Reflections on Bodily Change: The Lived Experience of Disability

Abstract

My interest in the phenomenology of illness and disability has grown out of my own experience as a person living with multiple sclerosis, an incurable, progressively disabling disease of the central nervous system. Over the past twenty-eight years (since the age of 30) my physical capacities have altered in a startling number of ways. At one time or another my illness has affected my ability to see, to feel, to move, to hear, to stand up, to sit up, to walk, to control my bowels and my bladder, and to maintain my balance. Some abilities, such as sensing the position of a limb, I have lost abruptly and then slowly regained. Some, such as clear vision in one or the other eye, I have lost and regained numerous times. Other physical capacities have disappeared and never returned. I can, for example, no longer walk because I am unable to lift my legs. This latter change has, however, been gradual. For a number of years, although the muscles in my legs gradually weakened, I was able to get around “on my own two feet” using first a cane, then crutches, and finally a walker for support. Several years ago I was forced to give up the walker and begin full-time use of a wheelchair for mobility.