The Relevance of Leisure in an Illness Experience: Realities of Spinal Cord Injury
Kleiber, Douglas A., Brock, Stephen C., Lee, Youngkhill, Dattilo, John, Caldwell, Linda, Journal of Leisure Research
In this paper we examine the role of leisure in the illness experience of men and women who have experienced a spinal cord injury (SCI). We first relate illness to contemporary discourse on constraints to leisure, then consider a narrative perspective on illness that is consistent with studies of the phenomenology of the body. Next, we describe a study of the leisure experience of people with SCI. Finally, we relate findings regarding leisure and SCI to our conception of illness.
In the abundance of research on constraints to leisure over the last ten years, constraints have been represented primarily as discrete conditions (such as lack of time, money or self-confidence) that either prevent, curtail or inhibit leisure activity (e.g., Crawford, Jackson & Godbey, 1991; Wade, 1985). Recent research on the subject has demonstrated that constraints are personally interpreted (e.g., Henderson, Stalnaker & Taylor, 1988; McCormick, 1991) and, through the use of a variety of strategies, are often negotiated to allow some degree of participation (Jackson, Crawford & Godbey, 1993). But to our knowledge no attention has been given to the idea that constraints to leisure activity might be significant in and of themselves as defining characteristics of one's self-conception. When associated with loss of ability or opportunity to do preferred activities constraints to leisure may become especially "problematic" to identity and act as "impediments to the construction and maintenance of desired identity images" (Schlenker, 1987, 274). Such problems, according to Schlenker, "produce a more intensified examination of information about self, situation and audience than would ordinarily occur" (p. 274).
The disruption of the ability to engage in preferred activities resulting from negative life events may be particularly distressful when those activities have special relevance to a person's identity. While the general dynamics may apply equally to the loss of a job or the loss of a spouse, among other events, we take as our focus here the case of spinal cord injury (SCI).
Spinal cord injuries are traumatic life events that are enormously disruptive to established patterns of living. The study to be reviewed here demonstrated those effects; but it also revealed that the constriction and loss of leisure activity figures prominently in the experience of illness for people with SCI and in the disruption that inevitably occurs to one's identity and life story. While the reconstruction of a leisure lifestyle, reestablished with varying degrees of continuity and adaptation, becomes important in the rehabilitation process, it is instructive to recognize the significance of leisure in the critical and ongoing experience of illness.
The Illness Experience
"Illness" is the term that applies to lived experience, a person's response to disease or trauma (Kleinman, 1988). Brody (1987) has said that to be "ill" is to experience both an unpleasant sense of disruption to body and a threat to one's personhood. Interest in a "narrative" formulation of illness is growing (e.g., Borkan, Quirk & Sullivan, 1991; Brody, 1987; Churchill & Churchill, 1982; Early, 1982; Kleinman, 1988; Morse & Johnson, 1991; Phillips, 1990; Riessman, 1990; Robinson, 1990; Waitzkin & Britt, 1993). From a narrative perspective, "illness" is conceived as a disruption in a life narrative, where the future-self imagined in the life-narration is made doubtful by some perceived threat to one's health. When a life-narrative is threatened, self-esteem is diminished; self-respect is largely dependent on a rational life-plan (Brody, 1987). Most illness experiences are acute, resulting in an experience of disruption in which the life-narrative is suspended In such cases the threat to health is determined to be transient, permitting a return to the former narration of the life-story. In the case of chronic illness or permanent disability, the disruption to the narrated life-story is one in which, to one degree or another, the imagined future-self is fundamentally altered. …