BEYOND the FORTRESS: Dis/ability, Community and Care CUSHLA BROOKE DARES (B.A. HONS) SUBMITTED IN FULFILMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS Te Whare Wānanga O Waitaha University of Canterbury 2018 Table of Contents Abstract .................................................................................................................................................................................. 1 Acknowledgements ........................................................................................................................................................... 2 Prologue ................................................................................................................................................................................. 4 Introduction........................................................................................................................................................................ 12 Research questions .................................................................................................................................................... 13 The role of ethnography ........................................................................................................................................... 14 An autoethnographical endeavour ...................................................................................................................... 16 Entering the research field ...................................................................................................................................... 19 Disciplinary orientations ......................................................................................................................................... 21 For Geographies of Care ........................................................................................................................................... 22 Chapter outline ............................................................................................................................................................ 24 Chapter One: Dis/ability: definitions, historical constructions, and origin points ............................... 27 Defining ‘disability’ ..................................................................................................................................................... 27 Defining the ‘Disability Sector’ .............................................................................................................................. 31 Constructions of normalcy ...................................................................................................................................... 31 Classifying personhood ............................................................................................................................................ 33 Interlude: The public birth of the Disability Rights Movement? .................................................................. 35 Recalling an historic event ...................................................................................................................................... 36 The context .................................................................................................................................................................... 36 Chapter Two: Dis/ability and social change ......................................................................................................... 39 Turning to New Zealand ........................................................................................................................................... 40 Triumphs and challenges: dis/ability in the decades following .............................................................. 44 The workings of social change ............................................................................................................................... 46 A movement fragmented: ........................................................................................................................................ 52 Interlude: Capturing lived experience ..................................................................................................................... 56 Chapter Three: Stories of disconnect ....................................................................................................................... 60 Mapping dis/ability and separation: ................................................................................................................... 62 Constructing boundaries: separation in action .............................................................................................. 63 Understanding community ..................................................................................................................................... 66 The creation of claimed community.................................................................................................................... 67 Historical patterns ...................................................................................................................................................... 69 The protectionist ghetto ........................................................................................................................................... 70 Shifting the focus ......................................................................................................................................................... 72 Interlude: Singing the praises of leadership development? ........................................................................... 75 Chapter Four: Turning to leadership ....................................................................................................................... 78 Leadership studies ..................................................................................................................................................... 78 Cultural framings of leadership ............................................................................................................................ 80 What constitutes a leader? ...................................................................................................................................... 82 Turning to leadership development .................................................................................................................... 83 Tales of leadership development ......................................................................................................................... 85 — ‘Choosing’ leaders— ............................................................................................................................................ 85 —Financing leadership endeavours— .............................................................................................................. 86 —Financial expectations— ..................................................................................................................................... 88 —Behind the veneer: When image matters— ................................................................................................ 90 —The clashing of paradigms— ............................................................................................................................. 91 —“At the edge of vulnerability”— ....................................................................................................................... 96 —When chaos ensues—........................................................................................................................................... 99 —Impacts, checks and balances— .................................................................................................................... 106 Leadership reconsidered ...................................................................................................................................... 108 Interlude: Beloved community ................................................................................................................................ 112 One year later: ........................................................................................................................................................... 113 Chapter Five: Constructing new worlds .............................................................................................................. 114 Communitas and change ....................................................................................................................................... 116 Questions of care ...................................................................................................................................................... 118 Turning to culture .................................................................................................................................................... 119 Building relationships and strengthening connection ............................................................................. 120 The role of Cultural Mentoring ........................................................................................................................... 122 Countering the combative terrain? ................................................................................................................... 123 Discovering what