Bioethics Blogs

No Judgments: Fieldwork on the Spectrum by Faye Ginsburg

Spectrum:a broad range of varied but related ideas or objects, the individual features of which tend to overlap so as to form a continuous series or sequence. (Dictionary.com)

The presence of disability in American public culture is at once increasingly visible and yet still segregated and rendered invisible. In our multi-sited ethnographic research on Disability, Personhood, and “the New Normal” in 21st America, we are especially reliant on case studies across the spectrum of disability worlds to help us comprehend how the presence of this category is expanding our understanding of humanity. To understand this uneven process, we have been tracking the presence and absence of disability across sites like schools, labs, families, arts activists, and self-advocacy organizations, both mainstream and obscure, all in New York City. Here, we invoke “the spectrum” in two ways. First, it conveys a sense of our experience of disability in our study as “the broad range of varied but related ideas…which tend to overlap”. Second, it evokes the diagnostic language used to describe the increasing occurrence of a range of complex symptoms controversially classified together as Autism Spectrum Disorder (ASD) (DSM V). Since our research often involves projects linked to ASD, our title brings together these two sets of associations.

As our knowledge of disability words deepens, we have come to expect that each case study is revelatory of the emergence of (or resistance to) “the new normal,” standing both for itself and the larger project of redrawing the social map of disability inclusion. ndeed, we encountered the new normal emerging in that most public of spaces: Broadway. Denizens and visitors to New York are probably familiar with the TKTS booth in Times Square that offers steeply discounted theater tickets for day-of performances.

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.