Lived Experiences of Women with Hidden Disabilities

182 Pages·2015·0.85 MB·English

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

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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
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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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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

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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.

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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.

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LIST OF TABLES

1. Nine Interpretations of the Disability Paradigm (Pfeiffer, 2001)…………….20
2. Individual Participants………………………………………………………..46

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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
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