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A Phenomenological Study of African American Women with Multiple Sclerosis

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A Phenomenological Study of African American Women with Multiple Sclerosis A Phenomenological Study of African American Women with Multiple Sclerosis: Disability Identity and the Superwoman Schema A dissertation presented to the faculty of The Patton College of Education of Ohio University In partial fulfillment of the requirements for the degree Doctor of Philosophy Jessica S. Henry April 2016 © 2016 Jessica S. Henry. All Rights Reserved. 2 This dissertation titled A Phenomenological Study of African American Women with Multiple Sclerosis: Disability Identity and the Superwoman Schema by JESSICA S. HENRY has been approved for the Department of Counseling and Higher Education and The Patton College of Education by Mona C. Robinson Associate Professor of Counseling and Higher Education Renée A. Middleton Dean, The Patton College of Education 3 Abstract HENRY, JESSICA S., Ph.D., April 2016, Counselor Education A Phenomenological Study of African American Women with Multiple Sclerosis: Disability Identity and the Superwoman Schema Director of Dissertation: Mona C. Robinson For African American (AA) women, the conversation regarding the acknowledgment of having a disability is considered a ‘taboo’ phenomenon and rarely associated with the holistic construct of one’s individual identity (e.g., Loveland, 1999). This concept of awareness and acceptance of corresponding impairments from a physical or mental illness is known as disability identity (DI) (Dunn & Burcaw, 2013). Similar to this conversation about the development of a disability identity is the phenomenon known as the superwoman schema (SWS) (Wallace, 1978; Woods-Giscombé, 2010). The principles outlined in theoretical perspective SWS provides rationale to support the hypothesis that historical roles - and innate obligations to care for the needs of others (Black & Peacock, 2011; Black, Murry, Cutrona, & Chen, 2009; Beauboeuf-Lafontant, 2008) may overshadow the process of returning to a state of holistic wellness after being diagnosed with an acquired disability. In general, research suggests that for people diagnosed with acquired disabilities it is a beneficial and critical part of rehabilitiation to confront physical, mental, emotional and even spiritual weaknesses in order to improve overall health (Gill, 1997). Together these two phenomenons suggest potential conflict to the commitment surrounding self- care and commitment to the community for AA women. In order to assist AA women 4 with MS in the process of disability identity development and adjustment to disability after being diagnosed this research investigation was designed to answer the following three questions: 1) Do African American women associate with the superwoman schema?, 2) What is the essence of the lived experience for African American women with MS?, and 3) What challenges do African American women with MS experience in regards to maintaining role obligations of SWS and the development of a disability identity? 5 Dedication “Normal is an illusion, what is normal to a spider is chaos to a fly”- Charles Addams. I dedicate this dissertation to all of the Black women in my life who have redefined ‘normal’ in order to triumph over chaos. 6 Acknowledgments The successful completion of this dissertation would not have been possible without my amazing dissertation chair/doctoral advisor, Dr. Mona C. Robinson. This journey could not have been possible without your support and encouragement. Thank you for believing in me. You are a “Superwoman”! I would also thank my amazing dissertation committee for their devotion to helping me construct a document that I could be proud of. Special thank you to Dr. Adah Ward Randolph, Dr. Nikol Bowen and Dr. Valerie Martin-Conley. An additional thank you to Dr. Renée A. Middleton for leading and paving a path before me as a future leader within the halls of the academy. I would like to acknowledge my family for being the supportive force behind my success; I consider it nothing less than a blessing to have parents (Dwight and Brenda Henry) who have prayed for my healing, health and prosperity since I was in the womb. Thank you and I LOVE YOU! To my sisters (biological, sisters in Christ, and members of Delta Sigma Theta, Sorority, Inc.) thank you all for making me laugh when I wanted to cry and smile when you noticed a frown on my face. Your support has been amazing, thank you! I love you all and promise to make you proud! Finally, and most importantly, I give all the praise, honor and glory to God who bared a cross for me so that I would have this opportunity. Being a woman with MS myself, they told me I would never be able to do this. I replied, “You don’t know the God that I serve. He has made me in his image and I am more than a conqueror”. Thank you! 7 Table of Contents Page Abstract ............................................................................................................................... 3 Dedication ........................................................................................................................... 5 Acknowledgments ............................................................................................................... 6 List of Tables .................................................................................................................... 13 List of Figures ................................................................................................................... 14 Chapter One: Introduction ................................................................................................ 15 Purpose .................................................................................................................. 20 Background of the Study ...................................................................................... 22 Significance ........................................................................................................... 31 Levels of Significance ........................................................................................... 32 Significance goal one. .................................................................................... 32 Significance goal two. ................................................................................... 33 Significance goal three. ................................................................................. 35 Significance goal four. ................................................................................... 36 Superwoman Schema (SWS) ................................................................................ 37 Superwoman schema. .................................................................................... 38 Research supporting the concepts of superwoman schema. .......................... 40 Disability Identity ................................................................................................. 42 Stages of Adjustment to Disability ....................................................................... 43 Adjustment to disability for congenital and acquired disabilities. ................ 44 8 Statement of the Problem ...................................................................................... 46 Overview of Methodology .................................................................................... 51 Research Questions ............................................................................................... 52 Sampling and participant recruitment. ........................................................... 52 Limitations ............................................................................................................ 53 Definitions of Terms ............................................................................................. 55 Chapter Two: Literature Review ...................................................................................... 58 Investigating the Experiences of African American Women with MS ................ 59 Multiple Sclerosis ................................................................................................. 60 Etiology. ......................................................................................................... 61 Prevalence. ..................................................................................................... 62 Incidence in African Americans (AA). .......................................................... 63 Treatment. ...................................................................................................... 65 Historical Context of Disability Identity ............................................................... 66 Culture of Disability ............................................................................................. 69 Self-concept. .................................................................................................. 72 Historical Context of Superwoman Schema (SWS) ............................................. 74 Black feminist literature. ............................................................................... 74 The myth of the superwoman schema. .......................................................... 76 Social comparison theory. ............................................................................. 81 Work-life balance. ......................................................................................... 83 Disability self-efficacy. .................................................................................. 84 9 Satisfaction with life (SWL). ........................................................................
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