University of Vermont ScholarWorks @ UVM Graduate College Dissertations and Theses Dissertations and Theses 2016 Walk A Mile In My Shoes: The oS cial Construction Of Mental Illness Among State Administrators And Consumer-Advocates Paul Arthur Dragon University of Vermont Follow this and additional works at: https://scholarworks.uvm.edu/graddis Part of the Philosophy Commons, Psychiatric and Mental Health Commons, and the Social Psychology Commons Recommended Citation Dragon, Paul Arthur, "Walk A Mile In My Shoes: The ocS ial Construction Of Mental Illness Among State Administrators And Consumer-Advocates" (2016). Graduate College Dissertations and Theses. 545. https://scholarworks.uvm.edu/graddis/545 This Dissertation is brought to you for free and open access by the Dissertations and Theses at ScholarWorks @ UVM. It has been accepted for inclusion in Graduate College Dissertations and Theses by an authorized administrator of ScholarWorks @ UVM. For more information, please contact [email protected]. WALK A MILE IN MY SHOES: THE SOCIAL CONSTRUCTION OF MENTAL ILLNESS AMONG STATE ADMINISTRATORS AND CONSUMER-ADVOCATES A Dissertation Presented by Paul Dragon to The Faculty of the Graduate College of The University of Vermont In Partial Fulfillment of the Requirements For the Degree of Doctor of Education Specializing in Educational Leadership and Policy Studies May, 2016 Defense Date: December 9, 2015 Dissertation Examination Committee: Judith A. Aiken, Ed.D., Advisor George Leibowitz, Ph.D., Chairperson Jill M. Tarule, Ed.D. Bernice Garnett, Ph.D. Cynthia J. Forehand, Ph.D., Dean of the Graduate College ABSTRACT From 19 th century insane asylums to state sponsored eugenic programs in the 20 th century, the state has been an incongruous leader and provider of mental health policy and practice. Current practices that include such treatments as confinement, restraints, forced medication and electro-convulsive therapy continue to raise issues of social justice and humane treatment. Since the 1970s a diverse group of consumers of mental health services from political and radical emancipatory movements to consumer and family initiatives have emerged to question, inform and influence federal and state policies and services. Today state administrators and consumer-advocates meet in formal settings in which they exchange ideas as they work to affect and develop mental health policy and practice. However, such exchanges have raised new questions regarding the relationship between these two groups and their ability, in light of past practices to effectively work together to develop mental health policy and practice. The purpose of this study is to compare how state administrators and consumer-advocates perceive mental illness and how these perceptions impact policy and practice. Through a qualitative research study, the researcher compared and contrasted the perceptions of five consumer-advocates and five state administrators who are involved in major mental health policy in a rural state in order to consider how their perceptions of mental health affect policy and treatment. This study shows an emerging relationship between state administrators and consumer- advocates but a relationship that lacks communication and trust as their discourse attempts to span the gap between their two symbolic universes. The focus of consumer- advocates on the importance of their role in battling pervasive stigma and the need for people with lived experience to be central in the mental health system can be seen as an effort to overcome a historical pattern of coercion and abuse of mental health patients by the state. The focus of state administrators to remain relevant in a mental health system in which consumer-advocates challenge the status quo can be seen as their effort to retain legitimacy as well as their historic control over the mental health system. State administrators and consumer-advocates know that they exist in a new, shared world of mental health care and both groups agreed that the relationship between them needs to improve. DEDICATION This paper is dedicated to my late mother Ruth Stevenson-Dragon. ii ACKNOWLEDGEMENTS I want to express my deepest appreciation to Dr. Judith Aiken and the faculty at the University of Vermont’s School of Education, my sisters Cheryl and Donna who have always been there for me and especially to my wife Julie and daughters Eleni, Anastasia and Katya who help me to be a better person. iii TABLE OF CONTENTS DEDICATION ........................................................................................................ ii ACKNOWLEDGEMENTS ................................................................................... iii LIST OF TABLES ................................................................................................ vii LIST OF FIGURES ............................................................................................. viii CHAPTER 1: INTRODUCTION ...........................................................................1 Background and Context....................................................................................2 Problem Statement .............................................................................................7 Research Purpose and Questions .......................................................................8 Research Methodology ......................................................................................8 Researcher’s Assumptions ...............................................................................10 The Researcher: My Place in the Study through Personal Reflection .............12 Definitions of Key Terminology Used in this Study .......................................16 CHAPTER 2: LITERATURE REVIEW ...............................................................18 Defining Mental Illness....................................................................................19 The Prevalence of Mental Illness .....................................................................25 Understanding Mental Health as a Social Condition ......................................33 Role Theory ...............................................................................................38 The Role of the State and the Medical model in the Policy and Treatment of Mental Illness ......................................................................44 Consumer Involvement and State Administration of Mental Health Policy and Services ....................................................................................52 Finding common ground ............................................................................61 Summary of the Literature Review ..................................................................61 Conceptual Framework for this Study ............................................................64 CHAPTER 3: RESEARCH METHODOLOGY AND ANALYSIS .....................70 Problem Statement ...........................................................................................70 Research Purpose and Questions .....................................................................70 Research Method ............................................................................................71 Potential Significance/Contribution to the Research .......................................72 Applying a Phenomenological Research Approach .......................................73 Rationale for a Qualitative Study ....................................................................74 Research Plan ...................................................................................................76 iv Site Selection .............................................................................................76 Participant Selection Process .....................................................................78 Sample........................................................................................................79 Data Collection ..........................................................................................80 Data Analysis .............................................................................................80 Limitations .................................................................................................81 Quality Assurance ......................................................................................82 CHAPTER 4: THE FINDINGS .............................................................................85 Introduction ......................................................................................................85 Findings for State Administrators and Consumer-Advocates .........................89 Finding 1 ....................................................................................................89 Finding 2 ....................................................................................................92 Finding 3 ..................................................................................................105 Finding 4 ..................................................................................................111 Finding 5 ..................................................................................................115 Finding 6 ..................................................................................................142 Findings from the Document Review of State Administrators and Consumer-Advocates ........................................................................149