UC Santa Barbara

What happens when a person becomes ill? What is the effect of this process of becoming a patient? What effect, if any, does this have on the individual’s psyche? This thesis asks these questions to provide a window into the process we all go through when we become ill and enter the world of medicine. In order to explore the idea of whether or not the moment of diagnosis can cause mental violence to the patient the extreme historical case of Hansen’s disease is analyzed. Known to many by its more common term, “leprosy,” which will be referred to as Hansen’s monstrous metaphor, a multimedia archival analysis is conducted to deconstruct how “leprosy” came to be a monstrous metaphor and what the effect of this is on the patient. Through discursive analysis of historical legislation, fictional narratives, contemporary newspapers and physician reports, as well as analysis of patient narratives or the autopathography the construction of “leprosy” as a monstrous metaphor evoking a socially stigmatizing and dehumanizing condition is revealed. The first chapter, which focuses on the construction of “leprosy” as a metaphor, demonstrates that medical discourse has the potentiality to build a dehumanizing social condition around a clinical diagnostic. It is then, from this social condition, that political action and governance is justified. As a result, the diagnostic moment becomes laden with not only social implications but political ones as well. The impact of this on the individual is at the heart of what this thesis aims to uncover. The second chapter is then, devoted to analyzing two different autopathographies in an attempt to uncover what a diagnosis of a disease which has been constructed into such a socially and politically laden identity, has on the individual. This is meant not only in relation to their physical health and their social or political positionalities, but to their own individual understandings of their ‘self’ and how this impacts them at the register of the psyche.

This analysis illuminates that the health narrative, or autopathography, should be considered a vital part of medical education in order to encourage holistic practices which focus on the patient as a person. These narratives, from the perspective of the patient, allow the patient’s voice to be heard in a field that so often silences it. These narratives can help close the gap between the patient and the practitioner who is often so focused on the disease, they forget the patient is not a subject, but a human. They forget that the disease is not only in a lab or an examination room, but a lived reality for a person. I analyze two autopathographies, Olivia: my life in exile in Kalaupapa by Olivia Robello Breitha (1988) and Miracle at Carville by Betty Martin (1950), written by patients who had the biological illness, Hansen’s disease. In this thesis a stark difference is drawn between Hansen’s disease and what, through Susan Sontag’s theory of “illness as metaphor,” this thesis will term as Hansen’s monstrous metaphor, “leprosy” (1978). Through analysis of both Betty’s and Olivia’s narratives it becomes clear that what they suffered from most is the monstrous metaphor “leprosy” which they have been forced to embody. In analyzing their narrations, the voices of Betty and Olivia expose diagnosis as a moment of a psychic rupture. Suddenly, they see their body through the dehumanizing and pathologizing discourse around “leprosy”. The internal reactions they describe can only be understood as alienation from one’s own body. I argue that diagnosis can be a moment of mental violence. This is not only as a result of the biological ailment, but any social condition which the diagnosis ascribes to the patient’s body as well. As a result, the social condition should also be considered part of that which the patient must contend. Annemarie Mol’s The Body Multiple (2002) argues that illness is multiple as it impacts the patient’s life in many different ways, is something different under the microscope in the lab and is yet something else to the nurse and to the doctor. Mol’s work is, therefore, a vital text which I incorporate into my own discussion of why health narratives, as they illuminate this multiplicity of illness, should be part of medical education since the practitioner should account for these multiplicities in caring for the patient.

Additionally, by analyzing this historical extreme case of an illness that has sustained a social imaginary and evokes images of zombies and “lion faces” the potentiality, and therefore, the power of diagnosis over the individual is uncovered as one that has the ability to alienate the ‘self’ from its own body. Therefore, I argue the body is a space from which the ‘self’ can become “unhomed”. By incorporating Homi Bhabha’s notion of cultural “unhoming” the body becomes an unsafe space for the ‘self’ to exist (1994). Ultimately, what this analysis reveals is the moment of diagnosis as a crucial point where the gap between the patient and practitioner must be closed by a holistic approach. This includes accounting for the multiplicity of illness as it is in this fragile moment that the patient is vulnerable to mental violence.