Proximity to Disability

Abstract

Proximity can be overwhelming. Proximity can be particularly overwhelming in these modern times, when groups and individuals find themselves in the grip of regimes demanding that they live their identities and relationships with others in particular ways. Modern individuals are supposed to find themselves in what Elizabeth Povinelli calls an intimate event of recognition: an encounter between "I" and a particular kind of "Thou," a lover or a nation-state who sees them as they truly are. Povinelli focuses on the love between modern lovers but her model holds for modern parents, whose relationship with their children is both fated and chosen, all at once. What happens when a child's embodied experience of the world renders this form of love problematic? How might their parents' responses challenge our unstated assumptions about how intimate relationships are supposed to work? Drawing on my own experiences as the mother of a multiply disabled daughter and my research on families like my own, I show how parents create the basis for an intimate event of recognition in relationships with others who don't respond in predictable ways—and the alternative social worlds that proximity to disability can create.