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Conflicts of Interest. The author reports no conflicts of Interest.
Abstract. These accounts are astonishing in their shared concerns and beautiful in their variety of styles and language. This paper employs a hermeneutic spiral to ask a series of related questions in seeking a deeper understanding of the writers' accounts of what Inga Clendinnen has called "falling down the rabbit-hole"- experiences of existential discontinuity born of illness and disability. . . . The narratives of the thirteen authors are shown to address ways of exploring intersubjectivity and situation; affliction and respect; and refusal, resistance and solidarity. In conclusion, the paper identifies five lessons that can inform the thought and actions of all those who seek an ethical response to people living with chronic illness and impairment.
Key Words. Affliction, Hermeneutics, Intersubjectivity, Marginalisation, Moral Career, Solidarity
Introduction: Genre and Methodology
Such an array of stories-richness in every line, imagery that is familiar, and metaphors that are fresh and stark! Such an array of people, in shared terrain, each with a unique pathway through mak- ing sense of what Inga Clendinnen calls "falling down the rabbit hole" (Clendinnen, 2001, p. 1) to capture the diversity of these ways through living through loss or living with an irregular body, or "thoughts that dolphin away" (Clendinnen, 2001, p. 1). Clendinnen says the story is not to be written by medicos but to be captured by the person in the attempt to live with existential discontinuity.
The cycle of lament, accusation, resistance (refusal) and restoration is apparent in the majority of the narratives. We learn of the difficulties faced by the person ... often their diagnosis and treatment, pain and uncertainty, daily struggle with impair- ment and frailty. We enter encounters which weaken and do not uplift. We hear the frustration, the anger, (even the scorn) and then we observe the struggling to be polite and to get through these meetings which so often reveal such diminished views of the person. The taking-up again of the self-talk and affirmation that says, "those outside this experience do not seem to know that I am not wrecked by this. My life is not a tragedy worthy of their pity, fear, indifference or rejection. I am not handing back my life."...