Pilot Study: Understanding How DeafBlind People Make Meaning of their Avowed and Ascribed Identities

Abstract

The purpose of this pilot study is to understand how DeafBlind people make meaning of their avowed and ascribed identities and how they navigate the medical-pathological descriptions used to define them. Phenomenology was used with Glickman’s Deaf Identity Scale as a framework for this study. By conducting this study, the findings will provide insights on our identity, our culture, our perceptions on both how people perceive us, and how we perceive ourselves. Baumeister, Ashmore, and Jussim (1997) mentioned, “...the broader society assigns roles to the individual and shapes the values the person holds, so that identity is also an important means by which society can influence and control his or her behavior” (p. 191). How people perceive us can profoundly influence our discernment as a Deaf, DeafBlind, or DeafDisabled person. There are two goals in this study: to share the findings with the DeafBlind community, and challenge the pathological view prevalent in studies regarding Deaf, DeafBlind and DeafDisabled individuals. These goals are achieved by providing culturally-based research from an emic standpoint revolving around the topics of DeafBlindhood. “In the study of cognition in organizations, and in social science more broadly, there are two long-standing approaches to understanding the role of culture: (1) the inside perspective of ethnographers, who strive to describe a particular culture in its own terms, and (2) the outside perspective of comparativist researchers, who attempt to describe differences across cultures in terms of a general, external standard” (Morris, Leung, Ames, & Lickel, 1999, p. 781). Since this study comes from researchers who are DeafBlind and Deaf-sighted respectively, this project is unique in the sense that it will come from both emic and etic views. Some ideas are borrowed from related findings on Deaf culture to justify the importance for this shift. “...Deaf epistemology relies heavily on personal testimonies, personal experiences, and personal accounts to document knowledge” (Holcomb, 2010, p. 471). This is supported by Napier (2002) who mentioned, “Of the various literature that has been written about the Deaf community, its language and culture, most of the works have discussed the notion of culturally Deaf people who identify as a member of the Deaf community as a linguistic and cultural minority group" (p. 141). Therefore, this project collected data from DeafBlind members justifying the need for documentations of testimonies, experiences, and knowledge of DeafBlindhood as a marginalized group. Specific themes emerged from this study: medical, culture, socialization, language, community, and accessibility. Each theme was significant for how individuals identified themselves and where they stood regarding Glickman’s scale. What stood out in this study were Glickman’s marginal and immersion scales, and how the participants responded to external factors pertaining to their identity. These findings emphasize the need for more emic studies regarding deaf people with diverse identities that have been overlooked in numerous studies. In closure, with this type of research, both Deaf Studies and DeafBlind Studies can participate in transformative work to improve connections among non-marginalized and marginalized communities.