‘[this is] a true statement.’’ Suffering leads to salvation: ‘‘[If I develop schizophrenia, call me ‘schizophrenia-sufferer’] as God will take me to heavens.’’ They will go to heavens as they are ‘‘victims not monsters’’, ‘‘sufferers’’ who ‘‘go through a traumatic episode.’’ ‘‘[People] in the streets call us ‘nutters’. When someone shot [some] children I was worried there would be a backlash on people with mental illness.’’ ‘‘People think we are dangerous [but] ‘schizophrenia-sufferers’ shows we are suffering’’ rather than ‘‘inflicting something on others. It conveys [this] better to people who do not know.’’ Patients in general considered that ‘schizophrenia-sufferer’ acknowledged their condition because it was ‘‘more likely to be accepted by people’’, ‘‘not so loud, not a big word’’, induced ‘‘empathy’’, and corrected ‘‘the idea of patients’ wanting to harm others.’’ The re-formulation moderated the impact of schizophrenia by making the idea of suffering explicit in order to imply that patients are, in the words of a relative, ‘‘types of people’’, ‘‘human beings’’ and to suggest temporariness and hope for recovery in the words of another relative: ‘‘‘schizophreniasufferer’ [means] just for a period of time’’ which ‘‘makes them feel better so they overcome the illness.’’ Relatives believed also that the discourse of suffering made the pain more perceptible: ‘‘Some people can suffer for years without anybody knowing. ‘‘If you say suffering [it is like] a physical illness you can see.’’ ‘‘‘Schizophrenia-sufferer’ because they must be frustrated with [it] and the response they get.’’, and the pain of its treatment: ‘‘‘Schizophrenia-sufferers’ because

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they also attend depot clinics and have been suffering through years’’, and the psychological pain: ‘schizophrenia-sufferer’ makes it more likely for the person ‘‘to be pitied than mocked’’. When referring to suffering some emphasized that the person should precede the illness: ‘a sufferer of schizophrenia’ rather than ‘schizophrenia-sufferer’ ‘‘as [in it] schizophrenia would not come first to make people jump.’’ A step further for the relatives was to completely wipe out the illness and fill its place with silence, an absent lexicon: ‘‘a sufferer.’’ A minority of patients recreated hope for themselves shunning even the idea of suffering. Why does one have to suffer in the first place? Why does one have to proclaim illness? They considered even ‘schizophrenia-sufferer’ to be too formal, ‘‘an official social label’’, carrying ‘‘chronic’’, ‘‘hopeless’’, ‘‘heavy’’, and ‘‘definite’’ connotations. ‘‘I don’t like the idea of suffering or being ill’’. 3.7. Quantitative results Participants’ responses to the closed questions as to their preference for one of the four diagnostic formulations: schizophrenic, person with schizophrenia, schizophreniasufferer, and person having schizophrenia are presented in Table 3. Most patients or relatives preferred the term Schizophrenia-Sufferer to all other terms. If these terms meant the same, one would expect almost equal groups of patients (roughly 25% each) preferring each term. This was not the case. In response to the question ‘How would you like to be called if you developed (or have already developed) schizophrenia?’ the highest percentage of patients (40%) preferred the term schizophrenia sufferers for themselves (Chi Square ¼ 13.565; DF ¼ 3; P ¼ 0.004). The highest percentage of relatives too (55%) preferred the term schizophrenia sufferer for themselves (if they were to develop schizophrenia) (Chi Square ¼ 64.188; DF ¼ 3; P < 0.0005). In response to the question ‘How would you refer to someone who has developed Schizophrenia?’ the highest percentage of patients (about 41%) preferred the term schizophreniasufferer (Chi Square ¼ 21.478 DF ¼ 3; P < 0.0005). The highest percentage of relatives too (57%) preferred the term schizophrenia sufferer (Chi Square ¼ 71.688 DF ¼ 3; P < 0.0005).

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3.8. Perceived devaluation and choice of a designation Following the hypothesis that at least one reason for any differential preference for a designation is its devaluing nature (hypothesis substantiated by the scrutiny of participants’ discourse), participants were asked to score how devaluing each of the above designations was (on a four-point scale from not at all devaluing, score ¼ 1, to very much devaluing, score ¼ 4). The linguistic devaluation score representing the devaluing loading in these designations was obtained by summing up the scores of the answers to the four questions. On the basis of this score, two groups were distinguished: those who did not perceive any devaluing loading and those who perceived such a loading to varying degrees. In the latter (88% of the total), 22% perceived mild to moderate loading, 43% moderate to severe, and 23% quite severe loading (all percentages of the total of 220 participants). As shown later, part of the 12% who claimed they saw no devaluing loading in the diagnosis did say so in order to reclaim value for people with an experience of schizophrenia and they indeed perceived a devaluing loading in the designations (see below). Participants’ perceptions of devaluation in the four terms were compared using Friedman test. Patients (Chi Square ¼ 114.465; DF ¼ 3; P < 0.0005) showed a statistically significant difference in their perception of devaluing connotations in these terms. This was the case with the relatives too (Chi Square ¼ 31.418; DF ¼ 3; P < 0.0005). 3.9. Difference between patients and relatives in how they refer to themselves, and to other patients It was hypothesized that patients are relatively more reluctant than relatives to refer to themselves with designations having connotations of illness and chronicity. When all the counts of preference for all the designations were entered into a crosstabulation for patients and relatives separately, it was revealed that though most patients and most relatives preferred the concept of ‘schizophrenia-sufferer’, there was a significant difference between patients and relatives in the proportion of their preferred designation for referring to themselves (Chi square ¼ 8.427; DF ¼ 3; P < 0.05), and to other patients (Chi Square ¼ 9.825; DF ¼ 3; P < 0.05).

Table 3 Participants’ responses to two closed questions as to their preference for one of the four diagnostic designations for (1) people who have developed schizophrenia, and (2) themselves should they develop it Question

Designation

Patients %

Relatives %

How would you like to be called if you developed (or have already developed) schizophrenia?

Schizophrenia-sufferer Schizophrenic Person with schizophrenia Person having schizophrenia

40 25 21 14

55 12 17 16

How would you refer to someone who has developed schizophrenia?

Schizophrenia-sufferer Schizophrenic Person with schizophrenia Person having schizophrenia

41 28 23 8

57 13 11 19

Chi-Square test based on observed counts against the expected counts of responses assumed equal in the four categories. Counts converted to percentages for ease of comparison (P < 0.005).

R. Haghighat / European Psychiatry 23 (2008) 549e560

Table 4 shows a cross-tabulation of counts of preference by patients and relatives for different diagnostic designations for themselves. It indicates that there is a statistically significant difference between patients and relatives in their preference for at least two of the designations (P < 0.05). This difference comes from their preference for schizophrenia sufferer as opposed to schizophrenic (residuals of about 7.1 to 8.2). Comparing the counts of patients and relatives by crosstabulation using Fisher’s Exact Test results in a statistically significant difference between them (P < 0.007) which, even after Bonferroni correction, remains below 0.05. (Fisher’s Exact Test, P < 0.007 (2-sided). Bonferroni Correction: 0.007  6 ¼ 0.042). Patients, compared with relatives, tended less to refer to themselves as schizophrenia-sufferer and more to refer to themselves as schizophrenic (Fig. 1). Why do patients, compared with relatives, tend less to refer to themselves as schizophrenia-sufferer? In their discourse, patients, in general, consider schizophrenia-sufferer to be objectifying them with a career of illness and suffering without referring to their personhood. A comparison of the perception of devaluation in the term schizophrenia-sufferer by patients and relatives showed that patients perceived relatively higher devaluing connotations in the term schizophrenia sufferer than relatives (ManneWhitney U ¼ 4787.500; Wilcoxon W ¼ 13043.500; Z ¼ 2.457; P ¼ 0.01). Another evidence that some patients wished to avoid notions of ‘illness’ in their preferred designations (and relatives did less so) is that ‘person having schizophrenia’ too was considered by patients as more devaluing than by relatives (ManneWhitney U ¼ 4820.000; Wilcoxon W ¼ 13076.000; Z ¼ 2.384; P < 0.05). This was not the case as far as person with schizophrenia was concerned (P ¼ 0.111) presumably because there are more suggestions of illness in ‘having something’ than in ‘being with’ something. Why do patients compared to relatives have a relatively higher tendency to refer to themselves as schizophrenic? Participants as a group had identified devaluation in the term schizophrenic with nearly half (46%) considering it as very Table 4 Cross-tabulation of patients and relatives’ preference for a term to refer to themselves if they developed or had already developed schizophrenia Participants’ preference for a diagnosis for themselves Schizophrenia sufferer

Person having schizophrenia

Person with schizophrenia

Schizophrenic

Count Expected Residual Count Expected Residual Count Expected Residual Count Expected Residual

Total Chi Square ¼ 8.427; DF ¼ 3; P < 0.05.

count

count

count

count

Patients Relatives

Total

37 45.2 8.2 13 13.8 0.8 19 17.1 1.9 23 15.9 7.1 92

108

71 62.8 8.2 20 19.2 0.8 22 23.9 1.9 15 22.1 7.1 128

33

much devaluing (Fig. 2). The ManneWhitney test was used to verify whether patients’ relatively higher preference for schizophrenic vs. schizophrenia sufferer (compared with relatives) was due to the patients’ perceiving schizophrenic as any less devaluing than relatives. There was no statistically significant difference (ManneWhitney U ¼ 5812.500; Wilcoxon W ¼ 10090.500; Z ¼ 0.173; P ¼ 0.863, not significant). So if patients did not consider ‘schizophrenic’ as less devaluing than relatives did, what else then in the term ‘schizophrenic’ made them use it relatively more often? 3.10. Experimental evidence of reclaiming As mentioned above, this work was part of a larger study [15] in which, using SSQ (Standard Stigmatization Questionnaire) participants’ perceived stigmatization scores were obtained (scores representing their perception of exclusion from transactions such as working with other people, teaching children of other people, marrying close relatives of other people or living in their close neighbourhood). An ANOVA test showed that there was a statistically significant difference (Sum of Squares: 11.022; DF ¼ 3; Mean Square: 3.674; F ¼ 3.157; P < 0.05) between perceived social stigmatization scores for the four subgroups of patients who saw four different levels of devaluation in the term schizophrenic (very much, a little, not much, not at all). This is shown graphically in a plot of the means of stigmatization scores as a function of the amount of devaluation perceived in the terms by the four groups of patients (Fig. 3A). The group of patients who declared the term ‘schizophrenic’ as ‘not at all devaluing’ had paradoxically relatively high scores in their perceived stigmatization. By their relatively high scores they implied that society does not want to work with them, accept 60 Patient, n=92

55 50

percent of Total

556

Relative, n=128

40 40

30

25 20

10

12

41 0

38

220

Schizophrenia sufferer

Schizophrenic

Fig. 1. Patients vs. relatives’ preference for the term ‘schizophrenia sufferer’ or ‘schizophrenics’ to refer to themselves. Note the relatively higher tendency of patients to identify themselves as schizophrenic and their relatively lower tendency to refer to themselves as schizophrenia sufferer. Fisher’s Exact Test, P ¼ 0.007.

R. Haghighat / European Psychiatry 23 (2008) 549e560

them as neighbours or come into partnership with them, for the fact that they are diagnosed as ‘schizophrenic’. And yet, as a reaction to this exclusion, rejection and devaluation, they reclaimed that ‘schizophrenic’ is not at all devaluing or indeed should not be so. The chart shows that those patients who say they perceive ‘not much’ devaluation in ‘schizophrenic’ have a similar tendency but to a lower extent. These two groups actually report they perceive a level of social rejection and devaluation disproportionate to their claim that ‘schizophrenic’ is not at all or not much devaluing. A scrutiny of Fig. 3A shows that the ‘Not at all’ group and, to a lower extent, the ‘Not much’ group seem to reclaim little devaluation probably as a defence for the high social exclusion they perceive. On the contrary, the perception of social exclusion is relatively low for the ‘A little’ group and increases for the ‘Very much’ group proportionate to the devaluation they perceive in the term ‘schizophrenic’. These findings are is absent when one considers the equivalent plot for the relatives. Though relatives do use the term schizophrenic for reclaiming purposes they do so much less. Contrary to what is the case with ‘schizophrenic’, patients do not use terms such as ‘person having schizophrenia’ for reclaiming (Fig. 3B) as such terms already acknowledge some subjectivity and personhood. There is no sharp rise in perceived exclusion by patients who consider the term ‘patient having schizophrenia’ as ‘Not at all devaluing’ (Fig 3B). Instead, the perception of exclusion from transactions is proportionate to the perception of devaluation in language. 4. Discussion One needs to acknowledge the limitations of analyzing participants’ narratives to investigate their discourse in other settings. The study did not extend to observing naturalistic interactions where one can see how various terms are used to achieve particular social action and how these uses and actions vary from one context to another. All the same, asking people simple, but charged questions about their designationsdand so their power and statusdopened up diverse lines of rich discourses the contexts of which are often reported by participants themselves. 50 46

percent

40

30 26 20 16 10

11

0 Very Much Devaluing

A litle Devaluing

Not Much Devaluing

Not At All Devaluing

Fig. 2. Is ‘schizophrenic’ devaluing? Responses of 220 participants. Chi Square based on expected equal counts of responses. P < 0.0005.

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4.1. Use of same form of discourse to accomplish multiple social actions That patients and relatives would not consider designations for schizophrenia as equivalent is demonstrative of: (a) their anxiety about the diagnosis of an illness such as schizophrenia, its significance and implications; and (b) their allegiance to a particular discourse, i.e. the ideological stance on the diagnosis including an implied political request for reconsideration of personal attitudes. The narrative of people with schizophrenia and their relatives shows they use the diagnosis as social discourse for political leverage, social action and improving their existential situation. Barrett [1] suggests that clinicians represent two possible versions of schizophrenia to patients (two discourses), one as distinct from the person (schizophrenia-sufferer), and the other as pervading all aspects of the person (schizophrenic). It could be that these suggestions and other influences are picked up and adopted by patients or relatives shaping their self-concept. For example, the staff expectation that patients should suffer from schizophrenia (partly due to staff’s need to establish a channel for empathy) may shape patients’ view of what is happening to them. According to Goffman [12], peopledin order to manage impressionsdact as different performers in different contexts. One can argue that some patients may take up, in one context, a certain discourse and performance in relation to their diagnosis, and another discourse and performance in a different context. A patient may present himself as a ‘schizophrenic’ in social security forms he delivers to the benefits clerk; as ‘occasionally moody’ to a potential partner; and as ‘depressed in the past’ to an employer. Though patients in general, as intensely as relatives, believe that the term ‘schizophrenic’ is devaluing, some patients prefer the term for revalorization (reclaiming), solidarity with other patients, or economic compensation while relatives seem to have fewer reasons to consider ‘schizophrenic’ a worthwhile designation. The discourse of relatives and advocacy organizations is directed at getting patients exonerated by emphasizing they have an illness and are suffering. This preference for schizophrenia sufferer seems partially based on the Christian tradition of regarding the sufferer as worthy of care, concern and cure [18]. It also emphasizes the ideas of work, suffering and struggle by people who tread a ‘normal’ trajectory [1]. The label ‘schizophrenic’, though in general more stigmatizing to patients (compared to ‘schizophrenia-sufferer’) is also more versatile to them as a discourse. Economic compensation, using the attributed diagnosis, is a defense against deprivation and despair and a tactic for hope. Despite the fact that the adoption of a ‘discredited’ identity can undermine self-concept and contribute to the perpetuation of ‘a mental patient’s identity [9], it happens that social services provide them with material benefit for their diagnosis. This was confirmed by the discourse of those patients who choose ‘schizophrenic’ to refer to themselves and others. This combination of a tendency to avoid identification with an ‘ill’ persondsome patients’ tendency to avoid the term schizophrenia suffererdand other patients’ reclaiming and

R. Haghighat / European Psychiatry 23 (2008) 549e560

Mean Perceivd Transaction Exclusion Score

558

.1

.5

A

.4

B

0.0 -.1

.3

-.2

.2

-.3 -.4

.1

-.5

0.0 Not at all devaluing

Not much devaluing

A little devaluing

Very much devaluing

Is Schizophrenic Devaluing as a Diagnosis?

-.6 Not at all devaluing

Not much devaluing

A little devaluing

Very much devaluing

Is 'Patient Having Schizophrenia' Devaluing as a Diagnosis?

Fig. 3. (A) Patients’ perceived exclusion from transactions as a function of the devaluation they perceive in the term ‘ Schizophrenic.’ The perception of social exclusion is relatively low for the ‘A little’ group and increases for the ‘Very much’ group. The ‘Not at all’ group and, to a lower extent, the ‘Not much’ group seem to reclaim little devaluation probably as a defence for the high social exclusion they perceive. Patients do not use all designations for reclaiming purposes. (B) A comparison with A shows there is no sharp rise in perceived exclusion for patients who consider the term ‘Patient Having Schizophrenia’ as ‘Not at all devaluing’. Instead, the perception of transaction exclusion is proportionate to the perception of devaluation in language. The ordinate shows z scores. N ¼ 92.

compensatory use of the term schizophrenic seem to be responsible for the difference between patients and relatives in their preference for the term schizophrenic. To take pride in a hitherto pejorated term, and to openly accept it as designation for oneself challenges negative attitudes. The movement for the deaf or the black in the United States [25] is an example: ‘‘The deaf are intelligent’’, or ‘‘We’re proud of being deaf.’’ A group of patients with schizophrenia may reclaim: ‘‘Being put through such a trying experience we are courageous getting along with our lives. We are schizophrenics and are proud of it.’’ In this context the word ‘schizophrenic’ would almost have the connotations of something ‘heroic’ and the suffix -ic imparts positive overtones (it can impart positive or negative overtones, e.g., artistic, syphilitic). Reclaiming is likely to lead to selfempowerment, autonomy, self-esteem and feelings of selfrespect. A drawback of reclaiming is its being pushed to extremes in that the person may not want to seek treatment in order to remain in the condition he has re-evaluated as ‘positive’. Yet reclaiming is likely to improve the situation of the stigmatized by promoting confidence and dispelling prevalent discrediting views. Reclaiming may also lead to reinforcement of in-group solidarity by means of promoting shared dignity, courage and resistance. However much its effect, reclaiming is cost-effective as it only uses the very diagnosis to create a discourse of value. Solidarity can be a defence against the menace of isolation and despair. When people feel threatened they come together to feel more confident and hopeful. Diagnosis can be used as a discourse to request solidarity from in-groups and outgroups. Solidarity is likely to enhance self-esteem and reinforce confidence when people are faced with stigmatizing attitudes and practices. 4.2. Discursive intervention: Challenging the denial of personal stigmatizing attitudes Discursive intervention is the promotion of a particular discourse in society’s order of discourses. It is used by people

with schizophrenia as a political invitation to change existing attitudes by proposing alternative formulations of the diagnosis. It may be argued that using one formulation of the diagnosis for another is merely a cosmetic change draining social discontent into a harmless channel sparing fundamental economic structures that promote inequality, creating an illusion of progress. This argument sounds justified if these people’s demand is defined as a mere request for ‘kinder words’. Political correctness is misconceived in that its aim is not simply to reduce verbal disrespect towards the stigmatized rather it is to challenge existing attitudes and invite people to adopt new attitudes. This is supported by the data from this study in that stakeholders deploy their diagnosis provocatively and/or reformulate it challengingly in order to question the existing psychiatric and/or social discourse. They are not simply asking others to be kinder to them; rather they are proclaiming that the existing orders of the world are not immutable. Discursive intervention challenges and invites at the same time: challenge to whoever has a stigmatizing attitude, and invitation to whoever might be sympathetic enough to join the cause [5]. Thus, to favour the use of ‘schizophrenia sufferers’ as opposed to ‘schizophrenics’ is not necessarily mistaking linguistic symptoms for the social reality of their lives. The discriminatory component of the stigmatizing attitude can be non-linguistic: segregation, distancing, discrimination, coercion or confinement. Yet these are enactment of some underlying discourse and are themselves discourses. Discourses can come in chains of ever expanding related discourses. A linguistic discourse can lead here to a discourse enacted economically there to a discourse enacted politically. Also, patients’ request as a group to be referred to as ‘schizophrenia-sufferers’ rather than ‘schizophrenics’ reflects the social reality of patients’ solidarity, reshapes the idea of them being sufferers, makes an attempt to reconstitute a new identity and engages interlocutors in a discourse of value. A linguistic debate becomes, as such, a reminder of stigmatization, an instrument that induces constant questioning of personal attitudes and a self-enquiry device that challenges the denial. One can use the preferred linguistic forms

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as a political message for inviting further debates in order to produce sensitivity and awareness. There is a well-known history of repetitive changes of designations for people with learning difficulty, each new term acquiring, after some time, the discrediting connotations of the previous ones. Yet, the effect of change of a designation is desirable, even if temporary. Discursive intervention can be a tactic of scratching at the surface with the strategy of always looking at the core. It aims at engaging people in a discourse of value as a means of promoting shifts in attitudes [13]. The future status of a new designation depends on the features of the group with which it is associated. If the group moves into the mainstream of society and is given respect the new designation becomes prestigious. If the new group is excluded from the mainstream or its status declines, the new linguistic form becomes stigmatized [19]. As such, new terms will be incorporated in the dynamics of the social system and become semantically biased. Yet, the effect of the change of a designation is desirable even if temporary. ‘‘Telling people that their renaming practices are futile and they should therefore stick to existing labels, however unsatisfactory and pejorative they have become, is like saying to someone with a chronic headache what’s the point of taking aspirin? You know you’ll have another headache later!’’ [5, p. 147]. Reviewing brochures of advocacy organizations such as MIND shows that discursive intervention is practiced and encouraged by patients and advocates. This was confirmed by a number of participants in my survey by comments such as ‘‘I don’t like that expression [schizophrenic] because it’s a very old word.’’ If we suppose that de-stigmatization starts by paying attention to the requests of the stigmatized we need to heed the message. Accommodating their request is also a sign of solidarity with them. Would discursive intervention help change practices? It would be incorrect to suppose that formal or informal acts of prescription (such as guidelines or objections to certain usages at meetings) have an immediate or overwhelming effect on people’s linguistic practices; there will be resistance and inertia as well as acceptance, and language practices that result are extremely variable [5] but they undoubtedly incite debates and self-questioning. Would discursive intervention, on its own, promote fundamental psychological changes for example in those initiating the discourse? Campaigns of language planning have resulted in significant psychological changes in the stigmatized when seen from the perspective of earlier experiments in the 1970s. In those experiments people were sent journal articles to evaluate. Some received the articles with the name of a male author; others exactly the same articles with the name of a female author. All participants, both men and women, evaluated the articles as more scientific when they believed that the author was a man [24]. A subsequent experiment at Harvard examined whether those who had reformed their use of male generics had also changed their thought processes. Undergraduates who either had or had not reformed their usage in their written work were asked to draw pictures to go with sentences such as an unhappy person could still have a smile on his/her/their face. The results showed that

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although there were still more male pictures regardless of the pronoun used and regardless of whether the participant had reformed their written usage, women (rather than men) who had reformed their usage produced more female drawings regardless of the pronoun used [24]. Would discursive intervention, on its own, promote fundamental social changes? Since the US feminist campaigns for non-sexist usages starting in the 1960s there have been more changes in language practices but only modest social improvements such as smaller wage differences between females and males and modest increases in the proportion women in higher paying jobs [6]. Yet, those modest improvements are likely to have been promoted with the help of the associated discourse (even though there is no evidence for or against it). According to the conflict theory [7] change results from the competing interests and values of different groups each contending with the others for power. Thus each instance of discursive intervention is, at least in part, demonstrative of a power struggle with those in power trying to maintain the existing system and the oppressed trying to change it to increase their power [6, p. 179]. The ability to change terminology may not cause social change but indicate growing political power [2]. Discursive intervention by suggesting that existing orders of discourse are changeable establishes a political agenda in the negotiation for liberation and empowers people, as producers of the new discourse, to engage in struggle, assert, contradict and challenge the established order of discourses and take further action in situations where they habitually consent to the status quo. 4.3. Conclusion: Patients discourse must re-enter psychiatric services The scrutiny of patients’ discourse suggests that they have pointed perspectives on their diagnosis and use discourse for social leverage. People can reformulate stigma, express their needs and get relieved when they re-voice their narrative therefore first person accounts must re-enter services for the mentally ill to help people make sense of their social and existential predicaments. This is supported by the participants’ spontaneous expression of relief for being given the opportunity of telling their story their way. People use discourse not only to make changes in the outside world but also changes in their inner world. A tactic for standing up to the ‘assault’ of the diagnosis with its implication of ‘being finished’ is to reformulate it to gain some personal understanding of one’s condition as well as control and hope for recovery. First person accounts allow the suffering to be acknowledged by others, be shared and at least partly disowned. It allows people to ventilate their feelings, build up personal explanatory models, have a share in the re-interpretation of their history, claim more personal space by pronouncing their narrative and become entitled stakeholders. Patients’ political and ideological invitations, such as solidarity with fellow patients (Schizophrenia-sufferers are my mates), reclaiming neutral or positive connotations for the illness (This is an illness like any other. Schizophrenics are chummy) and the reformulation of the diagnosis

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(‘Schizophrenia sufferer’ because it’s a form of pain) should be supported to promote a user-created emancipatory discourse. To be effective, treatment models, service delivery and communication with patients and relatives have to encourage, interpret and take account of their individual discourse. Mental health workers need to elicit clients’ narrative as a means of showing respect and establishing therapeutic rapport with them. This includes not only enquiring about and discussing patients’ and relatives’ preferences, wishes, anxieties about the diagnosis, their position in the world and existential situation but also incorporating their narrative in their therapeutic programme as a feature of their individuality and uniqueness. It is in this way that a better understanding of people with experience of schizophrenia may become possible and their participation, empowerment and emancipation more of a reality. References [1] Barrett R. The psychiatric team and the social definition of schizophrenia. Cambridge: Cambridge University Press; 1996. [2] Bendix EH. Linguistic models as political symbols: gender and the generic ‘he’ in english. In: Orasanu J, Slater MK, Adler LL, editors. Language, sex and gender: does a difference make a difference?. Ann N Y Acad Sci, 327; 1979. [3] Bolinger D. Language, the loaded weapon. London: Longman; 1980. [4] Boulet J. Construction sociale du sens dans des entretiens d’ouvriers et d’ouvrieres. Paris: Universite´ Paris VII; 1985. [5] Cameron D. Verbal hygiene. London: Routledge; 1995. [6] Cooper RL. Language planning and social change. Cambridge: Cambridge University Press; 1989. [7] Dahrendorf R. Class and class conflict in industrialized society. In: Translated, revised, and expanded by the author. First published in German 1937 as Soziale Klassen und Klassenkonflikt in der industriellen Gesellschaft. London: Routledge and Kegan Paul; 1959. [8] Edwards D. Categories are for talking: On the cognitive and discursive bases of categorization. Theory Psychol 1991;1(4):515e42. [9] Estroff SE. Making it crazy. Berkeley, California: University California Press; 1981. [10] Foucault M. The archaeology of knowledge. Sheridan-Smith A, transl.

[11] Gergen KJ. Realities and relationships: sounding in social construction. Cambridge, MA: Harvard University Press; 1994. [12] Goffman E. The presentation of self in everyday life. USA: Anchor Books; 1959. [13] Haghighat R. A unitary theory of stigmatization. Br J Psychiatry 2001; 178:207e15. [14] Haghighat R. A Preventive strategy for schizophrenia: from primitive drives to development of a new society. In: Grispini A, editor. Intervention for schizophrenic disorders. Rome: Giovani Fioriti; 2003. p. 130e58. [15] Haghighat R. The development of an instrument to measure stigmatization: factor analysis and origin of stigmatization. Eur J Psychiatry 2005;19(3):144e54. [16] Haghighat R. The development of the Brief Social Desirability Scale (BSDS). Eur J Psychol, www.ejop.org/archives/2007/11/the_ development.html 2007. [17] Haghighat R, Littlewood R. How should we call patients who have schizophrenia? A sociolinguistic analysis. Psychiatr Bull 1995;19(7): 407e10. [18] Jackson S. Acedia and sin and its relationship to sorrow and melancholia. In: Kleinmann A, Good B, editors. Culture and depression. Berkeley: University of California Press; 1985. [19] Labov W. Sociolinguistic patterns. Oxford: Blackwell; 1972. [20] Laswell H. Politics: who gets what, when, how. New York: McGrawHill; 1936. [21] Pateman T. Language, truth and politics. Lewes: Jean Stroud 1980. [22] Richardson J. The handbook of qualitative research methods for psychologists and the social sciences. London: BPS Blackwell; 1996. [23] Ritchie CW. Patient or client? The opinions of people attending a psychiatric clinic. Psychiatr Bull 2000;24:447e50. [24] Romaine S. Language in society: an introduction to sociolinguistics. Oxford: Oxford University Press; 1994. [25] Sacks O. Seeing voices. Berkeley: University of California Press; 1989. [26] Sadler JZ. Values and psychiatric diagnosis. Oxford: Oxford University Press; 2005. [27] Sapir E. Language. Ency Soc Sci 1933;9:155e69. [28] Sapir E. Selected writings. In: Mandelbaum DG, editor. Los Angeles: University of California Press; 1963. [29] Stanghellini G, Ballerini M. Qualitative analysis: its use in psychopathological research. Acta Psychiatr Scand 2008;117:161e3. [30] Wing JK. SCAN: Schedule for Clinical Assessment in Neuropsychiatry. Geneva: WHO; 1992.