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A Phenomenology of Disability
Experience anticipates a philosophy and philosophy is merely an elucidated experience.
--Maurice Merleau-Ponty, Phenomenology of Perception 1
Disability is not simply a physical affair for us; it is our ontology, a condition of our being in the world.
--Robert F. Murphy, The Body Silent 2
In Being and Time, Martin Heidegger states that his purpose is to "raise anew the question of the meaning of Being." 3 In this essay, I hope to raise anew the question of the meaning of being disabled in order to describe the ways in which the experience of disability anticipates a philosophy, specifically the philosophy of phenomenology. In order to do so, I will look at three autobiographies that deal with the experience of disability caused by neurological damage. These three autobiographies--Oliver Sacks's A Leg to Stand On, Nancy Mairs's Waist-High in the World, and Jean-Dominique Bauby's The Diving Bell and the Butterfly--are at once neurological and phenomenological case studies that seek to describe nothing less than the disabled body in the world. 4 The body breaking down is the key to a crisis that then leads each author to raise anew the question of the meaning of being.
The three authors share the fact that they all have reached adulthood before disability sets in; thus, a before-and-after structure is established in each case. However, the etiology and prognosis of each case is quite different, and these differences, in turn, affect each individual's situatedness in the world: Oliver Sacks describes a traumatic injury to his left leg and the lengthy recovery from that injury; Nancy Mairs describes the slow but gradual degeneration of bodily [End Page 209] ability that is characteristic of multiple sclerosis; and Jean-Dominique Bauby describes the sudden and catastrophic onset of extreme paralysis after a stroke, occurring with full alertness to his situation--a condition called, appropriately enough, locked-in syndrome. My three phenomenological and neurological cases are meant to reveal not a universal experience of being-disabled-in-the-world, but rather the particularity of such experiences, despite the reduction of such particularities under the universalizing sign of "disability."
In his book, The Body Silent, Robert Murphy provides a personal account of his experience of disability as the result of a spinal tumor, as well as an ethnographic account of the culture of disability. Trained as an anthropologist, Murphy utilizes his skills at participant observation honed in the Amazon forest to describe the "impact of a quite remarkable illness upon my status as a member of society." 5 Murphy notes that, for the disabled, "not only are their bodies altered, but their ways of thinking about themselves and about the persons and objects of the external world have become profoundly transformed. They have experienced a revolution of consciousness. They have undergone a metamorphosis." 6 In this essay, I will first look at Heidegger's discussion in Being and Time of the breakdown of instrumentality and then consider this notion in regard to the breakdown of the instrumentality of the body itself, with particular reference to Merleau-Ponty's discussion of bodily motility in Phenomenology of Perception. I will then turn to my neurological and phenomenological cases in order to discuss the specific conditions in each: of breakdown and recovery in the case of Sacks; of breakdown as incremental and perhaps taken-for-granted in the case of Mairs; and of breakdown as catastrophic and integrally connected to suffering, solitude, and death in the case of Bauby. I will conclude with a discussion of the imperative, which all of these writers express, to describe in writing the experience of disability in particular and the experience of the body-in-the-world in general, and to show the ways in which disability defamiliarizes and denaturalizes not only the experience of the body-in-the-world but also the experience of language itself.
In the beginning is an interruption. Disease interrupts a life, and illness then means...