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Public Culture 13.3 (2001) 533-556

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Enabling Disability:

Rewriting Kinship, Reimagining Citizenship

Rayna Rapp and Faye Ginsburg

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. [End Page 533]

Healing is used here in two senses that draw our interest as researchers. The word's immediate referent would seem to be the capacity of parents and siblings to help heal the wound of difference for the affected boy. But Oe also emphasizes the work the family has undertaken to heal the wound of difference dealt to its own kinship narrative and practice. Oe, who won the Nobel Prize in literature in 1994, has written several other books chronicling the transformations in their familial universe inaugurated by the birth of Hikari. His works have helped his family and, at a remove, his readers, to imagine an unanticipated cultural future that could give meaning and possibility to the reshaped habitus of daily life with a disabled family member. 1 Oe's compassionate and frank story of how his family came to embrace "being handicapped" is representative of a kind of shift in consciousness--disability consciousness--suggestive of a more expansive sense of kinship across embodied difference that, we argue, is essential to the growing public presence of disability in contemporary postindustrial democracies.

The proliferation of publicly circulating representations of disability as a form of diversity we all eventually share--through our own bodies or attachments to others--offers potential sites of identification and even kinship that extend beyond the biological family. In the United States in particular, such public representations of the connections (and disconnections) of disabled people and their families across embodied difference have helped to introduce a sense of public intimacy that, we argue, is crucial to redeeming the ADA promissory note of a polity "beyond ramps" (Russell 1998). The simultaneous emergence of the U.S. disability rights movement along with the escalation of reproductive and neonatal technologies has intensified cultural awareness of a range of broader issues. These increasingly both shape and destabilize contemporary kinship practices as well as debates among disability rights activists, feminists, bioethicists, and health service providers.

Such concerns engage questions about medical ethics and the complexities of reproductive choice; concrete dilemmas about how to organize the practical logistics of care for disabled children; political and distributive queries about what citizens are owed; and conceptual questions about how disability is figured discursively. While such issues are often made the subject of public policy debate, they come already anchored in the daily and intimate practices of embracing or rejecting [End Page 534] kinship with disabled fetuses, newborns, and young children. We suggest, then, that disability criticism should encompass not only...