KIRBY, CAROL ANN, Ph.D. Meeting Disability with Resiliency, Hope and Agency: A Narrative Study of Caregivers of Children with Cognitive and Physical Disabilities. (2013) Directed by Dr. Leila Villaverde. 326 pp. Studies of caregivers of children with disabilities have historically assumed a deficit or disease model, while at the same time relying heavily on quantitative measures of stress and maladaptive behaviors. There is a dearth of qualitative and constructivist research into caregivers who are successfully thriving while caring for children with significant physical and cognitive disabilities. The purpose of this dissertation is to use parent/caregiver narratives to provide a fuller picture of how the experience of raising a child with disabilities might in fact be positive and transformative. Eight caregivers and caregiving couples who self-identified as resilient, hopeful, and as advocates for their children are interviewed in both school and home settings, with the goal of giving medical, educational, and therapeutic professionals a fuller, more intimate picture of these lived experiences. A post-critical, ethnographic framework—putting the interviewer and interviewee in conversation with one another while preserving the textual integrity of the participants’ stories—is central to the research methodology. Internal and external systems of caregiver support are examined, as well as the privileged concept of normalcy which acts to thwart full societal acceptance and inclusion. Implications for caregiver and community responses through advocacy, an ethic of care, and public policy initiatives are proffered. MEETING DISABILITY WITH RESILIENCY, HOPE AND AGENCY: A NARRATIVE STUDY OF CAREGIVERS OF CHILDREN WITH COGNITIVE AND PHYSICAL DISABILITIES by Carol Ann Kirby A Dissertation Submitted to the Faculty of The Graduate School at The University of North Carolina at Greensboro in Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy Greensboro 2013 Approved by Committee Chair © 2013 Carol Ann Kirby To my study participants—moms, dads and foster parents—who are caring for children with profound disabilities. Their steadfast love for their sons and daughters and fierce dedication to procuring for them the best quality of life possible is beyond telling. I am grateful that these busy people extended to me the gift of their time, so that I might better understand the caregiving experience. To be privy to their hopes, fears, and joys was a profoundly illuminating experience that I will carry with me always. To my three incredible children, Meg, Michael and Kevin, who are my greatest joys. My life is infinitely richer because they are in it. Watching them grow into caring and thoughtful adults has been, by far, my most meaningful accomplishment. With two awesome step-children, spouses and partners, and now sweet granddaughter Eilley in the mix, I have a delightful, fun-loving brood of eleven—heaven on earth! Like the parents in my study, my love for my children knows no bounds. To my bright and energetic mother, who has been my champion and cheerleader throughout my life, this latest chapter no exception; her generosity of spirit has never wavered. And to my birth and step-fathers, both now deceased—they would have been so proud of my efforts. I owe my parents a debt of gratitude for their abiding confidence in me, their own thirst for learning, and their unconditional love. Last, to my husband Jack, childhood sweetheart lost and reclaimed after a three decade hiatus. One of the first things he said to me when we reconnected was this: “Wait . you’re not Dr. Kirby? What’s up with that?” He set about making sure that I could indeed become Dr. Kirby, giving me space (literally and figuratively) to read and write, making it possible to survive my demanding day job as a public school principal and my “night and weekend job” immersed in this second labor of love. My dear Jack, sometimes there really are fairy-tale endings; you are mine. ii APPROVAL PAGE This dissertation written by Carol Ann Kirby has been approved by the following committee of the Faculty of The Graduate School at The University of North Carolina at Greensboro. Committee Chair Committee Members Date of Acceptance by Committee Date of Final Oral Examination iii ACKNOWLEDGMENTS I would first like to thank Dr. Leila Villaverde for chairing my committee, as well as for being my mentor and friend. Her academic rigor, personal warmth, and love for the art of teaching prompted me to seek her out for guidance with both my course of study and dissertation. With all that she has on her plate, I am grateful that she made a place for me, and has been a constant during this journey. Though I am almost old enough to be her mother, I confess that I aspire to be Dr. Villaverde “when I grow up!” Additionally, I want to extend hearty thanks to Dr. Rick Reitzug, Dr. Carl Lashley, and Dr. Teresa Little, my additional committee members. Their particular areas of expertise (qualitative methodologies, exceptional children, and public schooling issues) were invaluable as I navigated the process of comprehensive exams, dissertation proposal, and the study itself. I have appreciated their sincere encouragement and advice throughout the process. Last, I extend appreciation to the Educational Leadership and Cultural Foundations Department of UNC-Greensboro. The scholarship and passion of the instructors and students I’ve encountered in this course of study has stretched me in immeasurable ways. Two professors stand out in particular: Dr. Silvia Bettez and Dr. Glenn Hudak. The readings and discussions from their classes were always challenging and thought-provoking; their fidelity to inquiry learning and their zeal for social justice will continue to inspire me. iv PREFACE How many of us have looked away, in a store or on the street, from a mother pushing a young child with severe disabilities in her wheelchair? We are distressed and unhinged by the sight of tubes, wires and equipment. We avert our glance from a child who may not fit the visible norms to which we have become inured. Most of us would admit to experiencing these moments. We have held our breath, perhaps attempted a wan smile, and have gone on with our lives—untouched (“thank goodness,” we think secretly to ourselves) by what we perceive as grave hardship. The stories of how these mothers, fathers, and other caregivers navigate in an ableist world, how they advocate for their children, and how they are not merely coping, but in fact thriving, remain veiled from the mainstream. There is a need for researchers to explore these stories, privilege them, and make them explicit for the majority culture, a culture in which most children are healthy of mind and body. There are caregivers with the power to upend and disrupt our ill-conceived notions of pity and discomfort. I hope you will join me in listening to their stories. v TABLE OF CONTENTS Page LIST OF TABLES ..................................................................................................................... x CHAPTER I. INTRODUCTION .................................................................................................... 1 Overview ..................................................................................................... 1 Significance of the Study and Intended Audience ...................................... 3 Paradigm and Theoretical Framework ....................................................... 4 Research Questions .................................................................................. 11 Positionality as a Researcher .................................................................... 12 Chapter Summaries................................................................................... 15 A Few Words about Language .................................................................. 17 II. REVIEW OF THE RELATED RESEARCH LITERATURE ............................................ 19 Introduction .............................................................................................. 19 Deficit Model of Disability ......................................................................... 20 Quantitative Measures ............................................................................. 21 Discovering Outliers: The Shift towards “What Works” ........................... 22 Hope and Positive Strategies .................................................................... 23 Resiliency .................................................................................................. 24 Parent Voice/Agency ................................................................................ 26 Parents Tell their Stories ........................................................................... 28 Family Support .......................................................................................... 31 Conclusion ................................................................................................. 33 III. PLACING DISABILITY IN HISTORICAL CONTEXT .................................................. 36 Introduction .............................................................................................. 36 20th Century, Part 1: Asylums and Ugly Laws .......................................... 38 20th Century, Part 2: The Charity Model, and Glimmers of Activism ................................................................................................ 42 Emergence of the Social Model ...............................................................