Abstract
In this paper I reflect upon my personal experience of chronic progressive multiple sclerosis in order to provide a phenomenological account of the human experience of disability. In particular, I argue that the phenomenological notion of lived body provides important insights into the profound disruptions of space and time that are an integral element of changed physical capacities such as loss of mobility. In addition, phenomenology discloses the emotional dimension of physical disorder. The lived body disruption engendered by loss of mobility includes a change in the character of surrounding space, an alteration in one's taken-for-granted awareness of (and interaction with) objects, the disruption of corporeal identity, a disturbance in one's relations with others, and a change in the character of temporal experience. The loss of upright posture is of particular significance since it not only concretely diminishes autonomy but affects the way one is treated by others. Such a change in posture is, therefore, particularly disruptive in the social world of everyday life. An understanding of the lived body disruption engendered by disability has important applications for the clinical context in devising effective therapies, as well as for the social arena in determining how best to resolve the various challenges posed by chronic disabling disorders.
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References
Asch, A. and Fine, M. (Eds.) (1988).Women with disabilities. Philadelphia: Temple University Press.
Goffman, E. (1963).Stigma: Notes on the management of spoiled identity. Englewood Cliffs, NJ: Prentice Hall.
Husserl, E. (1982).Cartesian meditations: An introduction to phenomenology. Trans. D. Cairns. The Hague: Martinus Nijhoff.
Husserl, E. (1989).Ideas pertaining to a pure phenomenology and to a phenomenological philosophy: Studies in the phenomenology of constitution. Trans. Rojcewicz and A. Schuwer. Dordrecht: Kluwer Academic Publishers.
Merleau-Ponty, M. (1962).Phenomenology of perception. Trans. C. Smith. London: Routledge and Kegan Paul.
Murphy, R. (1987).The body silent. New York: Henry Holt.
Robillard, A.B. (1993) Intensive Care Unit (ICU): Exteriorization of the self AKA communication problems. Paper presented at the annual meeting of the Society for Phenomenology and Human Sciences, New Orleans, LA.
Sartre, J.P. (1956).Being and nothingness: A phenomenological essay on ontology. Trans. H. Barnes. New York: Pocket Books.
Schutz, A. (1962). On multiple realities. In M. Natanson (Ed.),The problem of social reality. Volume 1 ofAlfred Schutz: Collected papers. The Hague: Martinus Nijhoff.
Toombs, S.K. (1990). The temporality of illness: Four levels of experience.Theoretical Medicine 11: 227–241.
Toombs, S.K. (1992).The meaning of illness: A phenomenological account of the different perspectives of physician and patient. Dordrecht: Kluwer Academic Publishers.
Toombs, S.K. (1995). Sufficient unto the day: A life with multiple sclerosis. In S.K. Toombs, D. Barnard and R.A. Carson (Eds.),Chronic illness: From experience to policy. Bloomington: Indiana University Press.
Van den Berg, J.H. (1955).The phenomenological approach to psychiatry. Springfield, IL: Charles C. Thomas.
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I should like to thank Frances Chaput Waksler for her helpful comments on my work.
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Toombs, S.K. The lived experience of disability. Hum Stud 18, 9–23 (1995). https://doi.org/10.1007/BF01322837
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DOI: https://doi.org/10.1007/BF01322837