Making Health Agency: Clozapine, Schizophrenia, and Personal Power

Abstract

This thesis demonstrates how experiences of agency and health persist in spite of confining social and biological circumstances. I take the case of clozapine-treated schizophrenia, where patients are presented with both renewed hope for an independent life at the same time as undertaking an intensive physiological monitoring regimen that prioritises their life in the most immediate sense only. Clozapine patients face a high risk of chronic multi-morbidities that significantly lower their life expectancy, and they are not quite ‘cured’ of their mental disturbances pertaining to chronic schizophrenia. I demonstrate, though, how patients are able to experience a sense of what I term health agency, where we might otherwise imagine their well-being to be significantly compromised. Health agency is a feeling of control over one’s well-being, where well-being is defined in one’s own terms. It was remarkable to find it in the clinical contexts in which I was working, where very narrowly constituted definitions of health were ostensibly endorsed and imposed. But in the thick of life in the clozapine clinic, patients and institution did not occupy strict polar positions. My fine grained ethnographic work revealed how patients worked creatively with the clinical circuitries, biomedical imaginaries and temporal underpinnings of clozapine treatment to personalise their experiences and to exert subtle, personal power over their health and future prospects.

My fieldwork was based in the UK and Australia over an 18-month period (2015-2016) between two clozapine clinics. Research participants included 43 people diagnosed with schizophrenia (termed patients, hereafter) and 16 clinical staff at the clozapine clinics (termed clinical caregivers, hereafter). I conducted participant observation and 130 interviews. Drawing on my ethnographic data, this thesis explicates how health agency was available to patients in four central ways. First, health agency was part of a hopeful, personal persistence for holistic health in spite of the ‘physical,’ ‘mental,’ and ‘social’ aspects of health appearing irreconcilable in terms of clinical definitions. Second, patients were able to creatively manipulate and complement the goals of clozapine clinic blood monitoring to actively participate in the aspect of their treatment that is otherwise the furthest from patient control. Third, patients drew on the ambiguities of clozapine and other ‘health’ consumptions or behaviours to negotiate how clozapine impacted their minds and bodies. Fourth, patients utilised the temporalities of clozapine and clinical suspending of non-biological concerns to abundantly “live in the present” and harness focused energies that kept their futures open, while ephemerally suspending clinical symptoms and clozapine side effects. I suggest that patients’ self and social labour, and their quiet everyday efficacies in making their own health, problematise some previous anthropological and clinical conceptions about living with chronic schizophrenia under biomedical treatment models. I make the case for further ethnographic consideration for quiet expressions of agency within highly structured conditions.