Institutions, Agency, and Illness in the Making of Tourette Syndrome

Human Organization, Fall 2009 by Buckser, Andrew

Medical anthropology has increasingly emphasized the importance of agency in the experience of illness. As sick people rethink and contest social constructions of their symptoms, they influence both the course of their own illnesses and the larger cultural models within which they exist. By shaping the ability of people to exercise such agency, institutions play a powerful role in the making of illness. This paper explores this process in the neurological disorder Tourette Syndrome, based on fieldwork among adults with Tourette in Indiana. Institutional constraints on time, space, and movement can profoundly affect the ability of individuals with Tourette to manage perceptions of their symptoms. As a result, different institutional settings can produce radically different experiences of the disease. We can improve our understanding of the making of illness by incorporating such institutional structures into our models. In addition, understanding the interactions among institutions, agency, and illness suggests implications for more accommodating and humane institutional design.

Key words: institutions, illness; agency, Tourette syndrome, schools

Introduction

This paper explores the ways that social institutions shape individual agency and the effects of these processes on the ways that people think about and experience illness. A growing body of research in medical anthropology suggests that individual agency plays a powerful role in the making of illness. As people rethink and contest cultural understandings of their symptoms, they influence the conceptualization and even the course of disease processes. In the West, they increasingly do this within spatially distinct, bureaucratically organized institutions - not only the hospitals and clinics in which illness is treated, but the offices, factories, schools, and other institutions within which it is lived. Institutions shape both the understandings of self that underlie personal agency and the pathways through which it can be exercised. As a result, differences in institutional structures can have significant and even profound impacts on the way that people within them experience disease.

To illustrate these impacts, I will discuss the role of institutional structures in Tourette Syndrome (TS), a neurological disorder in which individual agency plays a particularly important part. Individual management of the vocalizations and physical tics associated with Tourette is a critical element of living with the disease. Tourettics must shape the ways that their tics are seen and not seen, and they often exercise a great deal of creativity and ingenuity in doing so. The range of possibility for this sort of agency depends in many ways on the institutional structures within which Tourettics live different kinds of workplaces, schools, hospitals, churches, and so on offer different possibilities for concealing, displacing, and contextualizing the movements and sounds associated with TS. Particularly restrictive institutions can limit agency to the point where they exacerbate both the physical intrusiveness and the social impact of TS symptoms. Such institutional influences, I argue, can have as great an impact as the underlying physical disorder on the development and the burden of the illness.

An understanding of the interaction of illness, agency, and institutional structure can contribute to a better understanding of the nature and development of disease. In Tourette, for example, institutional influences can explain features of the disease course that current models, which focus exclusively on neurological and cognitive maturation, do not. By incorporating institutional structures into our models of illness, we can help not only anthropologists, but caregivers and patients as well to better understand the experience of disease. We can also suggest more humane designs for institutions themselves. Institutions tend to have an interest in restricting agency, as part of their overall project to control the thought and actions of the people within them. Resisting that restrictive impulse, and structuring institutions in ways that enable agentive action by the people within them, may be a way that we can substantially ease the burden of certain illnesses within our culture.

The data for this paper comes from an ongoing ethnographic study of adults with Tourette Syndrome in the state of Indiana (see Buckser 2007, 2008). The project has conducted multiple in-depth interviews with 1 7 people from a variety of social and demographic categories, focusing on personal experience of the disease and its interaction with understandings of self.

Institutions and Agency in the Anthropology of Illness

The term "institution" has a variety of connotations in social science research (e.g., Berger and Berger 1972; Douglas 1986; Giddens 1979; Newman 1995; Saris 1995). In its broadest sense, it refers to normative patterns of thought and behavior in a society; one may speak of the institution of marriage, or of patriarchy, or of tenure, each describing a widespread conceptual pattern which tends to constrain the way that people in a given culture perceive the world. The word can also refer to something much more specific, and it is in this sense - one more akin to popular usage - that I use it here. By institution, I mean a social entity characterized by a specific physical location, a distinctive internal social organization, and an articulated purpose.1 In most cases, the physical location includes a durable built environment, such as a school, a factory, a clinic, or a farm. It may, however, take a more ephemeral form; support groups and service clubs, for example, often convene in public spaces or rented halls, manifesting spatially for a brief period and then dispersing until their next meeting (see, e.g., Mathews 2000; Merrill 1987; Swora 2001). The internal social organization, likewise, can take a number of forms, ranging from the elaborate totalizing hierarchy of a military base to the studied egalitarianism of a commune. Whatever its specific form, this social organization classifies the people within the institution and significantly constrains their behavior. The articulated purpose, finally, may range widely, from the curing of disease to the healing of society to the hastening of Armageddon. This articulated purpose is seldom the only reason people take part in the institution, but it carries a disproportionate weight in the design of physical spaces and social rules.