Enabling Disability: Rewriting Kinship, Reimagining Citizenship
In trying to portray my son in the literary model known as a novel, I have passed through . . . stages. In the case of a person like him with a mental disability, it isn’t the individual himself but rather his family that has to pass from the “shock phase” to the “acceptance phase.” In a sense, my work on this theme has mirrored that process. I have had to learn through concrete experience to answer such questions as how a handicapped person and his family can survive the shock, denial, and confusion phases and learn to live with each of those particular kinds of pain. I then had to find out how we could move beyond this to a more positive adjustment, before finally reaching our own “acceptance phase”—in effect coming to accept ourselves as handicapped, as the family of a handicapped person. And it was only then that I felt the development of my work itself was at last complete. (Oe 1995: 46, emphasis added)
In 1963, when the Japanese novelist Kenzaburo Oe’s son Hikari was born with a dangerous brain tumor, Oe and his wife chose to have it removed, a process that, along with a range of other kinds of supports, enabled the infant Hikari to survive, but with a profound disability. Since then, the family has had to re-create itself and its narrative. In his book, A Healing Family, Oe describes his family’s capacity to embrace Hikari.
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We have many people to thank, first and foremost our children, who have opened our eyes to worlds more exotic than we ever imagined we would encounter as anthropologists. We thank Carol A. Breckenridge, Candace Vogler, and the editorial board of Public Culture for helpful comments, and Barbara Abrash and Simi Linton for their constructive engagement with the final draft.