Disability, Culture, and Identity in India and USA

Abstract

In 1963, Erving Goffman was one of the first scholars in the world to identify the concept of identity as it relates to disability. In his Stigma: Notes on the Management of Spoiled Identity, Goffman theorized that persons with disability often have ``spoiled'' identity formation related to the construction of disability stigma and the negative social impact of overt physical, sensory, and cognitive differences. He focuses on the relationship between an individual who has potentially stigmatizing conditions and the agents of social control, such as people in the community, who define stigma in their context. Friedson (1965) expanded Goffman's stigma theory, specifically in terms of the field of rehabilitation. Research on disability and identity has since considered a wider range of possibilities. Rosalyn Benjamin Darling published her 2013 book, Disability and Identity: Negotiating Self in a Changing Society. In conducting research for this book, Darling found that there is a taxonomy of identities that may exist among persons with disabilities, including: (a) Resignation (passive focus on the challenges that are brought about by disability); (b) Normative typicality (a desire to hide disability and ``pass'' in the non-disabled world); (c) Personal activism (acceptance or pride for disability and orientation toward struggling for personal rights); (d) Affirmative activism (acceptance and pride for disability and orientation toward societal change and reform related to disability); and (e) Affirmative typicality (an acceptance of disability but the desire to live and work in mainstream environments). In this chapter we then discuss the beginnings of a collaborative research project in India. The aim of the project is to better understand and characterize disability identity in India. We, as authors, came to this work from very different perspectives.