The case that follows illustrates an ethnographic flashpoint in my work on disability. Here, I offer an account of a single morning during my first research trip in Central America. The day marked my only visit to a particularly well-known institution (or shelter) for children and adults with disabilities. The following summer, I would learn that the scenes depicted below were not necessarily representative of other shelters in the country.
Still, several years later, this particular case – this single morning – continues to shape my thinking on the making and unmaking of disability personhood in everyday life. I use it not to highlight the plight of an individual or probe the lived experience of disability in certain economic and sociopolitical contexts. Rather, I approach it as the first of several encounters that prompted me to examine my preconceptions of disability outliers – cases that originally struck me as so extreme they couldn’t possibly happen closer to home, back in the U.S. People kept in closets? Surely not. Children abandoned to live in nursing homes? Impossible. A suspicion that disability was contagious? Come on. Having spent my entire life immersed in the disability community, whether personally, as an ally, or through my research, I naively assumed that I knew better.
Yet I heard such stories again and again as I moved forward with my work on family experiences with rare and undiagnosed disabilities, those confusing puzzles of sensory, physical, and intellectual difference that do not correspond to a clear label – the bodies that fall outside of diagnostic common sense.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.