Removing the “Dis” From “Disability”

• In Event: Roundtable Session 19
  In Roundtable Session: Critical Social Justice Education Through Human Rights Education Praxis

Abstract

Objective/ Purpose:

The purpose of this pilot study was to document, through feminist narrative inquiry and portraiture, the personal and work experiences of a female artist and social entrepreneur (DC) who is legally blind (Lawrence-Lightfoot & Davis, 1997). These experiences included the extant challenges experienced by DC as a woman in the U.S. with an “invisible” disability, specifically blindness acquired in adulthood.

Theoretical Framework:

The conceptual lens encompassing this study is critical disability theory with a gendered perspective. Critical disability theory (CDT) posits that disability is a social construct; as such, it may vary across social contexts and cultures, rather than remain an immutable attribute that inheres in an individual (Devlin & Pothier, 2006). A significant limitation of CDT is that an examination of the role of gendered norms in society’s construction of disability is emergent. To remedy this theoretical gap, the lens of feminist theory was overlaid to illumine the potential role of gendered perspectives in the social construct of disability.

Methods

The primary methodological tool initially informing the study was feminist narrative inquiry (Chase, 2005). In analyzing the data, the researcher used basic coding methods consistent with modified grounded theory informed by feminist theory and critical theory (Charmaz, 2010; Kushner & Morrow, 2003; Stern & Porr, 2011; Wuest, 1995). This process then sparked consideration of portraiture as a methodological lens with which to further analyze and interpret the data (Lawrence-Lightfoot & Davis, 1997).

Research Question

The primary research question informing the study was the following:
What does it mean to live and work as an adult woman with legal blindness in the U.S.?
A key sub-question was the following:
How does one construct and define an adult identity given lived experience in four cultures within the U.S.: the culture of “sight” and the culture of “blindness”? the culture of the “abled” and the culture of the “disabled”?

Results

Key emergent themes included these:

• Disability is secondary or tertiary to the primary construction of identity
• The challenge is not the disability itself, but the concomitant logistics of managing the disability in the context of inadequate social infrastructure , particularly in non-urban areas
• Economic marginalization and social isolation for the disabled in the U.S. is extant, even for those who were gainfully employed prior to becoming disabled

Significance/ Importance of Study for Audience

Portraiture of DC’s experiences in the U.S. as a woman with an invisible disability may be informative for educators, domestic policy makers, and disability advocates and activists in light of the seminal United Nations Convention on the Rights of Persons with Disabilities (UN-CRPD), which the U.S. has signed but not yet ratified. For qualitative researchers, this pilot study may add to the developing corpora of literature addressing these liminal areas in methodology: a) theoretical triangulation of grounded theory, feminist theory, and critical theory and b) portraiture as a method of inquiry to encapsulate the complexity of lived experience with a physical-sensory disability from a gendered perspective.

Author

• Michelle Yee, University of San Francisco