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Educators with Tourette Syndrome Jennifer Kristen Stenger University of Missouri-St

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Educators with Tourette Syndrome Jennifer Kristen Stenger University of Missouri-St University of Missouri, St. Louis IRL @ UMSL Dissertations UMSL Graduate Works 12-1-2011 The Life That Chose Us: Educators with Tourette Syndrome Jennifer Kristen Stenger University of Missouri-St. Louis, [email protected] Follow this and additional works at: https://irl.umsl.edu/dissertation Part of the Education Commons Recommended Citation Stenger, Jennifer Kristen, "The Life That Chose Us: Educators with Tourette Syndrome" (2011). Dissertations. 403. https://irl.umsl.edu/dissertation/403 This Dissertation is brought to you for free and open access by the UMSL Graduate Works at IRL @ UMSL. It has been accepted for inclusion in Dissertations by an authorized administrator of IRL @ UMSL. For more information, please contact [email protected]. THE LIFE THAT CHOSE US: EDUCATORS WITH TOURETTE SYNDROME BY JENNIFER K. STENGER B.S., Southern Illinois University at Edwardsville, 2000 M.A., Southern Illinois University at Edwardsville, 2005 M.A., Lindenwood University, 2007 DISSERTATION Submitted in partial fulfillment of the requirements For the degree of Doctor of Philosophy in Educational Leadership and Policy Studies In the Graduate School of the University of Missouri-St. Louis, 2011 Advisory Committee Matthew Davis, Ph.D. (Chairperson) April Regester, Ph. D. Carl Hoagland, Ph.D. Charles Fazzaro, Ph.D. Abstract The purpose of this phenomenological study was to explore how having Tourette syndrome has shaped educators‘ relationships in their personal and professional experiences. I completed a series of three in-depth interviews with seven educators in K- 12 public schools who self-identify as an educator with Tourette syndrome. I began with a background of the participants‘ experiences related to having Tourette syndrome. From there, I discussed participants‘ experiences in regard to attaining and retaining employment. My guiding research questions were how having Tourette syndrome shapes relationships with administrators, colleagues, and students and their parents. Also, I asked how Tourette syndrome has shaped their own identity. Little current research examines the experiences of teachers with disabilities. As a seasoned teacher who has Tourette syndrome, I want to document the stories of others to develop maps for career success. ii TABLE OF CONTENTS CHAPTER 1: INTRODUCTION ......................................................................................................2 Personal Orientation...........................................................................................................................2 Situated in the Scholarship.................................................................................................................10 Research and Guiding Questions .......................................................................................................12 Scope of the Study .............................................................................................................................12 Definition of Terms............................................................................................................................13 Significance of the Study ...................................................................................................................14 CHAPTER 2: REVIEW OF THE LITERATURE ............................................................................15 Introduction ........................................................................................................................................15 Dismodernism ....................................................................................................................................15 Medical Model of Disability ..............................................................................................................19 History of Disability in Literature......................................................................................................20 Legal Cases Regarding Disability ......................................................................................................21 Developmental Disabilities ................................................................................................................23 Teachers with Disabilities ..................................................................................................................25 iii Attitudes Towards Educators with Disabilities ..................................................................................33 Disability as a Minority .....................................................................................................................36 Ableism and Disablism ......................................................................................................................39 Conclusion .........................................................................................................................................41 CHAPTER 3: METHODOLOGY .....................................................................................................43 Overview ............................................................................................................................................43 Design of Study..................................................................................................................................43 Role of Researcher .............................................................................................................................46 Limitations of Study ..........................................................................................................................46 Participants .........................................................................................................................................47 Data Collection ..................................................................................................................................47 Data Analysis .....................................................................................................................................49 CHAPTER 4: ANALYSIS AND FINDINGS: PARTICIPANTS‘ JOURNEYS .............................52 Purpose ...............................................................................................................................................52 Participants‘ Journeys ........................................................................................................................53 Conclusion .........................................................................................................................................107 iv CHAPTER 5: ANALYSIS AND FINDINGS: DISCLOSING TO ADMINISTRATORS AND COLLEAGUES ........................................................................................................................108 Purpose ...............................................................................................................................................108 Disclosing During the Interview Process ...........................................................................................109 Disclosing to Colleagues....................................................................................................................112 Disclosing to Administrators .............................................................................................................119 Suppressing Tics to Hide One‘s Disability ........................................................................................122 Comfort Level in Discussing Tourette Syndrome with Others at Work ...........................................124 How Disclosing Impacted Relationships with Colleagues ................................................................127 Positive Experiences Due to Disclosing at Work ..............................................................................129 Challenges Experienced Due to Disclosing at Work .........................................................................132 Discrimination Faced Due to Disclosing ...........................................................................................135 Socialization with Colleagues Outside of Work ................................................................................138 Conclusion .........................................................................................................................................140 CHAPTER 6: ANALYSIS AND FINDINGS: DISCLOSING TO STUDENTS .............................142 Purpose ...............................................................................................................................................142 Disclosing to Students........................................................................................................................143 v Students‘ Reactions ............................................................................................................................149 Impact Tourette Syndrome Has on Relationships with Students .......................................................153 Disclosing to Parents..........................................................................................................................155 Answering Questions About Tourette Syndrome ..............................................................................156 Strengths when Working with Students .............................................................................................159 Strengths when Working with
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