Schizophrenia and the person

We no longer speak of ‘schizophrenics’, ‘schizophrenic patients’, or ‘psychotics’. The common, and in my opinion correct, nomenclature is ‘people (or clients) with schizophrenia’ or ‘a person with a psychotic disorder’. This change of names reflects the way we nowadays look at the nature of this illness. There is a person and there is a disease. This view fits the modern approach towards severe mental disorders. Davidson and Strauss (1995, p. 45) speak in respect to this approach about the disorder model: ‘the illness … is an entity in and of itself that has entered into the life of an otherwise healthy person’. Schizophrenia is an illness like diabetes, people suffer from it, but with the help of medicine and good treatment advice, they can live with it.

This approach towards mental disorder, which is based on a biomedical model, links up nicely with psychosocial rehabilitation practice. ‘The psychosocial rehabilitation concept of the person is based on a literally physical interpretation of the self, applying the metaphor of handicap and broken body to impairments of the person’ (Estroff, 1995, p. 85). It is a useful and practical model, in which psychiatrists, psychosocial workers and ‘consumers’ meet one another — this model reflects the daily practice of Western psychiatry.

However the question is to what extent this distinction between person and disorder really corresponds with the experience of a person suffering from a severe mental disorder. Von Trotha, (1995, p. 185) describes strikingly die Unmöglichkeit, eine Psychose zu erfahren (the impossibility of experiencing a psychosis). One experiences no ‘psychosis’ but a vision, mortal terror or a persecution by the CIA. A person with a psychosis is — at least in part — the psychosis itself.
They gossip about me, all over town. They call me a whore and they publish in the newspaper that I’m dead. The terrible thing is that I cannot do anything about it. Everybody knows about it except me. I’m always asking my brother and my sisters, what’s going on? But they act as if they just don’t know. It’s a shame that the only person in town, who knows nothing about it, is me. I have a right to know. It’s really frustrating to live like that.

The differentiation between person and illness might be an adequate coping strategy but it is often not in accordance with the patient’s experience. For the one who should relate — the person or the ‘self ’ — is psychotic (Kusters, 2004, p. 27). The person has to deal with a reality which apparently no one shares and is completely thrown back on his own. ‘The idea of fighting the disease, having distance from symptoms, making the separation between a sick or not sick self — all these require an intellectually unacceptable separation of symptoms from subject’ (Estroff, 1989, p. 195). More often mental health workers are helping themselves rather than the patient by using this distinction. When there is a distinction between persons and symptoms we can do something with the patient. We can help the patient to handle the symptoms. Without this distance there is only the psychotic person left with a strange fever in the eyes. We must be aware of ‘the depths to which mental illness may implicate and unsettle one’s sense of self ’ (Estroff, Lachicotte, Illingworth et al., 1991, p. 363).

I’m the prince of the Seraphim. They have chosen me three years ago and because of that they are playing tricks with me. They put a bug in my back tooth and they broadcast everything I say on the radio. I cannot study anymore. In fact I can do nothing all, because they are playing these games. One day they will build a castle for me. They told me. But know I can do nothing. I have to wait.
If we really want to know a person with schizophrenia, we need a broader concept than the contemporary mix of the biomedical model and the psychosocial rehabilitation. This model fits our society because ‘psychosocial rehabilitation is based on and embodies a particularly Western and idealized concept of personhood — a formulation that equates health with factors and attributes such as agency, autonomy and social activity’ (Estroff, 1995, p. 84). What we really want from people with schizophrenia is for them to be normal again. This in itself is not the problem — the problem is that our Western society has this particular definition of normality: to be independent, productive and socially engaged. What Estroff (1995, p. 88) is asking for is more attention to the interior life of people with a severe mental disorder, ‘self determination is not the issue here — subjectivity is’.

Davidson and Strauss (1992, 1995) represent a group of scientists and clinicians who see the person themselves as a crucial factor in the long-term outcome and the process of recovery. They assume that the ‘rediscovering and reconstructing of an enduring sense of the self as an active and responsible agent provides an important, and perhaps crucial source of improvement’ (1992, p. 131). They propose a life context approach, in which ‘the person’s life is the organizing construct’ (1995, p. 49, original emphasis). We can regard this model as a first step towards a person-centered approach to schizophrenia.

But we should not lose sight of Estroff ’s critical look upon the particularly Western concept of personhood. The question remains how this reawakening of a sense of self develops. Partly it will be by executing activities, however trivial in the eyes of outsiders, like keeping turtles in a terrarium or a job as a doorman in a supported-housing project. In addition to that, people with schizophrenia will have to experience themselves again as a person: as a meaningful unity. Attention to their own peculiar meaning, their personal experience and life history, is a necessary condition for recovery wherein health and illness should no longer be regarded as opposites, but as a unity within that one unique person. The experience of oneself as a meaningful unity is never an individual matter; a person becomes his/her meaning in a specific culture. Therefore we need to take a closer look at the anthropological contribution to schizophrenia.