Date of Graduation

2013

Document Type

Dissertation

Degree Name

Doctor of Education (Ed.D.)

Department/Program

International and Multicultural Education

First Advisor

Shabnam Koirala-Azad

Second Advisor

Susan R. Katz

Third Advisor

Xornam Apedoe

Abstract

Documentation of the experiences of women with disabilities has remained sparse--benignly neglected, overlooked, and understudied in the academic fields of women's studies (gender studies) and disability studies (Depauw, 1996Article 25.1; Garland-Thomson, 2004). This qualitative study explored the lived experiences of inclusion, marginalization, and exclusion in the lives of women who have a permanent, non-visible (hidden) disability. It also explored the corporeal dimensions, such as issues of embodiment, of the lived experiences for women with hidden disabilities. Finally, this phenomenologically based study examined how women with non-visible, hidden disabilities articulated the meaning of living with an invisible disability.

The study utilized a phenomenologically based approach that incorporated in-depth interviewing, as described by Seidman (2006, p. ix). Participants were four adult women who resided in the U.S. and who were diagnosed with a long-term disability or chronic illness. The respective diagnosed conditions of each participant consisted of the following: Addison's disease, multiple sclerosis, Stargardt's Dystrophy, and unexplained infertility.

Participants articulately gave voice to their lived experiences of living with hidden chronic illnesses and/or disabilities. In terms of experiences of inclusion, a common leitmotif shared by all participants was the importance of self-advocacy in transforming a situation or experience of marginalization or exclusion into one of inclusion. The majority of participants also addressed the role of passing, or non-disclosure, of their condition in certain contexts, particularly professional contexts.

With regards to experiences of marginalization or exclusion, the medical-health-care establishment contributed to participants' feelings of isolation, marginalization or exclusion, particularly in the time period preceding participants' receipt of their respective diagnoses. The invisibility of participants' respective conditions also contributed to feelings of marginalization or exclusion. Participants' experiences of embodiment encompassed actions and strategies, such as self-care, for pro-actively managing the physical aspects of their respective conditions.

Finally, with regards to creating meaning out of their lived experiences, participants composed a tapestry woven of shared threads. These threads carried the following themes: (a) reflections on philosophy of living; (b) turning points; (c) transformation; (d) redefining disability; and e) hopes and aspirations for the future for themselves and others.

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