The Meaning of Disability: How Women with Chronic Illness View Their Experiences

Learning one has a chronic health condition is a pivotal event in an individual's life. According to Kleinman (1988), the integrity of our bodies is so central to our belief systems that it is often assumed that "...chronic illness is a betrayal of that fundamental trust" (p.45). Charmaz (1995) notes that convictions regarding one's own identity become shaken following diagnosis with chronic illness, frequently altering both self-perceptions and self-concept. In addition, individuals face powerful emotional issues related to chronicity and acceptance of a new lifestyle that may be radically different from the one planned or hoped for prior to diagnosis (Gordon & Benishek, 1996). Living with a long-term illness often forces an individual to adjust to limitations while incurring a redefinition of self (Hayden, 1993). Due to the unpredictable nature of chronic illness, individuals face an ongoing adaptation process (Kleinman, 1988). For each person, this challenge becomes one of making meaning of the event as one works to redefine one's self in the face of illness (Hayden, 1993). Clearly, making sense of one's illness and finding meaning in this altered state is a complex process. According to Hayden (1993), the need to name the illness experience or bring voice to the event is a critical challenge. It requires recognition that an individual's definition of health shapes his or her understanding and response to chronic illness (Young & Garner, 1993). In a similar vein, Charmaz (1995) suggests that an individual goes through three stages when adapting to impairments related to chronic illness: (1) the experience and assessment of having an actual impairment; (2) the recognition that one's future will be affected due to this event; and (3) the acceptance of the illness and subsequent move to find harmony between body and self. Therefore, when faced with impending physical and functional losses, individuals are forced to "take stock" and reassess their lives from a new and changing perspective. This "restructuring of life" is an ongoing phenomenon "shaped" by both the events of illness and the commonplace life events unique to each individual (Anderson, Blue & Lau, 1991., p. 101). Terminology Difficulties Unfortunately, adaptation to illness may be hindered due to the difficulty inherent in defining terms such as impairment and disability (Harris, 1995; Stone, 1995). Sidell (1997) suggests that the recognition of chronic illness as a social phenomenon is a relatively recent one, resulting from medical and technological advances. Chronic illnesses, by nature, are long-standing problems with limited chance of recovery which may or may not cause visible impairment (Kleinman, 1988; Schreurs & de Ridder, 1997; Sidell, 1997). According to Harris (1995), disability may also be viewed as "a social phenomenon since it allows people to be perceived as a group" (p. 341). Difficulty may arise, though, in determining when an individual meets the criteria for inclusion within the group. Stone (1995) notes that while both invisible and visible disabilities often negatively affect individuals, those disabilities not readily noticeable may be "dismissed" due to the frequently held belief that disability "necessarily entails sitting in a wheelchair" (p. 417). Societal Views of Illness and Disability In addition to making meaning of the experience, many individuals are forced to adapt to the illness experience within a social climate that is frequently far from supportive. Goffman's (1963) definitive investigation regarding the concept of stigma was instrumental in denoting attributes society considers discrediting. As suggested by Schneider and Anderson (1980), stigma refers to any physical and/or behavioral characteristics that result in an individual being the victim of preconceived, negative expectations. This concurs with Coleman's (1986, p. 214) thought that not only does stigma result in "downward mobility" for the individual, but it also reflects a societal agreement that his or her differentness is unacceptable. …