The disability paradox: high quality of life against all odds

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Abstract

This paper builds on the work of Sol Levine to examine a disability paradox: Why do many people with serious and persistent disabilities report that they experience a good or excellent quality of life when to most external observers these individuals seem to live an undesirable daily existence? The paper uses a qualitative approach to develop an explanation of this paradox using semi-structured interviews with 153 persons with disabilities. 54.3% of the respondents with moderate to serious disabilities reported having an excellent or good quality of life confirming the existence of the disability paradox. Analysis of the interviews reveals that for both those who report that they have a good and those who say they have a poor quality of life, quality of life is dependent upon finding a balance between body, mind and spirit in the self and on establishing and maintaining an harmonious set of relationships within the person's social context and external environment. A theoretical framework is developed to express these relationships. The findings are discussed for those with and without disabilities and directions are given for future research.

Introduction

Sol Levine was an engaging scholar who thrived on the intellectual ferment generated in the sociological study of health behavior, the activities of medical professionals and the problems of medical care delivery. He served as a mentor and colleague to senior scholars, policy makers and students alike. He continually surprised and stimulated others by asking the deeper question or by pointing to an area of research that was waiting to be explored. Sol Levine left a legacy of looking at the big picture, taking interest in those who were disadvantaged and disenfranchised and focusing on health related quality of life (Levine et al., 1983; Lerner and Levine, 1994; Lerner et al. 1994Amick et al., 1995). He urged colleagues to follow the lead of Antonovsky (1979)in moving beyond the confines of the classic biomedical model of illness ``...to address issues of salutogenesis rather than pathogenesis''; to examine the factors that account for health and well-being (Levine, 1987, 3). According to Antonovsky (1987), xii–xiii), a salutogenic orientation directs the researcher to explain how people manage well despite adverse health experiences. Taking such an approach, we decided to examine a disability paradox in this paper dedicated to Sol Levine's memory. The apparent paradox is: Why do many people with serious and persistent disabilities report that they experience a good or excellent quality of life when to most external observers these people seem to live an undesirable daily existence1?

The common understanding of a good quality of life implies being in good health and experiencing subjective well-being and life satisfaction (Goode, 1994). Conversely, one can argue that if people have disabilities, they cannot be considered to be in good health nor possess a high level of life satisfaction. People with disabilities are assumed to be limited in function and role performance and quite possibly stigmatized and underprivileged (Brown et al., 1994). Kottke (1982), 80), a distinguished expert in rehabilitation medicine, expresses this view when he states that ``the disabled patient has a greater problem in achieving a satisfactory quality of life. He has lost, or possibly never had, the physical capacity for the necessary responses to establish and maintain the relationships, interactions, and participation that healthy persons have''. Research evidence, however, presents a more complex picture. In practice, the anomaly is that patients' perceptions of personal health, well-being and life satisfaction are often discordant with their objective health status and disability (Albrecht and Higgins, 1977; Albrecht, 1994).

This paper examines the disability paradox. The paper uses a qualitative approach to develop an explanation of this phenomenon by using semi-structured interviews of persons with disabilities. Respondents are asked about their health and disability status, quality of life, and about the seeming contradiction between their experiences of poor health and disability on the one hand and their perceptions of a good or excellent quality of life on the other. We examine the processes by which the paradox is resolved in the minds of persons with disabilities. We develop a balance theory explanation for the paradox where the experience of well-being and life satisfaction is contingent on the person's achieving balance between body, mind and spirit. We discover that a balance theory, particularly emphasizing the relationships between body, mind and spirit in the context of the larger environment, explains many of the apparent contradictions raised by the paradox but that some questions remain unanswered. We argue that a good quality of life, despite adverse conditions, reflects a reconstituted balance between body, mind and spirit. Similarly, a poor quality of life reflects the absence of such a balance. We then discuss the findings from the viewpoint of people with disabilities and from the able bodied public and point to directions for future research.

Balance theories of health are the foundation of most great healing systems (Gonzales, 1997). Ancient Greek medical theory, for example, posited that health was achieved by a balance of fire, earth, air and water elements in the body. Ayurvedic medicine argued that illness resulted from an imbalance of elements in the body and between the body and the environment (Chastel and Cénac, 1998). Classical Chinese medicine is built on the notion of a balance between ying and yang energy forces in the body and interventions designed to restore equilibrium between these forces, when required. Modern Western medicine, based on germ theory, seeks to identify pathophysiologies in the body that distort or curtail organic functioning and apply interventions to restore balance in the bodily systems (Bernabeo et al., 1997). Building on this tradition, we use a balance theory framework to conceptualize equilibrium between the body, mind and spiritual components of individuals and the relationship of persons to their physical and social environment. We conceive of health and perceptions of quality of life as a result of this balance. Illness and dissatisfaction with life are a consequence of distortions in this balance.

Section snippets

The disability paradox

The disability paradox highlights the importance of personal experience with disability in defining the self, one's view of the world, social context and social relationships. This is in contrast to those who have not had such experiences. There is a decided negative bias in the attitudes and expectations of the public and health care workers toward persons with disabilities (Wright, 1988). At best, many people act with ambivalence toward or are non-supportive of persons with disabilities (Katz

Quality of life for persons with disabilities

There are myriad conceptual models and measures of quality of life and health related quality of life but no uniform consensus on which should take precedence (Lerner and Levine, 1994; Albrecht, 1996). In this paper quality of life refers to the holistic notion of well-being. It is fundamental to address disability in terms of salutogenesis (i.e. in terms of positive adaptation and resolution to stress) rather than in terms of pathogenesis; the consideration of disability in terms of the

Methods

As part of a larger study on `living with a disability', one hundred and fifty three persons with disabilities were interviewed in their homes, in community settings and in shelters for the homeless between October 1995 and July 1997 in the Chicago metropolitan area using a semi-structured interview format. In an effort to understand how persons with disabilities live their daily experiences with disability in the community, the study investigated how persons with disabilities discovered and

Analytical approach

All interviews were transcribed and translated where required. The data were managed, organized and analyzed using the principles for the analysis of qualitative research described by Becker and Geer (1982), Strauss and Corbin (1990)and Huberman and Miles (1994); Strauss and Corbin, 1997. The qualitative analysis of the participants' responses can be summarized in a number of steps. Data pertaining to quality of life questions were first sorted out between individuals who reported an excellent

Results

In examining responses to the quality of life question, we note that 54.3% of the persons with serious disabilities in the study reported that they had an excellent or good quality of life. These numbers compare with 80–85% of persons with no disabilities who report they are satisfied or very satisfied with their quality of life in various national surveys in the 1990's (Leitman et al., 1994). In these national surveys, adults with no disabilities have reported increased satisfaction with their

Conclusion

A disability paradox exists. The explanation of the paradox resulted in a framework that summarizes and organizes the concepts, relationships and factors that persons with disabilities say influence their quality of life for better or for worse. The central concept in the framework has to do with establishing and maintaining a sense of balance between the body, mind and spirit and with the individual's social context and environment. Yet, the framework explains only part of the disability

Unlinked References

Albrecht, 1992, Antonovsky, 1993, Georges, 1997, Grimby et al., 1988, Lerner et al., 1994, Strauss and Corbin, 1997

Acknowledgements

This research was supported in part by the Award For the Promotion of Human Welfare and a University of Illinois Great Cities Faculty Award to G.L.A. We also acknowledge the encouragement of David Braddock and colleagues in the Department of Disability and Human Development, University of Illinois at Chicago.

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