Te University of San Francisco USF Scholarship: a digital repository @ Gleeson Library | Geschke Center Doctoral Dissertations Teses, Dissertations, Capstones and Projects 2013 Lived Experiences of Women with Hidden Disabilities: A Phenomenologically Based Study Michelle Jean Yee University of San Francisco, The University of San Francisco LIVED EXPERIENCES OF WOMEN WITH HIDDEN DISABILITIES: A PHENOMENOLOGICALLY BASED STUDY A Dissertation Presented to The Faculty of the School of Education International and Multicultural Education Department In Partial Fulfillment of the Requirements for the Degree Doctor of Education by Michelle J. Yee © San Francisco December 2013 Copyright © 2014 Michelle J. Yee ii THE UNIVERSITY OF SAN FRANCISCO Dissertation Abstract Lived Experiences of Women with Hidden Disabilities: A Phenomenologically Based Study 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 iii 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. iv This dissertation, written under the direction of the candidate’s dissertation committee and approved by the members of the committee, has been presented to and accepted by the Faculty of the School of Education in partial fulfillment of the requirements for the degree of Doctor of Education. The content and research methodologies presented in this work represent the work of the candidate alone. Michelle J. Yee December 12, 2013 Candidate Dissertation Committee Shabnam Koirala-Azad, Ph.D. December 12, 2013 Chairperson Susan Katz, Ph.D. December 12, 2013 Xornam Apedoe, Ph.D. December 12, 2013 v Dedication “We shall not cease from exploration And the end of all our exploring Will be to arrive where we started And know the place for the first time” T.S Eliot (Four Quarters) This work is dedicated to the memory of my late father, Don M. Yee, M.D., Ph.D., who was one of the first to teach me to listen to the voices of those who are often silenced. vi Acknowledgements In the words of Goethe, “In reality this kind of work is never finished. One has to declare it finished when, in accord with time and circumstance, one has done the utmost.” Many too innumerable to name here have made the ontogenesis and completion of this project possible and have encouraged me, even when my stamina was flagging, to do my “utmost.” I am immensely grateful for the sage guidance, wisdom, counsel, and time of this very special academic triumvirate: my dedicated doctoral advisor and dissertation chair, Dr. Shabnam-Koirala Azad, and my supportive dissertation committee members, Dr. Xornam Apedoe and Dr. Susan Katz. They each helped to transform a potentially arduous, unfathomable journey into a unique exploration characterized by discovery and epiphany. I extend deep gratitude to these gracious individuals and organizations: Dr. Gini Shimabukuro, Dr. Benjamin Baab, Connor Cook, the faculty of the Department of International and Multicultural Education in the School of Education at the University of San Francisco, Loral Wright, Dr. Laleh Shahideh, Dr. Ravi Rajan, Dr. Mark Weiner, Dr. Jennifer Lerner, Dr. Meredith Katz, C. Casey, K. Oberlander, Regina Covington, Judith Heumann, Dr. Charlie Clements, Dr. Christopher Moore, Dr. Margaret Rogers, Dr. Katherine Profeta, N. Lublin, C. Schroeder, Dr. Gregory Kopra, Dr. Page Hersey, Dr. Andrea McEvoy Spero, Kimetha Vanderveen, the indomitable team at Partners in Health, and the Disability Rights team at Human Rights Watch. My family and friends deserve special recognition in light of their steadfast, stoic encouragement and support throughout all phases of the doctoral marathon. In particular, my unfailingly patient and unflappable husband, RH, and my inimitable mother, JY, were each bottomless wells of love, patience, understanding, good humor, and necessary pragmatism. Lastly, but by no means least, I want to express my profound appreciation to the remarkable women who participated in this study, as well as their families. Without the generous sharing of their invaluable time, energy, and personal stories, this work would not have been possible. Thank you. vii LIST OF TABLES 1. Nine Interpretations of the Disability Paradigm (Pfeiffer, 2001)…………….20 2. Individual Participants………………………………………………………..46 viii TABLE OF CONTENTS ABSTRACT…………………………………………………………………………iii SIGNATURE PAGE……………………………………………………………........v DEDICATION PAGE……………………………………………………………….vi ACKNOWLEDGEMENTS………………………………………………………...vii LIST OF TABLES…………………………………………………………………viii CHAPTER I: THE RESEARCH PROBLEM…………………………………….. .1 Statement of the Problem……………………………………………………1 Women with Disabilities…………………………………………….2 Invisible Disabilities……………………………………………….. .4 Background and Need for the Study………………………………………...7 The Social Model of Disability……………………………………...7 Purpose of the Study……………………………………………………….11 Research Questions………………………………………………………...11 Theoretical Framework…………………………………………………….12 Critical Disability Theory………………………………………… 12 Material Feminism…………………………………………………13 Phenomenology……………………………………………………15 Significance………………………………………………………………..16 Definition of Terms………………………………………………………..17 CHAPTER II: THE REVIEW OF THE LITERATURE…………………………19 Overview………………………………………………………………….19 The Disability Paradigm…………………………………………………..19 Critiques of the Social Model of Disability……………………….23 Introduction………………………………………………..23 Primary Lacuna in the Social Model of Disability………..23 Alternatives to the Social Model of Disability……………………25 Experiences of Women with Physical Disabilities………………………..28 Embodiment……………………………………...………………..28 Sites of Resistance and Acquiescence…………………………….29 Challenges for Women with Hidden (Non-Visible) Disabilities …………31 Passing…………………………………………………………….33 Legitimacy………………………………………………………...34 Discussion and Conclusion……………………………………………......40 CHAPTER III: METHODOLOGY………………………………………………..42 Restatement of the Purpose of the Study…………………………………..42 ix