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Living a Life with a Physical Impairment in Taiwan

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Living a Life with a Physical Impairment in Taiwan LIVING A LIFE WITH A PHYSICAL IMPAIRMENT IN TAIWAN “IT IS MORE THAN JUST THE IMPAIRMENT” Hsiu-Ching Lin BS (Occupational Therapy), MS (Biomedical Engineering) 2012 School of Public Health and Social Work Faculty of Health, Queensland University of Technology Thesis submitted in partial requirement for the degree of Doctor of Philosophy Principal Supervisor: Dr Marie Knox Associate Supervisors: Dr Jennieffer Barr, Dr Theresa Chiu, Dr Kao-Chi Chung KEYWORDS physical impairment, lived experience, disability, disablism, community, inclusion, Taiwan, cultural understanding of disability, qualitative, collaborative partnership 1 ABSTRACT This thesis is concerned with understanding what it is like to live with a physical impairment in Taiwan. Constructionism was used as the epistemological stance to guide the study and Heideggerian interpretive phenomenology was used as the theoretical perspective. Information was gained through a series of in-depth interviews with seven Taiwanese adults with a physical impairment living in the community. They were recruited from Yunlin and Tainan Counties in Taiwan. Study participants were seen as research partners who had expertise in understanding disability, and the researcher was seen as a learner. Grounded theory principles were used to develop the theory “it is more than just the impairment” from the information provided by the participants. According to their descriptions of how they lived their lives, participants are grouped into three clusters. These are ‘fortress ladies’, ‘social networkers’ and ‘the mind man’. The grounded theory developed portrays their lives, providing a vivid picture of living a life with a physical impairment in Taiwan. The study’s findings contribute to three main areas. First, as an occupational therapist and with my growing understanding of disability learned from the study participants, I recognize the agency of people with an impairment and their expertise in disability. Thus, I argue the need for health professionals to build alliances with them, and suggest ways to achieve such a relationship. Second, I propose the developed conceptual framework is suitable for exploring lived experience in other research areas; I discuss the implications of the subtle interactions between impaired people’s body and mind; I also present three impressive lived experiences provided by study participants as exemplars of the findings, and these form the foundation for discussion. Finally, the development of “it is more than just the impairment” provides a basis from which to theorize disability in a more holistic way. 2 TABLE OF CONTENTS KEYWORDS 1 ABSTRACT 2 LISTS OF TABLES 9 LISTS OF FIGURES 10 STATEMENT OF ORIGINAL AUTHORSHIP 12 DEDICATED TO THE MEMORY OF DR KAO-CHI CHUNG 13 ACKNOWLEGEMENTS 14 INTRODUCTION 15 1. A brief outline of the study 15 2. The researcher’s motives and the study purpose 16 3. Background of study participants 18 4. Thesis structure 21 SECTION 1 WHAT DOES THE STUDY SEEK TO ACHIEVE? 22 CHAPTER 1 DISABILITY IN THE GLOBAL CONTEXT 24 1.1 Conceptualising disability in the Western context 24 1.1.1 Individual model of disability 24 1.1.2 Criticism of the individual model of disability 26 1.1.3 Social construction of disability 27 1.1.4 Criticism of the social model of disability 29 1.2 Common experiences of exclusion across cultures 32 1.2.1 Poverty 32 1.2.2 Prejudice and discrimination 34 1.3 Disability research for inclusion 38 CHAPTER 2 DISABILITY IN THE TAIWANESE CONTEXT 42 2.1 The cultural understanding of disability in Taiwan 43 2.1.1 Traditional Buddhism 43 2.1.1.1 Buddhist beliefs and their influence on the understanding of disability 43 2.1.1.2 Influence of Buddhism on the cultural understanding of disability in Taiwan 44 2.1.2 Confucianism as a philosophy in Chinese 45 2.1.2.1 Influence of Confucianism on Chinese family 45 3 2.1.2.2 Disability within Chinese family 46 2.1.3 Disability-related Chinese language characters 48 2.1.3.1 Causation 48 2.1.3.2 Imbalance 48 2.1.3.3 Dehumanizing characters 49 2.2 The development of the Disability Rights Movement in Taiwan 51 2.3 Disability legislation in Taiwan 55 2.3.1 Tracing the development of disability legislation in Taiwan 55 2.3.2 Advantages and disadvantages of disability legislation 58 2.4 The need to investigate the lived experience of living a life with a physical impairment in Taiwan 61 2.4.1 Using the social model of disability as a ‘hammer’ for understanding the lived experience of living a life with a physical impairment in Taiwan 65 SECTION 2 HOW WAS THE STUDY CONDUCTED? 67 CHAPTER 3 RESEARCH CONCEPTUAL FRAMEWORK AND DESIGN 68 3.1 Inductive research strategy 68 3.2 Constructionism as epistemological stance 70 3.3 Interpretive paradigm as theoretical perspective 72 3.3.1 Heideggerian hermeneutic-phenomenology 72 3.3.1.1 The Heideggerian phenomenological view of the person 73 3.3.1.2 Hermeneutic phenomenology 77 3.3.1.3 The involvement of the researcher and participants in interpretation 82 3.4 Constructivist grounded theory as the methodology 83 CHAPTER 4 METHODS 85 4.1 Pilot study 85 4.1.1 Recruitment of pilot study participants and in-depth interviewing 85 4.1.2 Researcher’s reflections and learning from pilot study 86 4.1.2.1 Timing issues 86 4.1.2.2 Interview procedures 87 4.1.2.3 Interpersonal processes 87 4.1.2.4 New ethics consideration 88 4.2 The study 91 4.2.1 Recruitment 91 4.2.1.1 Purposive sampling used to recruit study participants 91 4 4.2.1.2 Researcher’s dilemma on issuing invitations 92 4.2.2 In-depth interview as means of data collection 93 4.2.2.1 In-depth interview 93 4.2.2.2 Collaborative partnership between me and study participants 95 4.2.2.3 Reflexivity 98 4.2.2.4 Member checking 99 4.3 Analysis 100 4.3.1 Transcribing and translation 100 4.3.2 Analysing by using the grounded theory approach 101 4.4 Research rigor 107 SECTION 3 WHAT DID THE STUDY FIND? 109 CHAPTER 5 THE DEVELOPED THEORY: “IT IS MORE THAN JUST THE IMPAIRMENT” 110 5.1 Participants’ lives in Taiwan 111 5.1.1 Perceptions of living a life with a physical impairment 111 5.1.1.1 Living with an impaired body 112 5.1.1.2 Dealing with the mind 113 5.1.1.3 Dealing with the need for support 118 5.1.2 Perceptions of the context in which participants were living their lives 123 5.1.2.1 Social network 123 5.1.2.2 Cultural attitudes towards their impairment 133 5.1.2.3 Disability legislation 137 5.2 Participants’ management of their lives in Taiwan 144 5.2.1 Building the fortress 144 5.2.1.1 Protecting the impaired body 145 5.2.1.2 Protecting the fragile mind 146 5.2.2 Fostering support 149 5.2.2.1 Seeking out support 150 5.2.2.2 Maintaining harmony in relationships 151 5.2.2.3 Ensuring sustainability of support 153 5.2.3 Fostering the mind 155 5.2.3.1 Self-reflection on the meaning of having a handicap 155 5.2.3.2 Breaking through the handicap 156 5.3 Outcome of participants’ management of their lives in Taiwan 158 5.3.1 Continuing to build the fortress 158 5.3.1.1 Self-imposed social isolation 159 5 5.3.1.2 Hurt resulting from letting down the drawbridge to the fortress 159 5.3.2 Continuing to foster support 160 5.3.2.1 A contented social networker 160 5.3.2.2 An active social networker 160 5.3.2.3 An anxious social networker 160 5.3.2.4 A hapless social networker 161 5.3.3 Continuing to foster the mind 161 5.3.3.1 Superior mind 161 CHAPTER 6 FORTRESS LADIES 164 6.1 Pearl in an orphan fortress 165 6.1.1 Pearl’s life in Taiwan 165 6.1.2 Pearl’s management of her life in Taiwan 172 6.1.3 Outcome of Pearl’s management of her life in Taiwan 176 6.2 Joyce in a peach fortress 179 6.2.1 Joyce’s life in Taiwan 179 6.2.2 Joyce’s management of her life in Taiwan 188 6.2.3 Outcome of Joyce’s management of her life in Taiwan 193 6.3 Discussion of fortress ladies 196 CHAPTER 7 SOCIAL NETWORKERS 200 7.1 Judy as a content social networker 201 7.1.1 Judy’s life in Taiwan 201 7.1.2 Judy’s management of her life in Taiwan 205 7.1.3 Outcome of Judy’s management of her life in Taiwan 208 7.2 Yugo as an active social networker 210 7.2.1 Yugo’s life in Taiwan 210 7.2.2 Yugo’s management of his life in Taiwan 217 7.2.3 Outcome of Yugo’s management of his life in Taiwan 221 7.3 Mary as an anxious social networker 223 7.3.1 Mary’s life in Taiwan 223 7.3.2 Mary’s management of her life in Taiwan 230 7.3.3 Outcome of Mary’s management of her life in Taiwan 234 7.4 Hilda as a hapless social networker 236 7.4.1 Hilda’s life in Taiwan 236 7.4.2 Hilda’s management of her life in Taiwan 241 7.4.3 Outcome of Hilda’s management of her life in Taiwan 243 6 7.5 Discussion of social networkers 245 CHAPTER 8 THE MIND MAN 248 8.1 Venice’s life in Taiwan 248 8.2 Venice’s management of his life in Taiwan 256 8.2.1 Fostering his mind 256 8.2.2 Making sure he would be able to support himself 257 8.3 Outcome of Venice’s management of his life in Taiwan 260 SECTION 4 WHAT ARE THE IMPLICATIONS OF FINDINGS? 262 CHAPTER 9 THE RESEARCHER’S REFLECTION ON UNDERSTANDING DISABILITY 263 9.1 Who are the experts in disability? 263 9.2 Who should take control of the lives of people with an impairment? 267 9.3 How to build better relationships with people with an impairment? 269 CHAPTER 10 LIVED EXPERIENCES 273 10.1 Application of the conceptual framework for studying lived experiences 273 10.2 Lived experiences of struggling to have their voices heard 276 10.2.1 The state of mind reflects the degree of inclusion 277 10.2.2 Wanting to be included in the community 279 10.2.2.1 Social network 279 10.2.2.2 Disability legislation 286 10.2.2.3 Disablism in Taiwanese culture 291
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