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
CHAPTER 11 THE CONTRIBUTION OF “IT IS MORE THAN JUST THE IMPAIRMENT” IN DEVELOPING A DISABILITY THEORY 294
11.1 Dynamic interactions of the person and the context in which she or he lives 294 11.1.1 My criticism of two models 295 11.2 A cultural dimension of disability theory 297 11.2.1 Understanding disability starting from locating an impairment in the context 299
CONCLUSION 303
7 REFERENCES 304
Appendix 1 Approved ethical letter 317
Appendix 2 Letter to the professional contacts 318
Appendix 3 Invitation to potential participants (pilot study) 320
Appendix 4 Information sheet for potential participants (pilot study) 321
Appendix 5 Acceptance form for use by potential participants (pilot study) 323
Appendix 6 Consent form (pilot study participants) 324
Appendix 7 Interview guide for pilot study 326
Appendix 8 The pilot study feedback form 328
Appendix 9 Agreement to use information from the pilot study in the main study 329
Appendix 10 Request for local organisational assistance in the invitation procedure of main study 331
Appendix 11 Approval form for use by the assisting disabled welfare organizations 332
Appendix 12 Invitation to potential participants 333
Appendix 13 Information sheet for potential participants 334
Appendix 14 Acceptance form for use by potential participants 336
Appendix 15 Consent form 337
Appendix 16 The interview guide: amendment in light of pilot study findings 339
Appendix 17 Interview transcribing assistant confidentiality of information agreement 341
Appendix 18 Table 3-6: The developed theory: it is more than just the impairment and its associated themes and categories 342
8 LISTS OF TABLES
Table 1: Summary of the important development of disability legislation in Taiwan from 1980 to 2007 56
Table 2: Summary of research conceptual framework for the study 68
Table 3: Depiction of the associated categories and categorical properties of participants’ perceptions of themselves as living a life with a physical impairment 342
Table 4: Depiction of the categories and categorical properties of participants’ perceptions of the context in which they were living their lives 346
Table 5: Depiction of the categories and categorical properties of participants’ management of their lives in Taiwan 357
Table 6: Depiction of the categories and categorical properties of the outcome of participants’ management of their lives in Taiwan 365
9 LISTS OF FIGURES
Figure 1 The disability certificate of Taiwan R. O. C. 18
Figure 5.1 Participants’ perceptions of themselves on living a life with a physical impairment 122
Figure 5.2 Participants’ lives in Taiwan and associated themes 143
Figure 5.3 Participants’ management of their lives in Taiwan and associated categories 157
Figure 5.4 The outcome of management of participants’ lives in Taiwan and the iterative process of ‘it is more than just the impairment’ 163
Figure 6.1.1 Pearl’s life in Taiwan: “I have lived in tears all my life” 171
Figure 6.1.2 Pearl’s life in Taiwan and her management of it 175
Figure 6.1.3 Theoretical depiction of the iterative process for Pearl to live her life with a physical impairment in Taiwan 178
Figure 6.2.1 Joyce’s life in Taiwan: “I would draw a boundary, not allowing other people to
get too close because I am afraid of getting hurt” 187
Figure 6.2.2 Joyce’s life in Taiwan and her management of it 192
Figure 6.2.3 Theoretical depiction of the iterative process for Joyce to live her life with a physical impairment in Taiwan 195
Figure 7.1.1 Judy’s life in Taiwan: “I suppose that I get along with people ok!” 204
Figure 7.1.2 Judy’s life in Taiwan and her management of it 207
Figure 7.1.3 Theoretical depiction of the iterative process for Judy to live her life with a physical impairment in Taiwan 209
Figure 7.2.1 Yugo’s life in Taiwan: “Managing good relations with others is my way of existence!” 216
Figure 7.2.2 Yugo’s life in Taiwan and his management of it 220
10 Figure 7.2.3 Theoretical depiction of the iterative process for Yugo to live his life with a physical impairment in Taiwan 222
Figure 7.3.1 Mary’s life in Taiwan: “Now it’s tolerable!... …but how about the future?” 229
Figure 7.3.2 Mary’s life in Taiwan and her management of it 233
Figure 7.3.3 Theoretical depiction of the iterative process of Mary’s life in Taiwan as an anxious social networker 235
Figure 7.4.1 Hilda’s life in Taiwan: “To live every day is waiting for death” 240
Figure 7.4.2 Hilda’s life in Taiwan and her management of it 242
Figure 7.4.3 Theoretical depiction of the iterative process for Hilda to live her life in Taiwan as a hapless social networker 244
Figure 8.1 Venice’s life in Taiwan: “I don’t care that my feet or my hands are not good because these are not important!” 255
Figure 8.2 Venice’s life in Taiwan and his management of it 259
Figure 8.3 Theoretical depiction of the iterative process for Venice to live her life in Taiwan as a hapless social networker 261
11 STATEMENT OF ORIGINAL AUTHORSHIP
The work contained in this thesis has not been previously submitted to meet requirements for an award at this or any other higher education institution. To the best of my knowledge and belief, the thesis contains no material previously published or written by another person except where due reference is made.
Signature:
Date:
12 Dedicated to the memory of Dr Kao-Chi Chung (12.1950~07.2012)
On the same day, I went to Dr Chung’s funeral I received the examiners’ reports. I did not get the chance to tell Dr Chung about the good news that my PhD thesis was nominated for the University Outstanding Thesis Award. I had many regrets about Dr Chung. During his sickness, most of the time I was overseas. I remembered the last time I tried to contact him, he was going through medical treatment. Therefore, I did not get the chance to see him before he passed away.
Dr Chung was a successful scholar because he did not only devote himself to academic research but also was heavily involved in disability services. He had worked in many disability services mainly in rural areas for people with serious impairments. Also, he made a significant contribution to the development of assistive devices in Taiwan. Dr Chung was a role model for students with his combining service provision and research in disability field in Taiwan. I think this is because he always kept the passion for providing better quality of life for people with disabilities. Thus, he emphasized both research and service for this group of people. What he taught is not only knowledge but also the love for his country. I believe many students like me will always remember him and be most thankful for his contribution to society.
13 ACKNOWLEGEMENTS
I recall my PhD journey with amazement. Firstly, my understanding of disability was challenged by my supervisor, Marie Knox the first time I talked with her. Then, there were many books I needed to read, which provided me with new insights into disability and helped me to understand what qualitative study was. Also, through this study, I had the opportunity to get to know the study participants who later became my friends. In the meantime, my life underwent several significant changes. I got married, and gave birth to twins. Therefore, I needed to travel between Taiwan and Australia, and tried to achieve a balance between my study and family life. In overcoming the difficulties of completing the study, there are many people I need to thank. I was so lucky that I had two teams supporting me. They were my family and study colleagues. Thanks to my parents, my husband, my parents-in-law, and my sister for taking care of the twins, and encouraging me to finish the study. Also, thanks to Marie, Jennie and Waveney who helped me to maintain the determination to finish the study.
Completing the PhD study was not a simple thing for me. I do hope my thesis will prove interesting to readers.
14 INTRODUCTION
1. A brief outline of the study
This research aimed to explore the experience of disability of seven Taiwanese adults with a physical impairment. Their experiences and perceptions of living a life with a physical impairment were gained through a series of in-depth interviews.
The developed theory of “it is more than just the impairment” was grounded in the information they provided. The theory tells the dynamic interactions between the participants and the context in which they were living; how they managed their lives within the context; and what the outcomes were. In addition, the relationships of themes mentioned above are revealed in the theory. The theory is also applied to portray every participant’s life providing readers with a vivid view of what living a life with a physical impairment in Taiwan might be.
Thus, the implications which emerged from the study’s findings include my personal reflection as an occupational therapist on understanding disability, the importance of lived experience contributing to an understanding of disability, and a suggested way for theorizing about disability.
15 2. The researcher’s motives and the study purpose
First, I wish to introduce my study background and work experiences which inform the changes in my understanding of disability following the conduct of the study. As an undergraduate, I studied occupational therapy. After that, my Masters study was in biomedical engineering and I started to locate my future career in the area of assistive technology because it linked rehabilitation and biomedical engineering together. Hence, my Masters thesis was set in this area, and was concerned with the development of an air bag monitoring system for use by people with scoliosis. After finishing my Masters degree, I worked for one year in the ‘Assistive Device Research and Development Center for the Disabled’ in Tainan Taiwan. Most of my work involved making customized cushions for people with an impairment, and doing an In-house Evaluation Project for low or medium income persons with an impairment. During that year I had a significant amount of contact with people with an impairment in the community, but not in hospital or clinical settings. As a result of this experience I discovered an enthusiasm for working in the community with people with an impairment and wanted to know more about their lives. Then, I had the chance to study disability in Social Work and Human Services, and I met my supervisor, Dr Marie Knox.
I remember the first time I met her; she kept asking me about the usefulness of a customized cushion for people with an impairment. I tried hard to explain how it could reduce the pressure on the buttocks for those with mobility difficulties. As an occupational therapist in Taiwan, the philosophy that underpinned my practice has been the medical model. The medical model has been the traditional philosophical approach to “train” people with an impairment (referred to as “patients”) to be as independent as possible to maximize or maintain their function. Medical personnel like doctors, occupational therapists or physical therapists, are thought of as experts in medical treatment or rehabilitation, and their purpose is to provide effective training programs for improving quality of life for individuals with an impairment.
However, I started to change my views on disability when Marie gave me some disability books introducing the concept of the social model of disability and the disability movement in the United Kingdom (UK). After reading these books, I started to realise that there was another understanding of disability and it challenged much of my prior understanding of disability.
16 I came to realise disability is not a single issue which can be viewed or explained purely by the medical model of disability (Miles, 2002). From my readings of the social model of disability (Barnes, 1998; Barnes, Mercer, & Shakespeare, 1999; Corker & Shakespeare, 2002; French, 1993; Morris, 1993a, 1993b; Oliver, 1996a, 1996b, 1996c; Swain, French, & Cameron, 2003; Thomas, 1999; Thomas & Corker, 2002), I have come to understand that disability can be understood in a different way. In fact, there are other socio-cultural factors affecting the understanding of disability. The cultural understanding of disability within a society continues to affect the social values or attitudes towards people with an impairment (McCollum & Chen, 2003; Miles, 1995, 2002; Oliver & Sapey, 2006), as is the situation in Taiwan. Moreover, Western concepts such as equal opportunity and full participation have been influential in recent changes to Taiwanese disability legislation (Ministry of the Interior, 2009c; Shiau, 2002). Thus, these two different influences might well result in a far more complex picture of disability than that encompassed by the medical model. Therefore, disability can be conceptualized as a social issue with different cultural understandings among various cultures, and not just a medical issue.
In line with my motives and the gap in current Taiwanese literature on the deeper understanding of disability outlined above, a significant goal of the study was to explore the issue of what living a life with a physical impairment means, to gain a wider understanding of disability in Taiwan. Thus, the lived experience of living a life with a physical impairment was sought from a group of Taiwanese adults who are labelled as people with a physical impairment, in order to fill the gap in understanding disability in this country. Also, and importantly, participants are seen as experts in their knowledge of disability, and their views and experiences are therefore highly valued and respected.
17 3. Background of study participants
In this study, individuals with a physical impairment refer to those who receive a disability certificate (refer to disability manual translated in Taiwan, see Figure 1 below) certified by the central competent authorities in charge of health in Taiwan. These individuals are labelled as having restricted functions affecting their participation in society and engaging in productive activities because of their physical characteristics or limitations (Ministry of the Interior, 2004)1.
The recruitment criteria of participants in this study, in line with these definitions, are adults labelled as a person with a physical impairment in Taiwan, i.e. having a disability certificate due to one’s physical condition, and living in the community-based settings in Tainan or Yunlin County.
Figure 1 The disability certificate of Taiwan R. O. C.
There were seven participants in the study, and their background information is described below so that readers have the opportunity to know them from the beginning of the thesis. Their lived experiences depicted in the developed theory, will be presented in chapters 6, 7 and 8.
Pearl has poliomyelitis and has been an electric wheelchair user for most of her life.
1 The recruitment of potential participants was before the latest and most significant amendment of disability legislation introduced on 11th July, 2007. Hence, the recruitment criterion of the definition of disability certificate was based on disability legislation of 2004.
18 She was in her mid-thirties at the time of interview. She reported that she often felt unwell because she has a severe impairment.
Talking about her relationships with people around her, Pearl feels hurt. For example, Pearl had lived in an institution for children with an impairment when she was a child. She has terrible memories of her time in the institution. In addition, she did not get along well with her mother. She lives alone in a rented flat and has had several working experiences in different places. She also found she did not get along well with her colleagues. Pearl feels that as a person with an impairment, she has endured too many hardships, and she feels lonely and hurt.
Joyce has an impairment in her left leg, sustained as a result of an unknown incident when she was a primary school student. She was in her mid-twenties at the time of interview. She uses crutches to assist her mobility. She lives with her family and according to Joyce, her family protects her well. Now she has her first job with a disability organization. Because of her impairment, she and her family think she needs to be able to support herself in the future. Therefore, Joyce feels she has to learn something to know how to adapt herself to possible future changes in her circumstances. In addition, Joyce desires an intimate relationship; however, she feels her impairment hinders opportunities for such a relationship to develop.
Hilda has had a spinal cord injury at the cervical level for more than eight years because of an accident at work. Therefore, she cannot move her body except for her head and neck. She was more than sixty at the time of interview. She lives with her husband, and a foreign carer who takes care of Hilda and her husband because of her family situation: her husband has had a stroke, her only son is in jail and her four daughters are married. Her daily life centres around her house, and she has regular rehabilitation exercises in the morning at home. One of her daughters lives close by her and comes to see her quite often, providing daily assistance such as helping the foreign carer to transfer her between the bed and wheel chair. Hilda feels that living such a life with a serious impairment is very painful to her. Therefore, she would rather have died at the time when she became impaired than become a burden to her family.
Venice has poliomyelitis and has run a shop for more than twenty years. He was more than fifty at the time of interview. Because of his impairment, he did not go to school until he was ten. When he failed the university entrance exam, he decided to learn the skill of making printing seals. Venice is single and does not want to marry. He had taken care of his sick mother for one year at home by himself, and
19 then found a nursing home for her care. Therefore, the major things in his life at the time of interview were running his shop during the day and going to see his mother at night.
Judy is a friend of Venice. She also has poliomyelitis and sometimes comes to help Venice in his business. Her age is close to Venice’s. She is married to a non-disabled person and has five children. She mentioned she has many non-disabled friends and she often gets support from people around her.
At the time of the first interview, Judy was in Venice’s shop and also agreed to take part in the study as a participant. However, because of her personal issues during the time of conducting interviews, she was involved in only one in-depth interview.
Yugo has cerebral palsy and uses an electric wheel-chair to get around. He was more than twenty at the time of interview. He is a Masters student and lives with his family, comprising his parents and one younger sister and brother. He relies on his family’s support but has found conflict with his parents is unavoidable. Usually, he seems to give in, but he does not accept his parents’ views.
Yugo is fond of his friends and usually has a smile on his face when he talks to people. He likes to make friends with people. So far, he has had no work experience and he says he has never been in love because of his impairment.
Mary has poliomyelitis and uses a crutch. She was middle aged at the time of the interview. Because of her age, she had some complaints about her physical situation at the time of the interviews. She has a small house and two children (one girl and one boy). Her husband and her mother-in-law died last year. Because her son has been in the military and her daughter has studied in another county, she usually lives alone. Mary has received government subsidies for many years, which have assisted with her family’s living expenses. Unfortunately, at the last time of interview, she received a letter saying the subsidies were cancelled. Thus, Mary is encountering a significant loss of both family support and financial support.
Turning to her work experiences, Mary is friendly to people so she often gets others’ help. However, she feels she is discriminated against at work where she does not receive fair treatment from her employers.
20 4. Thesis structure
There are four sections in this thesis.
Section 1 is about “what does this study seek to achieve”. Chapter 1 examines disability in a global context and Chapter 2 in the Taiwanese context. This section concludes by outlining the purpose of the study which is to identify the gap in understanding of lived experience of living a life with an impairment in Taiwan.
Following that, Section 2 details “how was the study conducted”. Chapter 3 considers the conceptual framework and Chapter 4 focuses on methods adopted for exploring the lived experience of living a life with a physical impairment in Taiwan.
Then, Section 3 is concerned with “what did the study find”. Chapter 5 includes the developed theory “it is more than just the impairment” and Chapter 6, 7, and 8 present seven study participants’ stories analysed using the theory.
Finally, Section 4 addresses “what are the implications of the study’s findings”. Chapter 9 considers my reflection on understanding disability and suggestions for building alliances with people with an impairment. Chapter 10 discusses the designed conceptual framework and lived experience of living a life with a physical impairment. Chapter 11 concerns ways to theorize disability.
21 SECTION 1 WHAT DOES THE STUDY SEEK TO ACHIEVE?
People with an impairment can be seen in every country, and they are part of the human condition. Having an impairment is not just about having biological problems of the body or mind. Rather, it is also about how someone lives with this impairment, and in turn what influence the impairment has on a person’s everyday life. Therefore, this thesis is concerned with what it is like to live with a physical impairment in Taiwan. In the process of exploring these phenomena, it was important to consider the Taiwanese context. I asked how having a physical impairment influenced a Taiwanese adult’s ordinary everyday life and how she or he managed these influences. The understanding which emerged from the perspectives of lived experiences will reveal that having a physical impairment is not just about the nature of the impairment. This thesis will provide a closer study of living a life with a physical impairment in everyday life and thus provide a deeper understanding of disability in Taiwan.
The aim of literature review
The thesis will start with an extensive global literature review of disability. The current understandings of disability include the individual model of disability and the social model of disability; and the common experiences of living with an impairment across cultures, such as poverty, prejudice and discrimination. The global picture of disability is provided because it also extends to the Taiwanese context. The individual model of disability and social model of disability emerging from Western understandings of disability have influenced disability legislation and the Disability Rights Movement in Taiwan. Also, the common aspects of living with an impairment are also experienced in the lives of such people living in Taiwan. Following the presentation of a broader picture of disability, I will locate the issue of disability in the Taiwanese context, and focus more closely on the cultural, political and research perspectives. Thus, I will argue the need to investigate the lived experience of people with an impairment themselves to gain a deeper understanding of disability which is able to reflect the subjective reality of living a life with an impairment in Taiwan. This understanding is expected to have implications for inclusion of people with an impairment in society.
In summary, the literature review aims to explore the major understandings of disability in both the global and Taiwanese contexts to highlight the purpose of the study. Section 1 addresses the following two topics:
Chapter 1-- Disability in a global context
22 Chapter 2 -- Disability in the Taiwanese context
23 CHAPTER 1 DISABILITY IN THE GLOBAL CONTEXT
This chapter will provide a global view of disability to give a sense of the complexities of disability from various perspectives. Hence, the first section of the chapter, will start with an examination of two dominant explanations of disability: the individual model of disability and the social model of disability proposed by prominent disability theorists from a Western cultural background. This will give readers a snapshot of what disability is from the current popular views on it, while also presenting an academic criticism of the two models. After that, I will address the common experiences of disability, suggesting that living a life with impairment is far more complex than the impairment itself; the negative experiences people with an impairment encounter are powerful testimonies to the exclusion they suffer in their everyday lives. Finally, I will take some examples of current disability research over the last decade to illustrate the efforts to improve inclusion of people with an impairment.
1.1 Conceptualizing disability in the Western context
1.1.1 Individual model of disability
The development of the individual model of disability follows the phenomenon of Western industrialization in the 18th century and of the medicalization of disability in the 19th century, and has become a dominant approach in interpreting and understanding disability in what Rioux (1997) called “individual pathology” (Barnes, 1998; Barnes et al., 1999; Finkelstein, 1993; Rioux, 1997). Impaired people were marginalized in various ways even before Western industrialization. However, the growth of industrialization and urbanization in the 18th century brought about an emphasis on “productive beings”, that is people who were not productive were excluded from the capitalist labour market (Barnes, 1998; Barnes et al., 1999). Hence, people with impairments were regarded as those who could not meet the productive pace with the new machinery-based work system in society, and therefore, were excluded from mainstream employment and life opportunities. As a result, they have been viewed as a potential or very real drain on limited social resources, and they have been seen as a subordinate group different from the general (dominant) social groups (Barnes, 1998; Barnes et al., 1999; Finkelstein, 1993; Priestley, 2001a).
The rise of the medical profession in the 19th century enabled it to establish the power to exclusively deal with illness and impairment, and people with impairments thus became a target group characterized by degrees of severity and
24 treated by medical experts (Barnes et al., 1999). Barnes, Mercer and Shakespeare (1999) suggest that “this medicalization of disability represented the establishment of an ‘individual’ model of disability that became the professional, policy and lay orthodoxy through the twentieth century” (p. 20).
There are two central points within the individual model of disability. First, disability is regarded as the problem of the individual; second, either the functional incapacity or psychological loss is the cause of the individual problem of disability (Barnes et al., 1999; Oliver, 1996c; Rioux, 1997; Thomas, 1999). Some disability activists such as Michael Oliver and Colin Barnes claim that these two points form the “personal tragedy” theory, which implies the disability is some terrible chance incident which occurs randomly to unfortunate people. In the personal tragedy theory, the disabled individual is considered to be a victim, and someone who needs the care and attention, usually of professionals, and is dependent on others (Barnes et al., 1999; Oliver, 1996c; Thomas, 1999; Vehmas, 2004). This perspective has guided contemporary social welfare policies designed to help those so-called unfortunate people to cope with their disability (Barnes et al., 1999). People with an impairment in Taiwan are no exception to this; indeed, professionals decide whether a disability certificate is issued to impaired individuals to enable them to be eligible to access resources they require (Ministry of the Interior, 2009b).
Swain, French and Cameron (2003) argue that “physical impairment represents a threat to the established notions of discipline and normality because it serves to draw attention to uncontrollable nature – to limitations placed upon the ability of humans to shape and organize the world” (p. 23). Therefore, abnormality seems to be something which needs to be normalized in society. The recommended solution lies in medical intervention with suitable assessments, treatment or intervention as well as rehabilitation by allied medical or rehabilitative experts as the first step to uncovering and addressing the person’s functional limitation (Barnes et al., 1999; Swain et al., 2003; Vehmas, 2004). An individual’s impairment becomes the most important task for medical or other professionals to highlight and then to appropriately provide with specialized intervention. According to the accredited classifications of disability, associated administrative policies or service provisions are established to provide for the professionally envisaged needs for them (Barnes et al., 1999). Swain et al. (2003) suggest that the concepts inherent in the individual model of disability imply that “disabled people have extra or special needs for care, support and help and this is used to legitimize the separate provision of services in areas such as education, housing, public transport, training
25 and employment” (p. 23). It also implies legitimization of the assumed good: dependency and the inferior role of the disabled.
The individual model of disability implies dominant control by medical alliance over the autonomy of the impaired individual. Medical professionals are seen as experts on what is needed for people with an impairment and have the greater capacity or power to decide what kind of life is better for them arguing that their professional suggestions can lead the person to a quality of life which is better than the tragic one (Barnes et al., 1999).
1.1.2 Criticism of the individual model of disability
The individual model of disability has been critiqued by many, especially people with impairments themselves, for stigmatization of impaired people because it labels impairment as the causal factor for disability and loses sight of the environmental and social barriers encountered by them (Barnes, 1998; Oliver, 1996a, 1996c; Oliver, 2009; Rioux, 1997; Thomas, 1999). Swain et al. (2003) contend that “the medical model reflects a framework of thinking about disability that has been and continues to be imposed by non-disabled people upon disabled people” (p. 23).
In the individual model of disability, such words as illness, impairment, and disability, as well as handicap, are all used to refer to disadvantages or deficits which an impaired individual is assumed to carry (Oliver, 1996a). People with impairments are regarded as dependent minorities needing extra care in society, who can hardly fulfil their individual ambitions and who are expected to make every effort to make the best of their life circumstances (Barnes et al., 1999; Oliver, 1996a; Rioux, 1997). People with an impairment are expected by society to improve their functional incapacity to be as “normal” as possible. Professionals thus play a leading role in deciding on and dominating what kind of life an individual with an impairment should live and the types of treatments required (Oliver, 1996a; Rioux, 1997; Vehmas, 2004). The individual model gives professionals the power to see themselves as having the expertise to understand an individual’s impairment.
Also, considerable impairment research and medical interventions are conducted to eliminate impairment or try to normalize physical function (Crow, 1996; French & Swain, 2008; Shakespeare, 2006; Swain et al., 2003). However, this biased, individualistic approach may easily oppress people with impairments because the social arrangements may not coincide with impaired people’s own expectations.
26 Oliver (2009) finds that “this medicalization, underpinned by the individual model, has not delivered adequate services to disabled people who are widely given a low priority when placed against the competing needs of other groups” (p. 44). There is a significant power imbalance in the desire to control the lives of impaired people between the so-called experts and impaired people themselves (Morris, 1993b; Rioux, 1997; Vehmas, 2004; Watson, 2000). Vehmas (2004) concludes that the individual approach “leads to a social and moral marginalization of people with impairments and gives permission to debar them from full participation in society” (p. 209).
1.1.3 Social construction of disability
During the late 1960s and early 1970s, a group of disabled activists and their organizations, which were the pioneer of the Union of the Physically Impaired Against Segregation (UPIAS), formed in Britain started to challenge the medical notion of disability because it sees impairment as the causal factor of disability (Barnes, 1998; Barnes et al., 1999; Thomas, 1999). The social model of disability, which views that disability as a form of social oppression, was initiated and developed by people with impairments themselves and has flourished since the 1980s (Barnes, 1998; Barnes et al., 1999; Thomas, 1999).
UPIAS played an important intellectual and political role in the demand to establish an alternative to the individual model of disability in the United Kingdom (Barnes, 1998; Barnes et al., 1999; Morris, 1993a; Swain et al., 2003; Thomas, 1999). In its ‘Fundamental Principles of Disability’ document (1976), UPIAS conceived of disability as the social oppression and exclusion constructed by society. This was the original formulation of the social model of disability (Barnes et al., 1999; Morris, 1993a; Swain et al., 2003; Thomas, 1999; UPIAS, 1976):
Impairment: Lacking part or all of a limb, or having a defective limb, organ or mechanism of the body. Disability: The disadvantage or restriction of activity caused by a contemporary social organization which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. (Thomas, 1999, p. 14)
The definition by UPIAS was later broadened by the Disabled People’s International (DPI) in 1982 to include physical, sensory and intellectual impairments. Later, Thomas (1999) extended the social model of disability further to encompass the social relational approach. She points out that “disability is a form of social
27 oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional well-being” (p. 156). Her viewpoint of the social model of disability has specifically taken the aspects of impairment effect, gender issues and the psycho-emotional dimension into account.
The central point of the social model of disability emphasizes that an individual’s impairment has no causal relationship with disablement2; instead, disability is the result of society’s failure to remove the social-structural barriers which impaired people face (Barnes, 1998; Barnes et al., 1999; Oliver, 1996a, 1996c; Swain et al., 2003; Thomas, 1999). Thomas (1999) argues that “the social causation or social creation of disability is sometimes referred to as the ‘social construction’ of disability” (p. 14). Within the social model of disability, the social barriers for impaired people refer to the many unequal aspects that they confront, but which non-disabled people taken for granted such as the inaccessibility to public or housing facilities, and limited education and employment opportunities. These barriers also include cultural, attitudinal, physical and economic barriers, which exclude them from participating in mainstream society (Barnes, 1998; Oliver, 2009; Swain et al., 2003; Thomas, 1999). Many people with an impairment have encountered with these barriers in their everyday lives but they are used to them and the experience of disablement has become internalized. Therefore, social modellists argue that disability is a form of social oppression (Bickenbach, Chatterji, Badley, & Ustun, 1999; Thomas, 1999). Moreover, it is society’s responsibility to remove the barriers that impaired people face, and to acknowledge and value the diversity of people; this is not the responsibility of individuals with an impairment (Oliver, 1996c; Oliver, 2009).
One of the significant impacts the social model has had is that it gives an alternative understanding of disability. It challenges the individual model in which disability is viewed as an individualized problem – a model which distracts attention from the responsibility of society to address the needs of all its citizens (Barnes et al., 1999; Swain et al., 2003). Moreover, the social model of disability provides a basis for impaired people to organize themselves collectively to draw attention to the disadvantages of social and economic structures which they must struggle to overcome (Barnes et al., 1999; Oliver, 1996b; Oliver, 2009; Swain et al., 2003). Finally, the contribution of the social model of disability can be seen in its function as a touchstone for people with impairments to raise their awareness of the
2 Thomas (1999) explains that “disability becomes a particular form of unequal social relationship which manifests itself through exclusionary and oppressive practices – disablism – at the interpersonal, organizational, cultural and socio-structural levels in particular societal contexts” (p. 40).
28 oppression they experience and to demand their inclusion in society (Swain et al., 2003; Thomas, 1999).
1.1.4 Criticism of the social model of disability
Using the social model of disability within the UK disabled people’s movement and Disability Studies has revealed some limitations. It has caused internal debates among people with impairments themselves and external critiques from the wider disability research community (Barnes, 1998; Crow, 1996; French, 1993; Morris, 1991b; Oliver, 1996a; Shakespeare, 2006; Shakespeare & Watson, 2001; Swain et al., 2003; Thomas, 1999).
A major debate emerging both from the internal and external criticism is that the social model of disability does not recognize the importance of the effect of impairment or illness in the restriction of activity and resulting life experiences of people with impairments (Corker & Shakespeare, 2002; French, 1993; Oliver, 1996a; Thomas, 1999). Oliver (1996a; 2009) advocates that the social model has nothing to do with impairment when it emphasizes society’s responsibility for removing barriers for people with impairments. In his latest book, Oliver (2009) restates that “the social model is not about the personal experience of impairment but the collective experience of disablement” (p. 48). However, some disability academics with an impairment such as Liz Crow, Sally French, Jenny Morris, and Carol Thomas believe that the social model should include the experiences of impairment. Morris (2006) argues that disablism is a form of oppression, in the same way that feminists see women as an oppressed group. Feminism has existed for longer than disability research, so Morris contends that “disability research itself has much to learn from feminist methodology, such as asserting the personal, subjective experience of women as a legitimate area of research” (p. 286). Furthermore, Thomas (1999) points out the relation between impairment and disability in this extract:
I will use the term impairment effect when referring to the restrictions of activity which are associated with being impaired but are not disability in the social relational sense. Impairment effects may become the medium of disability in particular social relational contexts. (p. 43)
French (1993) argues that “the differing experiences of people with a variety of impairments must be taken seriously or some of those people will be alienated from the disability movement. This will waken the movement both in terms of its membership and the richness of its knowledge” (p. 22).The point in these debates
29 is that some researchers cannot agree that the social model of disability has included the general experience of disability and assert that it should be modified or even abandoned (Corker & Shakespeare, 2002; French, 1993; Shakespeare & Watson, 2001; Swain et al., 2003; Thomas, 1999).
In addition, Vehmas (2004) also proposes that a richer understanding of the concept of disability should include the investigation and conceptualization of the ethical dimension of disability, which includes “objective, subjectivist, and communal aspects that have moral relevance” (p. 219). Other criticisms of the social model refer to the neglect of cultural variations in the understanding of disability (Atkin & Hussain, 2003; Barnes, 1998; Corker & Shakespeare, 2002; Thomas, 1999; Vehmas, 2004) and the exclusion of the experiences of people with impairments from other oppressed groups (Barnes, 1998; Morris, 1993a; Thomas, 1999). Thomas (1999), for example, refers to “gender, sexuality, ‘race’ or age (or combination of these)” (p. 25). Furthermore, the social model is criticised for failing to include some kinds of impairment like learning difficulties, deafness or mental illness (Thomas, 1999).
Although there have been many criticisms of the social model of disability over nearly three decades, it cannot be overlooked that the model has opened a new way of thinking about disability and has challenged society to change. Moreover, it has guided people with impairments to use it to demand their rights through political movements (Oliver, 1996a, 1996c; Shakespeare & Watson, 2001; Thomas, 1999).
Summary: no model is perfect
The individual model of disability and the social model of disability represent two quite different ways of thinking about the nature of disability. Rioux (1997) points out that neither the individual model nor the social model of disability is wrong in its own right. She suggests that “it is the harm these approaches cause by claiming the field of disability as an exclusive domain that is the problem” (p. 106). Likewise, Shakespeare (2006) states “Yet, it seems to me dangerous to conclude that distinction between medical model approaches and social model approaches is robust” (p. 18). From their suggestions, it seems that neither the individual model nor the social model of disability can encompass a comprehensive understanding of the experience of disability. Oliver (1996c) admitted the shortcomings of the social model of disability itself, noting that “we must not assume that models in general and the social model in particular can do everything; that it can explain disability in
30 totality. It is not social theory of disability and it cannot do the work of social theory” (p. 41).
For a better and more holistic understanding of disability, Thomas (1999, 2004b) points out that one way is to increase the dialogue between medical sociology and Disability Studies. Therefore, although there is no absolute map for the best research journey to arrive at the fullest understanding of disability, at least it is clear that separating the individual model from the social model is not an effective means of gaining such a full understanding.
The above points remind me that from my background of occupational therapy and biomedical engineering, it is important to look at a broader understanding of disability constructed in Taiwan. So, does my medical knowledge acquired at university qualify me as an expert in disability? The answer is absolutely “No”. Although medical professionals already have had the background of the individual model of disability, I argue that they should also appreciate the beauty of the social model of disability because each model has an important contribution to make to the understanding of disability. Indeed, the social model of disability has inspired me to find other approaches to understanding disability, that is, to recognize that people with impairments are rightly the experts in disability and to learn about disability from these experts (Knox & Hickson, 2001; Knox, Mok, & Parmenter, 2000).
Thus, it is important to understand their expertise to gain a deeper understanding of disability. Their experience of living with an impairment is a way to approach such expertise. In the next section, I will address the common experiences of living with an impairment.
31 1.2 Common experiences of exclusion across cultures
Is living a life with an impairment just about the impairment itself? If it is only about dealing with the nature of the impairment and not about dealing with the contexts, disablism should not exist. However, life is complex, diverse and multifaceted. It appears that having an impairment in most societies implies living with more difficulties than those without an impairment. It is hard to generalize all the difficulties across nations because of differences in the economic, political, cultural and social structures (Charlton, 1998b; Swain, 2004). This section of the thesis suggests some commonalities that usually lead to exclusion of people with an impairment in society.
To be included in the context where people live their lives is a fundamental human need, and this is equally true for people with an impairment. To deny a person’s inclusion is to deny his or her human rights. Article 19 of the UN Convention on the Rights of Persons with Disabilities (The Office of the United Nations High Commissioner for Human Rights, 2007) contains eight principles. They are:
(a) Respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of persons; (b) Non-discrimination; (c) Full and effective participation and inclusion in society; (d) Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity; (e) Equality of opportunity; (f) Accessibility; (g) Equality between men and women; (h) Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities.
This thesis sets out to explore what other factors that lead to exclusion may be present when one is living a life with an impairment in Taiwan. Readers can then compare these findings with the above statement of rights for people with disabilities. This will provide much imagination to think about how much inclusion, equality, and citizenship impaired people have enjoyed so far in their everyday life.
1.2.1 Poverty
Many academic writers in the disability field would argue that the most common experience of living with an impairment is poverty (Barnes & Mercer, 1995;
32 Charlton, 1998b; Meekosha, 2011; Oliver, 2009; Priestley, 2001a; Stone, 2001; Swain, 2004). People with an impairment are usually the poorest of the poor, whether they live in the developing or developed countries (Manderson, 2004). In the more economically developed areas such as the United States and Europe, impaired people have higher standards of living than their counterparts in poorer countries because they have safety nets to catch “outcasts” before their very livelihoods are called into question; however, this is not necessarily the case in the majority of the world where impaired people live without support from the authorities. Their abject poverty might cause them to depend on begging and charity for survival (Barnes & Mercer, 1995; Charlton, 1998b). Manderson (2004) finds “80 per cent of people with disability live in resource-poor societies” (p. 32). Godrej, as quoted in Meekosha, tells that “the World Bank estimates that 20% of the world’s poorest people are disabled” (Meekosha, 2011, p. 671). In some countries poverty is pervasive. In Cambodia 36% of people live below the poverty line, and 46% of people in Indian live in absolute poverty; in these two countries, malnutrition and appalling sanitation are a common cause of impairment (Gartrell, 2010; Ghai, 2001). In India, women are often in poor health all their lives. They are likely to be less educated and to have more pregnancies. Ghai (2001) points out “low weight girls become the mothers of low weight babies” (p. 30). Thus, their babies are at higher risk of impairments such as polio and blindness which have an incidence four times higher among the poor than those who are more prosperous. Thus, in such cases, poor economic situations produce more people with an impairment, and this phenomenon can negatively impact on the economy of a country. The relationship between poverty and impairment forms a vicious circle.
Also, lack of appropriate work and education leads to poverty for a majority of people with an impairment (Priestley, 2001a). In the modern world, employment is a significant aspect of adult identity, and it is no exception for people with an impairment. However, many impaired people are unemployed, underemployed and underpaid, resulting in extreme poverty for their families (Priestley, 2001a; Turmusani, 2001). It is not hard to find data related to the higher unemployment rate of impaired people compared with non-impaired people in any country (2-3 times higher worldwide) This situation has more significant impacts in the developing countries than in developed ones (for example, the unemployed rate for impaired people in Tunisia is 85% and Zimbabwe 99%) (Turmusani, 2001).
Worldwide, education is an essential requirement for gaining paid employment because it provides relevant knowledge and skills. Yet impaired people have been excluded from education. Furthermore, there are few opportunities for either
33 higher education or employment training, resulting in dependency on others. Turmusani (2001) identifies difficulties in education for impaired people in the majority of the world as “funding and resources, peer and teacher attitudes and education policies all raise barriers to disabled people who wish to pursue lifelong learning through higher education” (p. 198). For example, in India, school culture discriminates significantly against impaired children, so there is no place for such children. Ghai (2001) describes the concept of “integration” as “an illusory concept” in India (p. 32). Turmusani (2001) further points out that even when impaired people do have the opportunity for further education, they are more likely to be unemployed when compared with non-impaired people because of physical and attitudinal barriers.
Lack of education and employment opportunities for survival leads to many people with an impairment and their families being entrenched in poverty (Jayasooria, Krishnan, & Ooi, 2006; Priestley, 2001a). Stone (2001) argues “there is nothing straightforward about poverty, nor about the links between having an impairment and being poor” (p. 61). Stone (2001) and Charlton (1998b) propose that we think in political-economic terms about how individuals, families, and communities are integrated into the system of power and wealth in impaired people’s everyday life. Also, social and cultural systems such as belief systems and attitudes have an influence on it. These factors are not easily separated from one another and should not be divided either, when attempting to understand why many impaired people live a life of poverty because of being excluded from education, work and social support.
1.2.2 Prejudice and discrimination
In addition to material deprivation as the commonality that people with an impairment share, universally negative attitudes towards them override the positive, regardless of cultural differences (Swain, 2004). Jenny Morris (1991b) asserts that “disabled people throughout the world are increasingly naming and confronting the prejudice which we daily experience, expressing our anger at the discrimination we face, and insisting that our lives have value” (p.1). Her illustration of prejudice and discrimination against people with an impairment captures the common experience that they face in both developed or developing countries, notwithstanding that not all of them are likely to express their anger when even their basic living needs are not met (Barnes & Mercer, 1995; Manderson, 2004). The situation is particularly unfortunate for impaired women and people with an intellectual disability because they are often located at the lowest
34 socio-economic level, and those with an intellectual disability are frequently unable to contribute to production (Barnes & Mercer, 1995; Manderson, 2004). Therefore, they are likely to be even more devalued than others with an impairment.
Shakespeare (1997) argues that prejudice is “not just interpersonal” but also “implicit in cultural representation, in language and in socialisation” (p. 233). For example, the terms for disability: “invalid, chirema, pena, minasalida, ai duan – all signify less human, innately inferior” (Charlton, 1998a, p. 66); many impairment-related characters in Chinese consist of animal radicals or lifeless components (Stone, 1999). These terms symbolize how people with an impairment are dehumanized by assigning meaning through language. Also, through religion and the mass media which depict people with an impairment as being pitiful and abnormal, people with an impairment are patronized and excluded from the dominant group which comprises non-disabled people (Charlton, 1998b). For example, Lois Keith (1996), a physically impaired woman, explains the influence of charity towards people with an impairment as creating “a culture of dependency and we are expected to feel grateful for what we are given” (p. 80).
As for how the media constructs the stereotype of impaired people, “Helen Keller” is an internationally well-known example (Crow, 2000). Crow (2000) concludes that Helen Keller has become a problematic icon. She describes Keller:
as the little deaf blind girl, the ‘miracle child’ who triumphed over adversity. However, behind the image, hidden from the public gaze, was a flesh-and-blood woman, writer and radical activist, suffragette and Socialist. She was a woman who lived to old age, yet is fixed in the public imagination as an eternal child. (p. 845)
Likewise, in Taiwan, there is a well-known man, Feng-Xi Zheng who had a congenital foot impairment. His story was made into a film titled “he never gives up”, which had a great influence on how the public view people with an impairment. People would expect impaired Taiwanese individuals to make an effort to overcome their hardships and not be defeated by the difficulties brought about by the impairment ("Zheng, Feng-Xi," 2010). These examples of successful people with an impairment evidence how the media construct stereotypes of impaired people, and how impaired people are expected to fight against the difficulties they encounter with great effort, otherwise they might be seen as being useless and degraded. This implies that society usually holds prejudiced and discriminative attitudes towards impaired people, and does not include them.
35 Shakespeare and Morris have similar views on the explanation of prejudice against impaired people. Shakespeare (1997) says: “disabled people could be regarded as Other, by virtue of their connection to nature; their visibility as evidence of the constraining body; and their status as constant reminders of mortality” (p. 228). Morris (1991b) believes that the cause of prejudice against people with an impairment lies in difference. She illustrates: “prejudice is associated with the recognition of difference and an integral part of this is the concept of normality” (p. 15). This pervasive and discriminatory attitude against people with an impairment has a serious impact on their lives. For example, many people with an impairment encounter difficulties in initiating and sustaining social relationships. For example, Taub, McLorg and Bartnick (2009) examine how physical and social barriers affect disabled women’s social relationships in a rural region of the USA. They found it is not just about the physical barriers in relation to the physical environment and physical nature of the impairment. Also, social barriers, including others’ preconceptions of disability and limited options for forming relationships, impede the initiating and maintenance of social relationships. In countries such as Jordan, impaired men face great difficulties in starting sexual relationships, and impaired women are even denied the rights to this in the first place. They are perceived by society as being sexually impotent so that they are unlikely to be able to have a family (Turmusani, 2001). In many countries, the fundamental needs of sexuality and intimacy for people with an impairment are not recognized. For instance, in India, Ghai (2001) finds “disabled people are constructed as largely asexual, encouraging the repression of their sexuality” (p. 34). Some studies indicate that people with learning difficulties in Iceland and Australia face prejudice and discrimination regarding sexuality and parenthood (Bjornsdottir & Traustadottir, 2010; Johnson, Traustadottir, Harrison, Hiller, & Sigurjonsdottir, 2001). Bjornsdottir and Traustadottir (2010) conclude that people with learning difficulties are seen as eternal children who are “asexual, incompetent and dependent on family and professionals” (p. 54).
It seems people with an impairment often need to counteract the common experience of prejudice and discrimination they experience in their social relationships in their everyday life. Keith (1996) posits that “disabled people have to work continually against destructive forces which see us as powerless, passive and unattractive” (p. 70). The worst thing about prejudice and discrimination for many people with impairments is that they are unable to voice their anger and may even feel that their lives are not worth living. For example, in an abjectly poor context such as India, having an impaired child is considered a fate worse than death (Ghai, 2001). Influenced by eugenic ideology, a mother killed her impaired
36 baby in Japan because she perceived having an impairment as a fate worse than death (Hayashi & Okuhira, 2006).
The emergence of the disability rights movement in Japan started from the maltreatment in the institutions for people with an impairment. According to Hayashi and Okuhira (2006), a woman who had worked in an institution for impaired children in Japan described the situation of severely impaired children being “left in unsanitary conditions and never bathed. They smelled badly, and flies gathered over them and laid eggs in their bed sores” (p. 204). Similar maltreatment of impaired children also occurred in other countries like Taiwan before 1980 (Hsieh, 1997). Before the Japanese disability rights movement emerged, impaired adults in the institutions were often seen as “guinea-pigs” by the doctors for medical research such as “lobotomy and autopsy” (Hayashi & Okuhira, 2006, p. 207). In China, the government has not prioritized disability policy to support people with an impairment, so these people rely on family support rather than the government. Without family support, only a few impaired people are fortunate to receive institutional care. Hence, independent living for most people with an impairment in China is unattainable (Fisher & Jing, 2008). This reflects the notion that the lives of people with an impairment in China are not worth living compared to those without impairment.
Historically, many examples show the lives of people with an impairment are perceived as not worth living and that they exist in poverty-stricken conditions. They are excluded from the mainstream of society. However, the principle of the social model of disability which sees disability as a form of oppression, constructed by society, has underpinned the development of disability policy in some countries since 1990s as a way to achieve social inclusion of people with an impairment (Bigby & Clement, 2009). The social model successfully shifts the attention of disability from the individual impairment to the removal of social barriers for an inclusive society (Bigby & Clement, 2009; Chenoweth & Stehlik, 2004). Thus, with many disability rights movements in different countries such as the UK, US, Canada, Taiwan and Japan, and with the global trend to emphasize human rights for people with an impairment (such as enforcing the UN Convention on the Rights of Persons with Disability (CRPD) in 2008), perceptions of disability have been changing to argue for the rejection of barriers to community participation for people with an impairment (Barnes & Mercer, 1995; Chang, 2007; Hayashi & Okuhira, 2006; Hsieh, 1997; Jayasooria et al., 2006; Kim, 2010; Oliver, 2009).
37 1.3 Disability research around inclusion
In the previous section, the common experiences of exclusion for people living with an impairment across cultures have been described. These experiences, including poverty, prejudice and discrimination, are emerging as facets of impaired people’s everyday life. Therefore, it is easily understood that people with an impairment might have smaller social networks than non-disabled people because they are unlikely to be accepted by others. Researchers like Bigby and Clement (Bigby & Clement, 2009) have worked towards enhancing the inclusion of people with an intellectual disability. Their contribution can also apply to people with a physical impairment who had similar experiences of exclusion. These researchers use O’Brien’s (1987) concept of ‘community presence’ and ‘community participation’ in relation to people with an intellectual disability to present evidence on true social inclusion (Bigby & Clement, 2009). They argue that community presence but minimal interaction with other community members does not mean that these people enjoy their community membership. In fact, they are more likely to experience lack of belonging or being part of their communities, which are important elements of inclusion. But for many people with an impairment, having a presence in the community is a prerequisite for participation because opportunities for developing personal social relationships are created; however, it does not guarantee that relationships will be built or sustained (Bigby & Frawley, 2010).
In recent years, social inclusion of people with an impairment has gained more attention. Increasingly disability studies aim to remove barriers to enable greater inclusiveness for this group of people. Qualitative research that allows those with an impairment to participate can allow the oppressed voice to be heard, valued and to be included. For example, in Western countries like New Zealand, a participatory action research project (Milner & Kelly, 2009) aimed to develop an understanding of community participation of people with an impairment and thereby aiming to reduce their experiences of exclusion. The attributes of feeling a sense of community belonging is identified as self-determination, social identity, reciprocity and valued contribution, participatory expectations, and psychological safety (Milner & Kelly, 2009). Likewise, in Australia Chenoweth and Stehlik (2004) discuss the potential of applying social capital in building an inclusive community for people with an impairment and their families. Moreover, in Iceland, Bjornsdottir and Traustadottir (2010) explore the intersection of disability, class, gender and religion in the social participation of young adults with learning difficulties. They apply inclusive life history research and intersectional theory to gain such an
38 understanding. Their findings challenge the simplistic individual model of disability and recognize the different interconnected social systems of oppression among Icelanders with learning difficulties. Their study shows how the research collaborators resisted the socially constructed oppression and acted as competent social actors. Also, French and Swain (2006) use oral history from visually impaired people to illuminate their experiences of education, and to highlight the implications of inclusive educational policy and practice.
Turning to related disability research for inclusion in Eastern countries, for example, Gatrell (2010) uses ethnography to study the everyday experience of people with a physical impairment relative to work in rural Cambodia. The findings show how embodied differences between able and disabled people in this particular socio-spatial place leave disabled people marginalised in the labour market. Likewise, Fisher’s and Jing’s study (2008) shows that the Chinese government provides little support for independent living such as personal assistance and community-based housing for people with an impairment. Their findings on independent living policy in China suggest ways forward to social inclusion of people with an impairment. From the above disability research in either Western or Eastern contexts, these studies pay attention to the lived experience of people with an impairment in a specific culture. Such studies aim to encourage the inclusion of people with an impairment in the context where they live their lives.
As for fostering inclusion of people with an impairment from different backgrounds, Albrecht, Devlieger and Hove (2008) studied the lived experiences of disabled Iranian, Moroccan, Turkish, Jewish and Congolese immigrants to Belgium. Likewise, Atkin and Hussain (2003) interviewed young Asian disabled people, their siblings and parents who live in the UK to gain their views of disability in a broader context. Their findings suggest the disability politics should take into account the “diversity” of people with an impairment in society. These studies try to address the inclusion of people with an impairment in a multicultural context.
In addition, Lutz and Bowers (2005) argued that how well impaired individuals integrate “disability” in everyday life might reveal how well they are included in the community. Therefore, their research investigated how Western people with disabilities perceived the experience of disability in their everyday lives (Lutz & Bowers, 2005). The study participants in their research included 17 interviewees with a physical disability from a related research project, 21 internet interviewees with disabilities, 4 published autobiographies by persons with disabilities as well as 1 anthology by women with spinal cord injuries. Their findings suggest that
39 disability is a multifaceted, complex experience that is integrated into the lives of persons with disabilities. Thus, they criticize the simplicity of both the medical and social models of disability in understanding disability and ICF 3 which is still basically constructed on the disabling disease or health condition. Thus, the authors argue, further research is needed to examine how people with disabilities manage the influence of disability in their lives, and consider how to develop a conceptual model that reflects their subjective experiences. Lutz and Bowers (2005) find:
A conceptual model that illustrates the experience of disability needs to be person centered; that is, it needs to reflect how persons with disabilities perceive themselves, their lives, the context of their lives, the resources they need to live their lives, and how disability (as they define it) influences their lives. (p. 1051)
I also agree with their views on developing a conceptual model which is able to address the multiple interactions between people with an impairment and the context in which they live. If this can be achieved, then this model might be able to reflect the extent which people with an impairment see themselves included in the community, and to suggest ways for building an inclusive world. With this in mind, this study aims to explore the topic of living a life with an impairment in Taiwan from the perspectives and experiences of a group of people with a physical impairment. It aims to see how they perceive being included in Taiwan, and to suggest ways to achieve inclusion.
Having addressed disability in a global context in this chapter, this thesis now shifts the attention to Taiwan. Morris (1993) says that “the experience of physical impairment is similarly socially constructed….an individual’s experience of a particular impairment must be placed within its social context…. the experience of disability is culturally variable” (p. 86). Therefore, one way to understand the essence of disability is to locate it in its context. The next chapter introduces disability in the Taiwanese context. The cultural and political environment in which Taiwanese with an impairment are living their lives will be detailed. Following, related disability research undertaken in Taiwan to enhance inclusion of this group of people will be examined. This will provide a picture of the situation of inclusiveness of people with an impairment in Taiwan. Finally, returning to the
3 The International Classification of Functioning, Disability and Health (ICF) is developed by the WHO, which aims at integrating the medical model and social model of disability for a more comprehensive approach to disability. The ICF was officially endorsed in 2001. However, it has been criticized as its primary construct is based on the medical model (Lutz & Bowers, 2005; World Health Organization, 2010).
40 purpose of the study, the thesis develops an understanding of living a life with a physical impairment, focusing on everyday life and its implications for inclusion in Taiwan.
41 CHAPTER 2 Disability in the Taiwanese context
From a historical perspective, disability in Taiwan is deeply influenced by Chinese culture, such as the major beliefs of Buddhism, Confucianism and Chinese characters. The long-term cultural attitudes towards people with an impairment in Taiwan take the form of being discriminative and feeling pity. Therefore, Taiwanese people with impairments are likely to be excluded from society. Such a common experience of people with an impairment in Taiwan is similar to that in many other countries.
Also, in the previous chapter, the individual and social models of disability were addressed to provide a preliminary understanding of disability. Here, these two Western notions of disability are carried over to the Taiwanese context. For example, the individual model of disability has a considerable influence on how Taiwanese people with impairments are categorized and viewed by professionals, the public and politicians. For example, a disability certificate is issued after a professional’s assessment and evaluation. Having such a certificate, impaired Taiwanese people start to be eligible to access social welfare resources. In such a situation, professionals have more power over people with an impairment because they become the gatekeepers for the limited resources provided by the government.
On the other hand, the social model of disability has an influence on the counter force of the cultural understanding and individual model of disability in Taiwan, namely the Disability Rights Movement. The movement argues for the human rights of Taiwanese with an impairment. The impaired activists and their allies use social protests to demand education, election, and employment rights through government policy. They try to reverse the stereotyped views of the public of seeing people with an impairment as being inferior to others. This movement, influenced by the social model of disability, asks society to see its responsibility to meet the needs of people with an impairment, and to deal with the issue of disablement which people with an impairment face.
This chapter examines disability in Taiwan more closely. Hence, the Taiwanese context as the cultural understanding of disability, the political aspects of the Disability Rights Movement and disability legislation, and current disability research for inclusion of impaired people will be explored. Then, this will provide an understanding of the context in which the study takes place.
42 2.1 The cultural understanding of disability in Taiwan
Betancourt and Lopez (cited in Hatton, 2004) define culture as “aspects of individuals’ physical and social environments that are shared by a group, and are learned or transmitted across generations” (p. 45). For the purpose of understanding living a life with an impairment in Taiwan, it is necessary to address the cultural understanding of disability because, as Charlton (1998) maintains “culture exerts a profound influence on the way in which people think and what they think” (p. 51). The term “disability” does not exist in some cultures, such as many African countries and many Indian tribes, and the meaning of disability is different from culture to culture (Iwakuma & Nussbaum, 2000; McCollum & Chen, 2003; Mink, 1997; Whyte & Ingstad, 1995). Hence, the meaning of disability is socially constructed and also is culture-dependent (Charlton, 1998b; McCollum & Chen, 2003).
The role of culture is important in this study as one of the key elements in understanding living a life with an impairment in Taiwan. It is necessary, therefore, to point out which aspects of culture are relevant and how they operate (Hatton, 2004). To explore the cultural understanding of disability, it is necessary to study a culture and its concepts of disability (Berry, Poortinga, Segall, & Dasen, 2002; Huang, Fried, & Hsu, 2009; Miles, 1995). In Taiwan, the three strongest influences on the cultural understanding of disability are traditional Buddhist beliefs, Confucianism and the Chinese language, which all have a salient impact on Taiwanese values, attitudes and behaviours in the interactions between self and society (Berry et al., 2002; Chang & McConkey, 2008; Charlton, 1998b; Huang et al., 2009; Iwakuma & Nussbaum, 2000; Miles, 1995, 2000, 2002; Shih, 1996). These cultural factors, in their own right and in combination with others, embody the cultural understanding of disability in Taiwan.
2.1.1 Traditional Buddhism
2.1.1.1 Buddhist beliefs and their influence on the understanding of disability
The major beliefs of Buddhism are reincarnation, karma and fulfilling one’s dharma which all suggest that disability is a type of temporary suffering in this existence for the soul to progress to perfect Nirvana or Perfect Understanding (Hawkins, 2004; Miles, 1995, 2000, 2002).
i) Reincarnation
43 In Buddhism, reincarnation means people have cycles of lives. People’s right and wrong conduct in the past influences their fair and just happiness or their suffering in the present (Miles, 2000).
ii) Karma
Reincarnation forms the notion of karma. Miles (2000) refers to karma as “the observable fact that some people live with a life-long severe impairment of body or mind has often been interpreted as an inevitable outcome of personal misdeeds in their earlier lives” (p. 611). He also suggests karma is more usefully interpreted as an educational force rather than as a retributive destiny. From ancient Buddhist disability tales, the purpose of people being reborn disfigured or suffering humiliation is to make progress towards perfection.
iii) To fulfil one’s dharma (Perfect Understanding or perfect Nirvana)
The other vital belief of Buddhism is to fulfil one’s dharma. Miles (1995) points out that fulfilling one’s dharma is to “embrace right conduct, right mentality, living the life one should live, and being the person one should be” (p. 59). Hence, fulfilling one’s dharma places considerable stress on ‘mental development’ in which the mind is seen as a state of emptiness with no obstacles because it has been beyond the limitations of the material world (Miles, 1995; Shih, 1996). A Buddhist may regard disfigurement and the humiliation of reliance on others as a learning process of liberating one’s mind in the journey to Perfect Understanding. This is because it helps people to realize that human desires or appearances are just external things of transience and in the end everything will be empty, without feeling, senses or elements (Hawkins, 2004; Shih, 1996). Therefore, everyone can overcome fear and realize perfect Nirvana as well as become a Buddha (Hawkins, 2004; Miles, 1995, 2000, 2002). Thus, Buddhism gives a positive meaning to suffering, so that being a person with an impairment in the impermanent present can be seen as a way to achieve Perfect Understanding (Hawkins, 2004; Shih, 1996).
2.1.1.2 Influence of Buddhism on the cultural understanding of disability in Taiwan
The major beliefs of Buddhism, such as reincarnation and karma, have an important influence on the cultural understanding of disability in Taiwan (Holroyd, 2003; Huang et al., 2009; Miles, 2002). As a result of people’s preconceived ideas
44 and the government’s insufficient promotion of more enlightened attitudes to disability, many Taiwanese people see people with impairments as reincarnations, as a punishment and even consider that disability might be contagious (Department of Social Affairs of the Ministry of the Interior, 1994; Holroyd, 2003; Huang et al., 2009). For example, individuals with a disability are viewed as useless, an embarrassment, irrational, irritable, and incompetent people or idiots. They are seen as troublemakers as well as a burden on society. They are misunderstood, as well as considered repulsive (Department of Social Affairs of the Ministry of the Interior, 1994; Holroyd, 2003). Therefore, the common attitude toward impaired people is that they are seen as objects of charity. Consequently, there are many instances of disability discrimination in Taiwan due to people’s negative attitudes towards disability and lack of enforcement of the enacted regulations by the government (Department of Social Affairs of the Ministry of the Interior, 1994; Wang, 2002; Wang, 2010b, 2010c). The unequal treatment of people with impairments in Taiwan illustrates that such people are more likely to be isolated and segregated, stigmatized and considered as a disadvantaged minority (Hsieh, 1997; Wang, 2002; Yuan, 1981).
2.1.2 Confucianism as a philosophy in Chinese
Chinese society has been deeply influenced by Confucianism for thousands of years. Confucianism puts great emphasis on family rather than on individuals (Chang & McConkey, 2008). Its influence on Taiwanese culture relating to disability is detailed below.
2.1.2.1 Influence of Confucianism on Chinese family
The Chinese family and relationships among its members has been deeply affected by Confucianism. Families are regarded as the nuclei of society and harmony in the family is regarded as the foundation of a flourishing and prosperous society (Chang & McConkey, 2008; Chiu, 2004; Collinson, Plant, & Wilkinson, 2000; Fu, 1994; Holroyd, 2003; Kuo & Kavanagh, 1994; Shih, 1996; Szalay, Strohl, Fu, & Lao, 1994).
Wu-lun (五倫) is based on the concept of Confucianism. It expresses the five traditional cardinal human moralities in Chinese culture: that between the ruler and the ruled; that between parents and children; that between siblings; that between husband and wife; and that between friends (Fu, 1994). Three relations of wu-lun center on the scope of family (Fu, 1994). Historically, Chinese people have put great emphasis on family morality, and have seen the individual as
45 family-centered and family-dependent (Fu, 1994; Huang et al., 2009; Iwakuma & Nussbaum, 2000; Stone, 1999; Szalay et al., 1994). In the Chinese family, the relationships between parents and children are interdependent rather than independent (Mink, 1997; Szalay et al., 1994). In addition, influenced by the traditional Confucian perspective of ancestors, Chinese stress family origin and respect their ancestors (Szalay et al., 1994). Hence, the family is a unit for enhancing consolidation via kinship and worship of the ancestors (Fu, 1994; Holroyd, 2003; Szalay et al., 1994).
According to Holroyd (2003), influenced by Confucian teachings of a duty-bond obligation as a “right and proper” person (p. 4) and “bringing honor and avoiding disgrace to the family” (p. 5), parents expect their children to become successful people in society and bring a good reputation to their own family (Chou, 1998; Holroyd, 2003; Kuo & Kavanagh, 1994; Shih, 1996; Szalay et al., 1994). Personal behaviors reflect not only the individual but also the family, that is, the family is judged by society as a collective; hence, the achievement of a child is the glory of the family (Kuo & Kavanagh, 1994; Mink, 1997; Szalay et al., 1994).
Another important Confucian teaching of moral conduct in the family is “reciprocity”, which means that giving and receiving constitute moral debts and credits throughout family life (Holroyd, 2003). Thus, parents have the responsibility and obligation to give services to children such as upbringing and education of children and then children will return the gift by taking care of their parents when they grow up (Berry et al., 2002; Holroyd, 2003; Shih, 1996; Szalay et al., 1994) In effect, the family ethic is significantly regulated by filial piety (Chiu, 2004; Holroyd, 2003; Kuo & Kavanagh, 1994; Shih, 1996).
2.1.2.2 Disability within Chinese family
Having a child with an impairment challenges the traditional philosophy of Confucianism in several ways. First, having such a child disturbs family harmony because he or she cannot be expected to conform to social recognition and to transmit cultural knowledge, such as being a right and proper person or bestowing respect in society (Holroyd, 2003; Huang et al., 2009). Second, parents might not expect their children with an impairment to be able to take care of them when they are old and sick, and they seem to have to provide care-giving services longer than those with non-impaired children. This situation challenges the Confucian notions of reciprocity and parent-child obligation within a family (Holroyd, 2003).
46 Having an impaired child is therefore seen as a shameful thing for a Chinese family because the family is apologetic to its ancestors; having such a child also implies unsuccessful social performance because it does not meet the cultural expectation of bringing honor or reputation to the family (Chou, 1998; Holroyd, 2003; Huang et al., 2009; Iwakuma & Nussbaum, 2000; Mink, 1997; Shih, 1996). In addition, to have an impaired child might be regarded as retribution or punishment because of the ancestors’ lack of good virtues or the family’s disrespect for its forefathers (Chou, 1998; Huang et al., 2009; Kuo & Kavanagh, 1994). Therefore, having a child with an impairment can bring immense stress to a family.
According to the United Nations (as cited in Iwakuma & Nussbaum, 2000), this belief that disability stems from supernatural causation brings about two kinds of extreme attitudes toward impaired people: “either overprotectiveness or discrimination” (p. 242). This same dichotomy of attitudes which are influenced by Confucianism exists toward impaired individuals in Taiwan. On the one hand, newborns with an impairment in Chinese culture might lack care and love because families are embarrassed and ashamed by having a disabled child, that is, it is seen as losing face; on the other hand, an impaired child might be overprotected by other family members because of the strong obligation of family ethics to look after the impaired individual (Holroyd, 2003; Iwakuma & Nussbaum, 2000; Kuo & Kavanagh, 1994; Shay, 1990; Shih, 1996; Wang, 2002).
In contrast to the Western valuing of the independence of individuals, because a person is seen as a family-centered and family-dependent being in Chinese culture, the disability issue is more family-concerned rather than society-concerned (Chang & McConkey, 2008; Iwakuma & Nussbaum, 2000; Kuo & Kavanagh, 1994; Mink, 1997; Stone, 1999; Szalay et al., 1994). As a result, impaired people might count on people close to them. Additionally, the family members are seen to have the responsibility to look after an impaired individual (Holroyd, 2003; Iwakuma & Nussbaum, 2000; Mink, 1997). According to a report detailing the living requirements of people with impairments in Taiwan, 92.96% of people with an impairment live in a home-based setting (Department of Statistics Ministry of the Interior, 2006). The high proportion of impaired people living in community settings emphasizes a distinctly cultural phenomenon in Taiwan. It also illustrates the need for researchers conducting research in community settings to understand how people with impairments experience their lives in this context. Such is the purpose of this study.
47 2.1.3 Disability-related Chinese language characters
One of the main realms to understand the attitudes toward disability in a specific culture is language (Charlton, 1998a). Language is a verbalized tool of translation of thought and reflects attitudes and beliefs; language and ‘society and culture’ are affected by each other (Charlton, 1998a). Charlton (1998a) suggests that “the words used to describe disability are loaded with social connotations” (p. 66). As a result, it is crucial to depict the disability-related (referred to as impairment-related in old Chinese times) Chinese characters as part of a cultural understanding of disability in Taiwan .
Here is a succinct introduction to the components of Chinese characters for people who are not familiar with them. Stone (1999) suggests that “each character has at least one Radical or dominant component which assists the grouping of characters in a dictionary and often imparts meaning. Additional meaning and sound are provided by other components in the character” (pp. 137-8). Three categories of disability-related characters are illustrated below:
2.1.3.1 Causation
Stone (1999) finds that causation is seen in numerous impairment-related characters and is most noticeable in terms for mutilation as a punishment, hence ‘cut-off ear’ (刵), ‘cut-off foot’ (剕) and ‘cut-off nose’ (劓) are all characterized with the Knife component (刂). Such a category of impairment-related characters implies that lacking some part of human function causes the impairment.
2.1.3.2 Imbalance
Stone (1999) says that “both impairments and illness are constructed as products or signs of imbalance: internal imbalances of yin and yang, heat and cold; external imbalances in family and social relations, between ancestors and descendants, spirits and mortals, rulers and subjects” (p. 140). Taking one example of “yin and yang” to illustrate how the impairment is seen as an imbalance: in Chinese medicine, health is regarded as the harmonious balance of the dual and complementary forces of “yin and yang” within and between the body and nature; hence, an imbalance of yin and yang accounts for the occurrence and development of illness (Chen, 2001; Kuo & Kavanagh, 1994; Shih, 1996). In other words, disability represents disharmony between these forces. Imbalance is unwanted because it represents a figure of dis-order or disequilibrium counter to the ideal
48 Way ‘Tao’4 (道, Order) (Chen, 2001; Kuo & Kavanagh, 1994; Shih, 1996; Stone, 1999).
Furthermore, the use of the Sickness Radical clearly identifies the perception of impairment as negative and undesirable. For instance, the English words “mute” (瘖) and “lame” (瘸) are structured with a Sickness Radical (疒) in Chinese (Stone, 1999).
2.1.3.3 Dehumanizing characters
Many characters with an offensive meaning, mainly referring to people with an impairment such as ‘idiots’, ‘simpleton’ or ‘mad people’, are structured by Animal Radicals or contain components which impart evil spirits or lifeless objects (Stone, 1999). As a result, the use of dehumanizing and Otherness-creating symbols signifies a cultural attribute of intolerance and non-acceptance of impairment (Stone, 1999). For example, the word “insane” (狂) is structured with a Dog Radical (犭) and “stupid” (呆) with a Wood one (木) (Stone, 1999).
For Chinese cosmologies, Stone (1999) concludes that “the bodymind is perceived as a microcosm of family, lineage, society, state, nature and cosmos” (p. 140). The language of impairment in Chinese has shown a polarity of non-normalcy as against the cosmological norm, Tao. According to Twitchett (as cited in Stone, 1999), even in the Tang dynasty (7th to 10th centuries), for the administration of the public life, an old disability classification system was developed:
All such persons as are blind in one eye, deaf in both ears, lacking two fingers on one hand or three toes from one foot, who have lost either their big toe or thumb, who are bald-headed and without hair, have a chronic discharge, dropsy or any large tumours, shall be considered partially disabled [can ji]. Such persons as are idiots or dumb, dwarfed, with deformed spines, or lacking one limb, shall be considered seriously disabled [fe ji]. Such persons as are completely insane, lacking two limbs, or blind in both eyes, shall be considered totally disabled [du ji]. (p. 144)
The above three historical categories of people with impairments clearly indicate that disability was socially constructed according to the degree of impairment. Moreover, impaired people were excluded from the main social activities because
4 According to Collinson, Plant and Wilkinson (2000), Tao is “the right life for a human being and one in which the ultimate harmony of the cosmos is celebrated, communicated and shared” (p. 235).
49 they stood for the Chinese cosmological concept of not-complete heterodox (Iwakuma & Nussbaum, 2000; Stone, 1999).
However, because of the influence of Disability Rights Movement in Western countries, some changes to combat the stigmatization of people with an impairment in Taiwan were initiated in the 1980s (Henghaoc, 2006). Firstly, initiators of the Disability Rights Movement in Taiwan in the 1980s started to abandon the term “the handicapped” (殘障) applied to people with an impairment (Henghaoc, 2006). After that, following several further amendments of the disability legislation, the more acceptable term “disability” (身心障礙) has replaced the more discriminative word “handicap” in the legislation since 1997 (The Legislative Yuan of R.O.C., 1997). This change of how to refer to people with an impairment demonstrates that the mixture of both Western concept of disability and cultural understanding of disability in Taiwan has emerged. This change is reflected in the disability–related characters people have used over the last three decades. Further details of the development of the Disability Rights Movement and Disability legislation in Taiwan are illustrated in the following two sections 2.2 and 2.3 respectively.
In a word, it is useful to address the Chinese language for a context-bound understanding of disability, which communicates how people perceive impairment and disability through interpreting the implication of impairment-related characters (Iwakuma & Nussbaum, 2000; Stone, 1999). It has had long-term influences on the cultural understanding of disability in Taiwan.
Summary
From the above discussion, the interlacing of the influences of traditional Buddhism, Confucianism, and language on disability reflects the unique cultural understanding of disability in Taiwan. This cultural understanding shows people with an impairment in Taiwan have tended to be excluded by their own culture because of devalued perceptions and attitudes towards disability embedded in Buddhism, family relationships and other social relationships, as well as in Chinese characters. This section has given a representation of a cultural environment in which Taiwanese people with impairments are living their lives. Thus, it is critical to explore their perceptions of their experiences amid this environment. The following section will introduce the Disability Rights Movement in Taiwan, which aims to reverse the exclusion of impaired people and to demand their rights.
50 2.2 The development of the Disability Rights Movement in Taiwan
The Disability Rights Movement in Taiwan began as a social protest movement led by Taiwanese people with impairments to advocate for their rights in the 1980s. It was influenced by a growing movement of social protest among disabled people in the United States in the late 1960s and 1970s (Barnes et al., 1999; Hsieh, 1997). Significantly, despite the growth of social welfare in Taiwan, it was also the first social movement lobbying for legislative change (Hsieh, 1997; Oliver, 1996c; Shieh, Chang, & Huang, 2005; Wanne, 2002). Further discussion of the development of the Disability Rights Movement in Taiwan follows.
The Disability Rights Movement in Taiwan grew out of concerns of parents for children with intellectual disabilities – it was a concern for this group of people that initiated the Disability Rights Movement in Taiwan and subsequently influenced the wider rights movement of other impairment groups, such as people with a physical impairment. Hence, the historical development of the Disability Rights Movement in Taiwan will be discussed around people with an intellectual disability first, and then be linked to other people with impairments.
According to Ma (as cited in Hsieh, 1997), the Child Welfare Law in Taiwan was promulgated in 1973. One of the regulations of this law was that the government should fund or subsidize the private sector to establish educational and residential institutions for children with intellectual disabilities and institutional care for disturbed children. Its purpose was to accommodate these children with severe physical or mental impairments, who were viewed as not suitable to remain with their family at home. It reflected the negative attitudes of the policy makers and perhaps also of the wider society towards children with impairments, because their rights were not recognised and they were not treated as people. Before 1979, education for people with intellectual disabilities in Taiwan lacked a systematic approach, and severely impaired people were deprived of education rights by school entrance standards, especially those with an intellectual disability who could not meet the standard required by the educational facilities (Hsieh, 1997). In 1980, the enacted Handicap Welfare Law was applied to seven “malfunctions”, one of which was intellectual disability (The Legislative Yuan of R.O.C., 1980). According to the International Classification of Diseases, “intellectual disability” in the Taiwanese Handicap Welfare Law referred only to people with severe intellectual disability (Hsieh, 1997). Additionally, people with moderate and mild intellectual disability were excluded from education for people with intellectual disabilities and the Handicap Welfare Law respectively (Hsieh, 1997). Thus the government did not
51 play an active role in providing social welfare measures for people with intellectual disabilities but assigned the caring responsibility to private institutions or families.
Moreover, according to the Society of Renjian Investigative Report (as cited in Hsieh, 1997), the quality of institutional care for children with impairments was appalling. Because these children were unhealthy and lived in an uncaring as well as unclean environment, their bodies smelled foul and some developed contracture of limbs, skin infections or pressure sores. Perhaps society, government, and some parents acquiesced in the existence of such a negligent caring situation for impaired children. In a word, children with impairments were neglected and mistreated at that time.
During the early 1980s, there already existed some institutions and parent associations for people with an intellectual disability. On the one hand, these parents shared their experiences and feelings towards taking care of intellectually impaired people. On the other hand, the interaction between parents and professional personnel had increased (Ma, as cited in Hsieh, 1997). As a result of indifference or neglect of their educational rights, professionals involved in special education for people with intellectual disabilities and parents with intellectually disabled children advocated together for the education rights of these children (Hsieh, 1997).
Hsieh (1997) states that therefore, on the 2nd March, 1987, over 100 representatives of parents of children with an intellectual disability went to the Taipei municipal government to plead for education and living rights for intellectually disabled children and adults respectively. This was the beginning of the Disability Rights Movement. Following this, many individual groups with impairments also started to propose specific topics for discussion to the Legislative Yuan or government departments (Hsieh, 1997). They used strategies of stating and pleading, petition, protest, as well as propaganda to demand their rights which had been neglected and limited for a long time (Hsieh, 1997; Shieh et al., 2005).
In 1987, the government suddenly shut down the patriotic lottery, for which many Taiwanese people with impairments sold tickets to earn their income, thus taking away these people’s livelihood (Shieh et al., 2005). Moreover, at this time, due to the physical barriers of the university entrance exam and the qualification issue of the impaired legislator candidate, Hsia Liu, groups of people with impairments started to gather together to demand their rights in 1989 (Hsieh, 1997; Shieh et al., 2005).
52 For the purposes of solidarity and the reflection of different opinions among the groups of people with impairments, the Action Committee on Welfare Promotion Amendment (the Action Committee) was initiated in 1989. This was the former body of “the League of Welfare Organizations for the Disabled” established in 1990 (Hsieh, 1997; Shieh et al., 2005). The League of Welfare Organizations for the Disabled has been the voice of Taiwanese people with impairments. It advocates for the rights and welfare of people with impairments by demanding legislative change and raising public awareness (Chang, 2007; Shieh et al., 2005). In March 1989, legislator Zhao adopted the opinions of the impaired groups to make the amendments to the Handicap Welfare Law, obtaining 39 legislators’ signatures, and formally made a proposal to the Legislative Yuan of the Republic of China (R.O.C.). In April, the Action Committee originated, taking more than 70 groups with more than 500 people with impairments to the Legislative Yuan to state and plead for their requests because the Handicap Welfare Law had not had any significant achievement in the preceding ten years (The League of Welfare Organizations for the Disabled, 2001). The Handicap Welfare Law was sarcastically called ‘handicapped Handicap Welfare Law’ by most Taiwanese with impairments (Shieh et al., 2005). Hence, it was hoped that the amendment would be passed as soon as possible to increase social welfare expenditure by the government. A tangible outcome of the social protest was to force the first amendment of the Handicap Welfare Law in 1990 (Hsieh, 1997; Shieh et al., 2005; The League of Welfare Organizations for the Disabled, 2001). One of the major achievements of this amendment was to include the employment quota of people with an impairment (Chang, 2007).
Chang (2007) states that many social movements have flourished since “the first general election for the Legislative Yuan was held in Taiwan signifying the end of the authoritarian regime” in 1992 (p. 14). Since then, the League of Welfare Organizations for the Disabled and the Parents’ Association for Persons with Intellectual Disabilities have worked together on disability rights issues “in legislating, supervising and promoting public policy” in Taiwan (Chang, 2007, p. 15). Whilst these organizations made efforts to work with the state, they also worked against it. To conclude, Chang (2007) and Wang (2008) argue there is still a need to improve the rights of people with an impairment in Taiwan. Hence, they recognize the importance of a social movement for change.
Summary
From the previous discussion of the Disability Rights Movement in Taiwan, it can be
53 seen that the purpose of this movement was to assert the human rights of people with impairments, who had experienced discrimination and unfair treatment for a long time (Shieh et al., 2005). The League of Welfare Organizations for the Disabled (2001) in the Disability Rights Movement argues that people with impairments are not subordinate people but are people who deserve the same treatment and consideration as other Taiwanese citizens. This is consistent with Oliver’s view, that it is society’s responsibility to give impaired people equal opportunities, and not to oppress them (Oliver, 1996c). People with impairments deserve the chance to make their contribution to society just as everyone else does. In effect, there are some good examples of the achievements of a number of Taiwanese people with impairments in the Disability Rights Movement, such as Liu, Hsia, a woman with a physical impairment. Their contribution to Taiwanese literature and society might have helped to reverse the stereotyped view of disability.
54 2.3 Disability legislation in Taiwan
The previous two sections addressing the cultural understanding of disability and Disability Rights Movement in Taiwan have explained the cultural environment and part of the political environment that people with impairments are exposed to when living in Taiwan. This section will further discuss the political environment for this group of people in terms of disability legislation. In addressing disability legislation in Taiwan, it will portray the political context in which these people live and describe what resources and services they might receive. Thus, the following two topics will be discussed in this section: the development of disability legislation, and its benefits and limitations.
2.3.1 Tracing the development of disability legislation in Taiwan
In Taiwan, disability legislation is the most important social welfare policy for people with impairments. To implement any welfare work for people with impairments, a service must follow the regulations of the disability legislation (Ministry of the Interior, 2009a). The latest disability legislation – Protection Act for Rights and Interests of (Physically and Mentally) Disabled Citizens (referred to simply as the Protection Act) – states the responsibility of competent authority is ‘to promote access-free communities and living environments and to assist the disabled in gaining fair opportunities for education, employment, medical treatment and welfare’ and ‘to provide home care and community care by working together with the private sector to enhance community day care for the disabled and also to enable them to be well cared for in their communities’ (Ministry of the Interior, 2009a). Some significant aspects of the development of social welfare in Taiwan are listed below:
1) Between 1980 and 2009, there were 11 amendments to this legislation – one of the most frequently amended social welfare policies in Taiwan (Ministry of the Interior, 2009b; Wanne, 2002). 2) The numbers of impaired people, subsidies for impaired people or other institutions for impaired people increased between 2004 and 2008, which implies that social welfare for people with an impairment has been emphasized (Ministry of the Interior, 2009a). 3) In the development of social welfare in Taiwan, disabled groups have pioneered the development of social movements by other minority groups (Shieh et al., 2005; Wanne, 2002).
55 The content of the legislation usually reflects the social value of impaired people in society (Wang, 1994). Hence, tracing the historical development of disability legislation can provide an understanding of disability from the perspective of social welfare policy in Taiwan. The most important progress of disability legislation from 1980 to 2007 is described below and summarized in Table 1.
Table 1: Summary of the important development of disability legislation in Taiwan from 1980 to 2007 Enacted Act Date of promulgation Enacted text
Handicap Welfare Law June 2, 1980 Charity assistance without integral function, passive attitudes of policy
Handicap Welfare Law January 24, 1990 Based on charity assistance, but starting to look at their legal rights
The quota of employment of people with an impairment was first included Handicap Welfare Law June 16, 1995 To expand the scope of definition of the handicapped to include people with chronic psychosis
Physically and Mentally April 23, 1997 More acceptable terminology against Disabled Citizens discriminatory language Protection Act Legislative spirit: full participation and equal opportunity Physically and Mentally June 25, 2003 To promote employment opportunities for Disabled Citizens the disabled Protection Act Protection Act for Rights July 11, 2007 To provide individual support, family and Interests of support and support for participating in (Physically and social activities for the independent living Mentally) Disabled of disabled people (Welfare services Citizens (Protection Act) support services)
To adopt ICF to classify the disabled
To increase the quota for employment of people with an impairment
1980
The Handicap Welfare Law was promulgated on June 2, 1980, and consisted of 26 enacted articles ("Handicap Welfare Law," 1980; The Legislative Yuan of R.O.C., 1980). “The law was enacted with the goals of maintaining the livings of handicapped persons (referred to as disabled people since 1997), conducting welfare measures and providing self-sustained assistance” ("Handicap Welfare
56 Law," 1980). At this time, the government provided charity assistance and lacked detailed standards about quality of service and was neglectful towards impaired people as can be seen from the regulations in the Handicap Welfare Law (Wang, 1994; Ye, 2002).
1990
The Handicap Welfare Law was first amended in 1990, and increased to contain 31 articles (The Legislative Yuan of R.O.C., 1990). Its objective was to maintain the livelihood and legal rights of handicapped people, conducting welfare and charity measures as well as providing self-sustained assistance (The Legislative Yuan of R.O.C., 1990). From its context, it can be seen that the policy for impaired people was based on charity assistance, but the government had commenced to consider their legal rights at this time. The employment quota of people with an impairment was first included in this amendment; it required that at least one impaired employee be hired in the private sector businesses with more than 100 employees, and for the public sector with more than 50 employees (The Legislative Yuan of R.O.C., 1990).
1995
The second enacted amendment was to expand the definition of the handicapped to include people with chronic psychosis in Article 3 (The Legislative Yuan of R.O.C., 1995).
1997
As part of the developmental history of disability policy in Taiwan, on April 23, 1997, the Handicap Welfare Law was renamed “The Physically and Mentally Disabled Citizens Protection Act”. It included significant improvements in its content (as indicated in Table 2). It contained 75 articles and demonstrated the responsibilities of the different competent authorities for people with impairments. Also, it was divided into 7 chapters including general principles, medical treatment and rehabilitation, rights and interests of education, promotion of employment, welfare services, welfare institutions as well as penal provisions (Lin, Wu, & Yen, 2004; Ministry of the Interior, 2004; The Legislative Yuan of R.O.C., 1997; Wang, 2002). Since then, the more acceptable term ‘the disabled’ has been adopted instead of the discriminatory language, ‘the handicapped’, that was used previously. Furthermore, the legislative spirit has been to promote equal opportunity and full participation since then (Shiau, 2002; Wang, 2002). In addition, further
57 amendments in 2001, 2003, and 2004 were based on the skeleton of the Physically and Mentally Disabled Citizens Protection Act in 1997.
2003
The promotion of employment opportunities for people with disabilities was included in 2003 (The Legislative Yuan of R.O.C., 2003).
2007
The latest and most important amendment of disability legislation was on July 11, 2007. “The Physically and Mentally Disabled Citizens Protection Act” was renamed “Protection Act for Rights and Interests of (Physically and Mentally) Disabled Citizens” (referred to simply as Protection Act) (Laws and Regulations Database of the Republic of China, 2007). It contained 109 articles and the chapter of welfare services was renamed ‘support services’, which aimed at supporting disabled individuals, their families, and their social participation. Through these amended procedures, the government expected that impaired people could live independently and contribute to society (Ministry of the Interior, 2009c). Furthermore, because of the international trend of applying “the international classification of Functioning, Disability and Health” (ICF) to classify people with an impairment, the Taiwanese government also decided to adopt it. Hence, professional teams were assigned to identify the deviation or loss resulting from physical or mental impairment and to evaluate what welfare services people with an impairment needed. The evaluation results would influence the issuing of disability certificates and the provision of further welfare services. This amendment would commence implementation in 2012 (Ministry of the Interior, 2009c). The other significant amendment was to increase the quota of employment for people with an impairment and would start implementation in 2009 (Ministry of the Interior, 2009c).
2.3.2 Advantages and disadvantages of disability legislation
Having addressed the development of disability legislation in Taiwan above, its benefits and limitations are now discussed.
Advantages
1) Increased population entitled to the disabled welfare
58 First, because of the expansion of the definition of disability in disability legislation, the number of classified disabling conditions has increased from 7 in 1980 to 16 in 2004 (Ministry of the Interior, 2004; The Legislative Yuan of R.O.C., 1980). Second, because disabled welfare is better than elderly welfare, this has motivated elderly impaired people to apply for the disability certificate (The League of Welfare Organizations for the Disabled, 2009). Therefore, the registered number of impaired people has significantly increased from 154,162 in 1990 to 1,040,585 at the end of 2008, which accounts for 4.52% of the population (Ministry of the Interior, 2009c). The proportion of people with an impairment in Taiwan has increased year by year (Department of Statistics of the Ministry of the Interior, 2008).
2) More acceptable terminology
The term of ‘disabled’ has replaced that of ‘handicapped’ since 1997 (Shiau, 2002; The Legislative Yuan of R.O.C., 1997).
3) The goal of disability legislation has been progressed from providing charity assistance in 1980 to protecting rights and promoting equal opportunity and full participation since 1997 (Ministry of the Interior, 2009c; Ye, 2002).
Disadvantages
1) Due to the lack of comprehension when the legal status of the rights protection in disability legislation was written and implemented, the legislation was found to be difficult to carry out at times. It was particularly difficult to adhere to this legislation when its spirit conflicted with other laws. Therefore, the situation has often caused amendments to this law leading to increased social costs and the production of more bylaws with a lack of policy guides (Wang, 2002).
2) Disability legislation includes evaluation procedures for people with impairments. Its purpose is to identify their needs following which the government provides related services, subsidies and payment. However, this change limits the support people with impairments can receive. The government adopts concrete administrative procedures and stipulates the administrative responsibility of each governmental department. However, it causes the government departments to argue their own job responsibilities for people with impairments. Hence, individuals with impairments have to struggle to get support in different administrative sections and become their own managers in obtaining services in
59 a confusing system (Wang, 2008). The White Book5 was introduced in 2009 to improve such issues, and started implementing its plans in 2010. However, the outcome is not yet known as there is no public report available that has evaluated this strategy.
3) Wang (2002, 2008) finds that the design of disability certificates has been based on the convenience for the government to calculate the population of the disabled, but not on the statistical system of the citizenship. As well, regulations on the issue of disability certificates and classification of the disabled can be adjusted and modified by the central government. For those reasons, the regulated classification and grades have become the only way for people with an impairment to access social welfare resources.
4) The population of people with mental illness in Taiwan has doubled over the past ten years. However, people with mental illness are excluded from the public service and life insurance in Taiwan in consideration of moral risks. While not directly related to this study, this exclusion has become the excuse for discriminating against people with a mental illness in Taiwan (Wang, 2010a).
Summary
Disability legislation provides a welfare and political structure for people with an impairment in Taiwan to gain resources and to protect their human rights. It can be seen that the design of the legislation has progressed through many stages of amendment. However, with a better legislative framework, does it mean that impaired people have a better quality of life and have a greater sense of being part of the community in this country? This question would best be answered by people with an impairment themselves to judge the usefulness of the disability legislation in their lives. This study aimed to seek answers from a group of people with a physical impairment in Taiwan with a particular intent to identify how these participants feel about the legislation in their lives.
5 The White Book for Protection Act for Rights and Interests of (Physically and Mentally) Disabled Citizens [the White Book for short] was introduced in 2009, and aims to coordinate the conflict between different governmental sections, and to deal with practically urgent issues for people with disabilities. Because the government realizes the needs of people with disabilities cannot be cut like business. The Promotion Committees of Social Welfare in Executive Yuan has formed the team across departments for delivering whole life services for people with disabilities. It needs concrete policy plans and goals, and increases or adjusts the resource distribution and service delivery to match the needs of people with disabilities.…in order to operate in coordination with the amendment direction of Protection Act, it sets short, medium and long term plans for integrating the diverse policy procedures in different governmental departments. (The short term is one to three years, medium term four to six years, and long term seven to ten years. It begins in 2010.)
60 2.4 The need to investigate the lived experience of living a life with a physical impairment in Taiwan
The literature review of the cultural understanding of disability has shown the devaluing of people with an impairment and the significant discrimination existing in Taiwan as reflected in the high unemployment rate of people with an impairment and inaccessible infrastructures (Taiwan Disabled Association, 2001; The League of Welfare Organizations for the Disabled, 2001; Wang, 2002; Wang, 2010b, 2010c). Wang (2002) argues that people with impairments in Taiwan, as in many other cultures, are seen as an oppressed or marginalized group. In line with this view, she defines people with impairments as a disadvantaged minority. Hence, ‘protection’ and ‘special treatment’ are defining characteristics of the common relationship between non-disabled and disabled people (Wang, 2002).
However, in the past three decades, many Taiwanese people with an impairment have used the techniques of social protest to demand their rights and an extension of the support they need (Hsieh, 1997; Wang, 2002). For example, the Disability Rights Movement by impaired people themselves challenged the traditional cultural perspectives applied to them. Nonetheless, there is a further need in contemporary Taiwanese society to improve the way people with an impairment are treated and accepted as members of society (Shiau, 2002; Wang, 2002; Wang, 2010c).
The enactment of disability legislation outlined above is beginning to reduce this gap (Yang, 2002). However, although the Handicap Welfare Law was renamed the “Protection Act for Rights and Interests of Disabled Citizens” to reflect more appropriate terminology and has been amended more than ten times since 1980, its content shows that the users of the Protection Act are more likely to be the different level government administrators who manipulate the regulations to rationalize their illogical excuses if the radical spirit of the Act is not enforced. The government does not change its mindset to confront its responsibility (Wang, 2002, 2008). Only the name is changed but the content does not completely meet the needs of people with impairments (Wang, 2008; Wang, 2010a, 2010b, 2010c). Some problems still remain.
The literature review of the Taiwanese cultural understanding of disability, the Disability Rights Movement as well as disability legislation in Taiwan has given a representation of a cultural and legislative environment in which Taiwanese people with impairments are living their lives. It shows impaired people are excluded from the community where they live their ordinary everyday life.
61 However, people living with impairments are members of society first and foremost, and as such should have the same rights as other members (Shiau, 2002; Wang, 2002, 2008; Wang, 2010a); people with impairments have the responsibility and obligation to demand their rights (Wang, 2002). Impaired people can be considered as citizens who make a valued contribution to the society in which they live and who also have the same obligation as other citizens (Wang, 2002). As a result of advances in medical technology, there are more disabling conditions and a growing number of people in the disabled population (Sha, 2005; Shiau, 2002; Wang, 2002). Due to the possible extension of life in the future, everyone might experience living with an impairment incurred as a result of disease, accident, or aging. Therefore, ‘having an impairment’ is not the problem of few people, but could become a life experience of everyone (Zola, as cited in Wang, 2002). In a word, living with an impairment should be seen as a ‘normal’ life issue in the modern world (Priestley, 2001a; Wang, 2002). It is part of the diversity of the human condition.
Kim (2010) argues that “the CRPD6 has placed people with disability on the global agenda, highlighting their need for greater inclusion in society and recognising them as citizens to be valued and respected” (p. 103). Thus, the inclusion of people with an impairment has become a global issue and some disability studies in Taiwan have tried to achieve inclusion of them. For example, an official study by the government investigates the lifestyle needs of this group of people. According to Article 11 in the Protection Act, it states:
the government’s hierarchy of individual levels shall periodically investigate the needs of living, health care, special education, employment and occupational training, transportation and welfare of the disabled at least once every five years, and publish the statistic reports of the surveys (Laws and Regulations Database of the Republic of China, 2007).
This official study is an important reference for enacting social welfare policy and related disability laws to improve impaired people’s quality of life. The latest report in 2006 detailing the living requirements of people with impairments shows the statistics indicating their characteristics, living situations, recreational activities and transportation situations, responses and cost of main carers, family financial situations, the need for medical and social welfare services, educational needs as well as their employment situations (Department of Statistics Ministry of the
6 CRPD: the UN Convention on the Rights of Persons with Disability (Kim, 2010).
62 Interior, 2006). Likewise, to date, the growing body of research in Taiwan in the disability field has tended to pay attention to quantitative studies such as this. However, fewer studies address lived experiences and perceptions related to disability issues, which may provide a deeper and wider understanding of disability. It seems most Taiwanese researchers tend to apply existing scales to access and develop treatment for the group of people with an impairment (Chang & McConkey, 2008). For instance, in research in the last decade, Chou and other co-authors (2007) apply Cross-Cultural Quality of Life Indicators to understand the life quality of adults with intellectual disabilities who live with their families in Taiwan. Their findings suggest that although many people with intellectual disabilities live in the community, they are isolated and segregated because their perceptions of the importance of social inclusion score at the lowest level. Furthermore, Chou, Pu, Lee, Lin and Kroger (2009) study how aging female family carers of adults with an intellectual disability or mental illness perceive the impact of stigma on their life quality in Taiwan. These authors apply four scales to measure the carers’ perceived stigma, health, social support as well as quality of life. Their findings suggest perceived stigma have the most negative impact on quality of life for these two groups of aging female carers.
In addition to quantitative studies aimed at understanding the lives of people with an impairment and their families in Taiwan, some researchers use qualitative studies to gain a deeper understanding of their lives in ordinary community settings, such as exploring Taiwanese parents’ perceptions of and attitudes towards their children with an intellectual disability (Chang & McConkey, 2008; Huang et al., 2009; McCollum & Chen, 2003). Also, Chiu (2001) explores the lived experience of people with an impairment at job accommodation for understanding their needs, difficulties and management for suggesting changes in service provision and the working environment. Wang (2007) investigates how visually impaired users, project workers and visual assistants perceive the “Visual Assistance Service” in Taiwan for arguing for meaningful personal assistance and independent living in service and policy provisions.
From the above research in Taiwan, it is not hard to find some commonalties for understanding how people with an impairment live in the community. However, there is still a lack of depth to the understandings of what it is like to live with disability for people in Taiwan. First, with more studies focusing on applying quantitative methods, it is difficult to generate a deeper understanding of these people’s community lives. Second, when qualitative studies are applied, most qualitative researchers pay attention to people with intellectual disabilities and
63 their families, with only a small amount of qualitative disability research exploring employment or accessing disability services. These studies contribute to the issue of how to improve quality of life and inclusion for people with an impairment in some way but a more in-depth look at the everyday lives of disability in the political and social context of Taiwan was needed.
Living a life with an impairment is complex and also multifaceted. The evolving nature of living with disability, especially in this changing environment of arguing for non-oppressive treatment from Disability Rights Movement, the much amended disability legislation, and over 90% of impaired Taiwanese living in the community, further research exploring how people live with disability was urgently needed (Department of Statistics Ministry of the Interior, 2006). As people with a physical impairment account for the most significant part of the increasing population of people with an impairment in Taiwan, this study was aimed at this population. Taiwanese people with a limb impairment account for around 40%, and those who have more than one impairment are categorized in the group of people who have multiple impairments (nearly 10%). Hence, the precise portion of people with a physical impairment is likely to be over 40% (The League of Welfare Organizations for the Disabled, 2009). Taiwanese studies which offer a deeper understanding of these people’s everyday lives are difficult to find. This implies little opportunity for the voices of people with a physical impairment to be heard or valued. Thus, this qualitative study invited individuals with a physical impairment in Taiwan to take the opportunity to have their say and to have their views acknowledged about their ordinary everyday lives with the impairment in the community.
Vehmas (2004) points out the importance of listening to the lived experiences and perspectives of people with an impairment themselves for conceptualizing a realistic understanding of disability. He says:
The way people without impairments view people with impairments and their chances for well-being and good life inevitably is based on their experience and point of view as nondisabled persons. Thus, when defining disability, without hearing the subjective voices of those seen as disabled, we can only construct an external, the kind of “objective” model that does not explain much of individuals’ experiences – it would merely be a projection, “our” view of “them”. (p. 220)
64 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
Keeping Vehmas’ (2004) comments in mind, in what way can a non-disabled person come to understand an impaired individual’s experiences of and perceptions of living with an impairment? As Oliver (2009) says, “I have argued that the social model of disability is a practical tool like a hammer or a screwdriver…to produce social and political change” (p. 57). This reminded me to think about my original intention of pursuing an understanding of disability not simply from the individual model of disability. Thus, I decided to use the perspective of the social model of disability as a hammer in the study, in which I recognize that impaired people are experts in the understanding of disability in Taiwan. Then, the research study set out to explore their lived experience of living with a physical impairment within the Taiwanese context. Thus, important questions to guide this study included: What are their everyday experiences of living with a physical impairment? What is the meaning of disability legislation for them and what are their experiences of the cultural understanding of disability in Taiwan? These issues were deeply explored and then a grounded theory of living with a physical impairment co-constructed through collaboration between study participants and me to provide a way to the core of understanding disability in Taiwan.
Summary
From the literature review of disability in the global context and Taiwanese context respectively, the purpose of this study aimed to develop an understanding of living a life with a physical impairment in Taiwan from the perspective of a group of physically impaired Taiwanese people’s lived experiences for facilitating their inclusion in Taiwan. The notion of people with an impairment as experts in disability as a basic tenet of the social model was used as a means through which I sought to learn from people with a physical impairment and thus gain a richer understanding of their lives in the Taiwanese context.
Using Foucault’s view of power for social policy, Watson (2000) argues that “power and knowledge are intimately connected and intertwined” (p. 68). Therefore, the knowledge gained from impaired people themselves can be an aspect of power which has implications for policy and service provision, and can lead to a better working and collaborative relationship between people with an impairment and
65 service providers such as myself in some small way (Abberley, 1998; Shakespeare, 1996, 2006; Watson, 2000).
66 SECTION 2 HOW WAS THE STUDY CONDUCTED?
In this section, there are two chapters which detail the research conceptual framework and methods adopted in the study to achieve the study purpose: to develop an understanding of living a life with a physical impairment in Taiwan.
In Chapter 3, a qualitative conceptual framework based on constructionism as the epistemological stance was developed to guide the study to explore what living a life with a physical impairment is like in Taiwan. A Heideggerian view of the person was helpful for me to understand study participants’ lived experience of their lives in the context. The use of constructivist grounded theory assisted me to build a theory based on their lived experience.
In Chapter 4, a pilot study was conducted to trial the research design, and my reflections on the pilot study were incorporated into the study. In-depth interviewing was adopted as means of collecting data, and study participants were seen as research partners in the study. The grounded theory approach, aided by my hermeneutic attitude, was adopted to analyse gathered information. Finally, the issue of research rigor is also discussed.
This section, therefore, provides the rationale of the chosen qualitative approaches and methods used to conduct this study, the purpose of which was to explore living a life with a physical impairment in Taiwan according to those who live these experiences.
67 CHAPTER 3 RESEARCH CONCEPTUAL FRAMEWORK AND DESIGN
The conceptual framework is guided by the principles of qualitative research for understanding how people with a physical impairment live their lives in Taiwan. Table 2 provides an outline of the conceptual framework underpinning this study purpose using the framework suggested by Michael Crotty (2003).
Table 2: Summary of research conceptual framework for the study Research Epistemology Theoretical Methodology Methods strategy Perspective
Induction Constructionism Interpretive Constructivist Purposive Paradigm Grounded Sampling Theory In-depth Interviews
Grounded Heideggerian Theory Interpretive Approach Phenomenology
3.1 Inductive research strategy
Neuman (2006) states that researchers adopting an inductive approach “begin with observing the empirical world and then reflect on what is taking place, thinking in increasingly more abstract ways, moving toward theoretical concepts and propositions” (p. 60). In qualitative research, reality is constructed by study participants, researchers, and later on readers so that multiple realities exist (Creswell, 1998). The qualitative researcher needs to reflect on voices and interpretations of participants and report their realities through evidence of different perspectives on each theme (Creswell, 1998, 2007). In the study, the participants’ statements of or comments on their experiences and perceptions of living their lives with a physical impairment were their constructed realities (discussed below). Using an inductive approach, I was able to explore these realities and then highlight the meaning embedded within such experiences.
Blaikie (2000) refers to the inductive strategy as “consisting of three principles: accumulation, induction, and instance confirmation” (p.103). In relation to the essence of exploring living a life with an impairment experienced by a group of
68 people with a physical disability in Taiwan, appropriate in-depth interviews are required (i.e. accumulation of data) and subsequently a gradual narrowing or focusing of collected data (i.e. applying inductive logic for accumulative data) to generate the understanding or interpretation of these experiences and perceptions (i.e. instance confirmation). Therefore, this study adopted an inductive research strategy to gain a deep understanding of participants’ experiences and perceptions related to living their lives with a physical impairment.
Blaikie (2000) suggests that the inductive strategy consists of four main stages:
1. All facts are observed and recorded without selection or guesses as to their relative importance. 2. These facts are analysed, compared and classified, without using hypotheses. 3. From this analysis, generalizations are inductively drawn as to relations between the facts. 4. These generalizations are subjected to further testing (Wolfe 1924: 450; Hempel 1966: 11). (p.103)
This study used the above mentioned inductive strategy to collect and analyse data. In particular, I used grounded theory principles to look for patterns and themes in the data (Blaikie, 2000). These formed the basis for the development of a grounded theory of understanding of living a life with an impairment generated from a group of people with a physical disability in Taiwan.
69 3.2 Constructionism as epistemological stance
Blaikie (2000) maintains that “an epistemology consists of ideas about what can count as knowledge, what can be known, and what criteria such knowledge must satisfy in order to be called knowledge rather than beliefs” (p. 8). According to Creswell (2007), an epistemological stance involves “the relationship between the researcher and that being studied as interrelated, not independent” (p. 247). Three main epistemological issues defined by Crotty (2003) are objectivism, constructionism, and subjectivism.
Using Crotty’s definition, the epistemology considered most closely oriented to this study was constructionism. As Crotty (2003) states, in constructionism “all knowledge, and therefore all meaningful reality as such, is contingent upon human practices, being constructed in and out of interaction between human beings and their world, and developed and transmitted within an essentially social context” (p. 42). Moreover, “meaning is not discovered” (p. 42) but “constructed by human beings as they engage with the world they are interpreting” (p. 43). From a constructionist viewpoint, as Crotty points out, “strikingly diverse understandings can be formed of the same phenomenon” across a number of people (p. 47).
There are a number of important or defining concepts in constructionism:
It views human beings as residing in a social context in which a ‘system of intelligibility’ prevails (Fish, as cited in Crotty, 2003). People inherit a ‘system of significant symbols’ which guide their behaviour (Geertz, as cited in Crotty, 2003). Crotty (2003) suggests that “constructionism embraces the whole gamut of meaning reality. All reality, as meaningful reality, is socially constructed. There is no exception” (p. 54).
This study adopted constructionism as the epistemological stance. It was hoped that this stance would enable the study to build “useful”, “liberating”, “fulfilling”, or “rewarding” interpretations of disability by understanding how people with a physical disability in Taiwan interpret the way they live their lives (Crotty, 2003). Therefore, a significant aim of this research was to explore what it was like to live with a physical impairment in Taiwan. An interpretation of the experiences and perceptions of these people engaging with their living cultural context was constructed by me through the participants and their stories. In addition, and importantly, it was hoped that the interpretations emanating from the viewpoints of these people with impairments would have the potential to create a new, richer,
70 and more meaningful understanding of disability which was different from the more dominant understanding of disability held in this country (including by medical experts) or challenged the cultural understanding of disability such as reincarnation outlined in Chapter 2.
71 3.3 Interpretive paradigm as theoretical perspective
The interpretive paradigm was considered most appropriate for explaining how living a life with an impairment was perceived by people with a physical disability in Taiwan. The rationale is discussed below.
Neuman (2006) refers to the interpretive approach as “the systematic analysis of socially meaningful action through the direct detailed observation of people in natural settings in order to arrive at understandings and interpretations of how people create and maintain their social worlds” (p. 88). Also, according to Neuman (2006), in a study conducted from this approach, it is appropriate for a researcher such as myself to adopt the constructionism epistemology of social reality, and then to use interpretivism as the theoretical perspective. They are compatible with each other (Table 2).
In this study, people with a physical impairment were considered as experts on their understanding of disability, and I would be able to understand their lives in Taiwan by exploring how they constructed their own reality of disability, and what they considered to be meaningful or important in their life experiences as people with a physical impairment. Furthermore, the subsequent generated theory was grounded in the lived experiences and views of people living with a physical impairment in Taiwan (Blaikie, 2000; Neuman, 2004b).
Therefore, by adopting an interpretive paradigm, I was the learner and empathically sought to understand and interpret the perspectives of impaired people, and then I and participants co-constructed the interpretation from their individual meaning systems to a shared, unique collaboration (Blaikie, 2000; Knox et al., 2000; Neuman, 2000, 2006). Consequently, the aim of generating the understanding of living a life with a physical impairment held by the Taiwanese participants was more readily achieved.
3.3.1 Heideggerian hermeneutic-phenomenology
According to Neuman (2006), hermeneutics, phenomenological and qualitative sociology are among the varieties of interpretivism. Therefore, Heideggerian hermeneutic phenomenology as the further theoretical perspective was adopted. This theoretical perspective is also situated appropriately within the interpretive paradigm. The content of Heideggerian hermeneutic phenomenology and the rationale for its use in the study is discussed below.
72 3.3.1.1 The Heideggerian phenomenological view of the person
According to Heideggerian phenomenology, the view of person derives from the shift of scientifically epistemological weight to the more originally ontological concerns. As Leonard (1994) asks, “what does it mean to be a person and how is the world intelligible to us at all?” (p. 46). As the study had as its main focus how study participants understood and interpreted their lived experiences of living a life with a physical impairment, the Heideggerian phenomenological view of the person bound tightly with human experience needed to be addressed here (Becker, 1992).
As both Leonard (1994) and Orbanic (1999) maintain, Heidegger outlines five aspects of his view of the person. These are:
1) The person as being-in-the-world 2) The person as a being who experiences meaningfulness in the world 3) The person as an interpretative being 4) The person as embodied 5) A person as being-in-time
Before discussing the five aspects of Heidegger’s view of the person, it must be kept in mind that these five aspects are correlative or interrelated, in that understanding of one requires the mutual appreciation and perception of the others (Orbanic, 1999).
1) The person as being-in-the-world:
For Heidegger, the word ‘Dasein’ , existence, or being-there (Becker, 1992; Rice & Ezzy, 1999b; Sarvimaki, 2006) means that human beings are already “in and of the world” (Reed, as cited in Walters, 1995b, p. 793); in other words, people cannot be separated from the world as if it consisted of objects (Becker, 1992; Draucker, 1999; Rice & Ezzy, 1999b). In the phenomenological sense, Leonard (1994) referred to the world as “the meaningful set of relationships, practices, and language that we have by virtue of being born into a culture” (p. 46); and “world is both constituted by and constitutive of the self” (p. 47). ‘World’ as used here is different from the view of traditional science. For hermeneutic phenomenology, people are already being-in-the-world and interact with the world. This notion rejects the dualism of Cartesianism and the concept of intentionality of Husserlian phenomenology.
73 ‘Thrownness’ and ‘situated freedom’ are important concepts of the person as being-in-the-world, and are described below:
Thrownness
As far as thrownness is concerned, Leonard (1994) suggests that people are “always already situated, as being-in-the-world” (p. 47). This means that humans are being “thrown” into a particular cultural, historical, and familial context (Leonard, 1994).
Situated freedom
Turning to the concept of situated freedom, this means that people not only constitute the world but also are constrained by it. In other words, human beings can create various possibilities within the specific culture, language system, and historical background (Leonard, 1994; Orbanic, 1999). The world gives people limited freedom in who they can or cannot become (Leonard, 1994).
In this study, research participants were thrown into the Taiwanese context, that is, they had lived there. Their being-in-the-world was affected and shaped by the Taiwanese context, such as its culture and its language. The primary aim of this study was to explore what living a life with a physical impairment in Taiwan was for a group of people with a physical impairment. In the situated Taiwanese context, a possible understanding of their lives could be formed. The innermost understanding of their lives might be approached by Heidegger’s view of these participants as being-in-the-world in the Taiwanese context (Orbanic, 1999).
2) The person as a being who experiences meaningfulness in the world
Heidegger argues that ‘Sorge’ is the most basic characteristic of Dasein or human existence (Walters, 1995a, 1995b). Sorge in English means ‘care’ (Sarvimaki, 2006). Walters (1995b) points out that “care is about Being and it is about caring for things and other people” (p. 496). “In everyday terms we understand ourselves and our existence by way of the activities we pursue and the things we take care of” (Heidegger, as cited in Leonard, 1994, p. 49). Thus, people experience their life as things mattering, having meaning or value in context (Leonard, 1994; Orbanic, 1999). Leonard (1994) refers to humans’ activities as being “in a transparent, taken-for-granted, non mental way towards the future, the ‘for-the-sake-of’” (p. 49).
74 Therefore, to understand lived experiences, it is necessary to consider people’s world so that the significance and meaningfulness of everyday life that they have can be revealed (Leonard, 1994; Orbanic, 1999). In this study, I sought to understand the participants’ backgrounds, as well as to explore and appreciate the meaningfulness or values they placed on their experiences and perceptions around living a life with a physical impairment (Leonard, 1994; Orbanic, 1999). In doing so, the interpretation of the important themes of living a life with a physical impairment while they were being-in-the-world would be more reflective and appropriate because I was able to find and then understand what participants’ concerns and solicitudes were and why this was so (Leonard, 1994; Orbanic, 1999; Sarvimaki, 2006).
3) The person as an interpretative being
According to Leonard (1994), we are humans because “we are engaged in and constituted by our interpretive understanding” (p. 52). Through the ongoing interpretation of individual-in-the-world -thinking- people can appreciate the meaningfulness of their experiences in context (Leonard, 1994; Orbanic, 1999). This is a process of self-interpretation, thinking as well as self-reflection.
I embraced Heideggerian interpretive phenomenology for this study to understand the lived experiences of living a life with a physical impairment for participants. For me, each interview with the participants was aimed at gaining an understanding of their experiences and perceptions of their lives located in the Taiwanese situation (Leonard, 1994). Because the participants were being-in-the-world and were self-interpreting in the Taiwanese context, it was critical that I adopted an approach of seeking to understand their meanings of their lives with a physical impairment in Taiwan.
4) The person as embodied
The Cartesian notion of the body as object of possession - everyone has an extrinsically mechanical body - is contrary to the Heideggerian phenomenological view of the person as embodied (Leonard, 1994). Orbanic (1999) suggests that “Heideggerian phenomenology emphasizes the primacy of the intimate connection between consciousness and body, or mind-body dualism” (p. 142). Each being experiences emotion, concrete actions, and sensations interrelating with one another (Orbanic, 1999). Merleau-Ponty (1962) states that human bodies have bodily intelligence or body-subject (Becker, 1992; Iwakuma, 2002; Leonard, 1994). The body is a thoughtful, intentional body rather than merely an anatomical
75 structure or extrinsic tool (Becker, 1992; Iwakuma, 2002; Leonard, 1994). Becker (1992) points out that “our bodies are subjects too; they are we. Although we can objectify our bodies, that is, treat them like things to be manipulated at will, they are also our intentional selves” (p. 16).
This position provided a foundation for me whose training background was as an occupational therapist to understand that physical impairment was not just something “wrong” with the person’s objective machine in a superficial sense. It was not merely the problem of dysfunction that disabled people could not use their body as well as non-disabled people to carry out their daily activities. Importantly, it involved a person’s embodiment (Iwakuma, 2002; Leonard, 1994); namely, how one’s physical condition affected one’s life world. Indeed, Iwakuma (2002) points out the aspects of “family life, interpersonal relationships with others, self-image, and the world-view” (p. 80). In this study, these were explored by how participants understood and experienced their lives as a person with a physical impairment in Taiwan.
5) A person as being-in-time
Heidegger used the term, “temporality” to depict the concept of time. Leonard (1994) suggests that Heidegger’s use of this term differs from the traditional Western notion of time “as a linear succession of nows” (p. 54). The common viewpoint of linear time has difficulty answering the interrelation with past, now and future (Leonard, 1994). However, according to the Heideggerian notion of time, the past described as “having-been-ness” relates to the present, and the desire of the future as being-expectant directs the move of the moment (Leonard, 1994; Orbanic, 1999). As Orbanic (1999) points out, “past, present and future can be realized as a simultaneously occurring entity” (p. 142).
Dasein or human existence is involved with temporality (Leonard, 1994; Sarvimaki, 2006). “The temporality analysis of Dasein enabled persons to begin to comprehend the whole of Dasein, which is conceived of existentially as care” (Krell, as cited in Orbanic, 1999, p. 143). To study lived experiences, being should be contextually placed in the entity of past, present and future (Orbanic, 1999). This is because “temporality reveals itself in the everydayness of Dasein, in the “day after day”, “yesterday, today and tomorrow”” (Heidegger, as cited in Sarvimaki, 2006, p. 7). It was important to put participants’ experiences and perspectives in the three time contexts- past, present and future. Then the participants’ awareness
76 of “the very aspect of the self’s being-ness” or care (Sorge) could be perceived (Orbanic, 1999, p.143).
3.3.1.2 Hermeneutic phenomenology
Several different phenomenological philosophies exist (Creswell, 1998; Walters, 1995b). Creswell (1998) refers to them as “reflective/ transcendental phenomenology, dialogical phenomenology, empirical phenomenology, existential phenomenology, hermeneutic phenomenology, and social phenomenology” (p. 53). The phenomenological approach derived from Heideggerian philosophy is regarded as hermeneutic or interpretive (Draucker, 1999).
This study adopted the phenomenological approach of Martin Heidegger. Hermeneutic phenomenology criticizes Cartesian dualism where “the self is always seen as subject and the world or environment as object” (Leonard, 1994, p. 44). Heideggerian hermeneutic phenomenology has grown out of the intentionality concept of Husserl, who views things as the products of human consciousness (Draucker, 1999; Walters, 1995b). Heideggerian hermeneutic phenomenology sees people as already being-in-the-world which is different from the bracketing notion of Husserlian phenomenology in which the researcher needs to lay his or her prejudices aside (Walters, 1995b). Walters (1995a) points out that hermeneutic phenomenology “is based on an existential perspective which considers that an understanding of the person cannot occur in isolation from a person’s world” (p. 138). For Heidegger, humans are also being-in-the-world-with-others (Becker, 1992; Sarvimaki, 2006). As people engage in their world and exist with others they are influenced by such interpersonal frameworks, and in turn, they influence others (Becker, 1992). In this study, an exploration of living a life with a physical impairment in the community implied that the participants’ realities were influenced by both social and individual values towards disability. Therefore, importantly, a single medical or individual model of disability could not cover the entire understanding of their lives. An understanding of their lives from their lived experiences would more readily approach the complex influence brought about by a physical impairment in their lives.
Hermeneutic phenomenology consists of both descriptive and interpretive elements (Van der Zalm & Bergum, 2000). Phenomenology describes the lived experiences of human beings and hermeneutics describes their interpretations of the ‘text of life’ (van Manen, as cited in Walters, 1995a). Hermeneutic inquiry
77 moves beyond description to achieve a richer and more complex understanding of the meaning embedded in daily living.
The primary objective of hermeneutic phenomenology is to develop an understanding of the essence of the meaning of everyday experiences in the world (van Manen, 1997). van Manen (1997) suggests that “what is this or that kind of experience like?” (p. 9) is a particular inquiry form of hermeneutic phenomenology research. The practice of phenomenological reflection and narratives is used to understand the various types of life (van Manen, 1983). Human experience is disclosed by using interpretive phenomenology to give people an opportunity to have their say (Jardine, as cited in Van der Zalm & Bergum, 2000).
Heideggerian hermeneutic phenomenology therefore was selected because of its recognition of the value of exploring everyday experiences. Through exploration, it is possible for others to interpret the meaning embedded in these descriptions. Using interpretive phenomenology as the theoretical perspective of this study made it possible to describe, interpret and present understanding of the participants’ lives in Taiwan.
In addition, this theoretical perspective “increases sensitivity to humans’ ways of being-in-the-world” (Crist & Tanner, 2003), which enabled this study to reveal the absorbing nature of the activity in participants’ everyday lives. Participants were considered to have expert knowledge in their lives with an impairment. However, many people with an impairment might not be aware of the social origin of their oppression, such as Taiwanese with a physical impairment who were the target group in the study (Oliver, 2009). Hence, this paper also provided an opportunity for people with a physical impairment in Taiwan to raise awareness of their being-in-the-world related to the social nature of disability. Through the dynamic interactions between me and the study participants with shared Taiwanese backgrounds, the descriptions and interpretations of their lives with a physical impairment would more readily be reconstructed (Plager, 1994).
Plager (1994) refers to the assumptions of hermeneutic phenomenology as the following:
1. Human beings are social, dialogical beings. 2. Understanding is always before us in the shared background practices; it is in the human community of societies and cultures, in the language, in our skills and activities, and in our intersubjective and common meanings. 3. We are always already in a hermeneutic circle of understanding.
78 4. Interpretation presupposes a shared understanding and therefore has a three-fold forestructure of understanding. 5. Interpretation involves the interpreter and the interpreted in a dialogical relationship. (Heidegger, 1927/1962; Taylor, 1987, 1991; Ten Have & Kimsma, 1990, p.71)
These assumptions from interpretive phenomenology formed the theoretical base of this study, and also underpinned the following four basic philosophical issues: “the relationship of interpretation and understanding”, “the forestructure of understanding”, “the hermeneutic circle” and “the modes of involvement” (Plager, 1994, p. 71). These assumptions and theoretical perspectives placed me in the position of an interpretive investigator, and the study participants in their everyday engagement and self-interpretative positions (Plager, 1994). These four basic philosophical issues are now addressed in detail:
1) The relationship of interpretation and understanding
When there is an understanding of shared background familiarity, the living context becomes more intelligible for people, permitting an interpretation to be made. Heidegger (cited in Plager, 1994, p. 71) explains this as: “this thing in question already has an involvement that is disclosed in our understanding of the world, and this involvement is one that gets laid out by the interpretation”.
In this study, I and the participants had the same Taiwanese cultural background and communication was straightforward. Through exploring shared understanding, perceptions and experiences of living a life with a physical impairment, appropriate interpretations could more readily be mutually constructed.
2) Forestructure of understanding
Human beings build interpretations on the forestructure of understanding (Plager, 1994), what Heidegger refers to as “that which [is] taken for granted” (as cited in Plager, 1994, p.72).
Plager (1994) explains that this involves three elements:
1. A fore-having: we come to a situation with a practical familiarity, that is, with background practices from our world that make an interpretation possible.
79 2. A fore-sight: because of our background we have a point of view from which we make an interpretation. 3. A fore-conception: because of our background we have some expectations of what we might anticipate in an interpretation. (p. 72)
In this study, the forestructure of understanding living a life with a physical impairment could be seen as a process from a fore-having to fore-conception understanding to lead me and participants from taking the shared background for granted to concrete interpretation.
3) The hermeneutic circle
The hermeneutic circle is a process that leads to interpretation and from there to understanding. This means that a researcher starts with forestructure of understanding formulating questions that derive from this stance to use to further examine the data (the descriptions of the experiences). As a researcher I had to be open to new possibilities of knowledge, known as interpretations deriving from the experiences of others. The movement between forestructure and the experiences continues until interpretations and new understandings are formed.
For Heidegger, human beings are always in the hermeneutic circle (Draucker, 1999; Leonard, 1994; Plager, 1994). Plager (1994) finds that “our world is always already meaningful and intelligible, and our activities are constituted by and make sense in the world” (p. 72). Understanding makes people engage with their lives as in many actions without thinking. People engage in meaningful actions according to what matters to them and what they care about. As Plager (1994) highlights, humans are “involved with something as something” (p. 72). Interpretation emanates from understanding and enables people to recognize “something as something” (Plager, 1994, p. 72). Rice and Ezzy (1999b) refer to the hermeneutic circle as “self-stories” in one’s life. For their explanation, “new events shape new self-stories and new self-stories lead to new actions and events. Life is an ongoing cycle of actions and constructing and reconstructing self-stories” (p. 26).
In the present study, I and participants were considered to share an everyday practical understanding by virtue of our similar cultural and linguistic background (Leonard, 1994). We all entered the hermeneutic cycle of understanding living a life with a physical impairment in the community, and the interpretation was a circular process until the depth of understanding of the study was achieved (Crist & Tanner, 2003; Leonard, 1994). Moreover, through the hermeneutic circle, I was able to build a bridge across the divide between people with and without
80 impairments. In effect, this study was aimed not merely at understanding the lives of people with a physical impairment, but also at extending a hand to the physically impaired participants, which Fontana and Frey (2005) referred to as to “grasp and pull the downtrodden out of the mire in which they are suffocating” (p. 715). Therefore, the findings of this study provide the vehicle to understand what it is like to have a physical impairment in Taiwan, and in turn, through raised awareness, there is the potential that things could change in the future through enhanced understandings.
4) Modes of involvement (engagement):
Three interrelated ways of engagement with equipment or practical activity that we have in daily life are introduced by Heidegger (as cited in Plager, 1994). Research activities are situated within these (Plager, 1994). These are now discussed:
i) The ready-to-hand mode:
Plager (1994) finds that in this mode of engagement practical activities work “smoothly and transparently”; people are “involved in an absorbed manner so that the equipment is for the most part unnoticed” (p. 73). It uncovers the most original and direct way of approaching human phenomena (Packer, as cited in Plager, 1994).
ii) The unready-to-hand mode:
In this type of engagement, Plager (1994) suggests that “some sort of breakdown occurs in the smooth functioning of equipment or activities” (p. 73). The difficulty is experienced as part of the situation because it is conspicuous to the person and becomes problematic (Plager, 1994; Walters, 1995b).
iii) The present-to-hand mode:
Walters (1995b) refers to the present-to-hand reflection as “detached and objective analysis” (p. 798). Packer, as quoted in Walters (1995b), suggests that it involves “the everyday activities of life being analysed in a way that isolates the experiences from the ‘person concrete circumstances and from the culture in which that person lives’” (p. 798). Here, the Cartesian type of inquiry occurs in this mode of engagement (Plager, 1994).
The inquiry of this research emphasized the subjective or personal understanding of living a life with a physical impairment which seven Taiwanese adults with a
81 physical impairment had individually experienced and perceived. As such, their “impairment” characteristics were either unnoticed or noticed by the study participants. In this study, therefore, their engagement of a physical impairment was mainly in the ready-to-hand and unready-to-hand modes of involvement, rather than the detached present-to-hand one.
3.3.1.3 The involvement of the researcher and participants in interpretation
The contribution of the Heideggerian perspective to the involvement of researchers is that they and their viewpoints will be an essential part of the research development. In the study, the concept of being-in-the-world led me to reasonably bring my preconceptions, beliefs, past experiences, and understanding to the research (Draucker, 1999; Plager, 1994; Walters, 1995b). The notion of ‘bracketing’ or detached attitude of the researcher, as espoused by Husserl, is not possible in Heideggerian hermeneutic phenomenology (Draucker, 1999; Walters, 1995b). Instead, the shared and intersubjective experiences between the researcher and study participants are essential in the interpretation process; it is only then that the basic dimensions of being-in-the-world phenomena can be understood (Walters, 1995b). In fact, Walters (as cited in Draucker, 1999) points out that “the researcher is an active participant in the interpretive process rather than a passive recipient of knowledge” (p. 361). In this study, I and the participants developed a collaborative partnership throughout the interview process. This partnership positioned me as an active and curious learner of participants’ lived experiences of living a life with a physical impairment; also, it directed participants to have their say and be recognized (Draucker, 1999; Rubin & Rubin, 2005). For further details of collaborative partnership, please refer to section 4.1.2.2.
82 3.4 Constructivist grounded theory as the methodology
Methodology is an “entire research process” (Creswell, 1998, p. 77). It is the research approach that constructs a plan and guides actions that forms the logic of inquiry. Methods or strategies are used to reflect the methodology and this leads more readily to the desired outcomes (Blaikie, 2000; Creswell, 1998; Crotty, 2003). In this study, I employed Kathy Charmaz’ (2003, 2006, 2008) constructivist grounded theory as the means to interpret the collected data,beginning inductively and returning to the data deductively to construct a unique understanding of living a life with a physical impairment from the study participants themselves. The philosophical assumptions of this grounded theory approach and its relation to this study are addressed below:
Charmaz (2003, 2006, 2008) explicated different forms of grounded theory, which are objectivist and constructivist grounded theory. According to her (2006), “constructivist grounded theory is part of the interpretive tradition and objectivist grounded theory derives from positivism” (p. 130). Objectivist grounded theorists such as Glaser, Strauss and Corbin suggest that researchers should keep distance from their study participants and data, awaiting discovery (Charmaz, 2006, 2008). In contrast, constructivist grounded theorists assume that the researchers do not and cannot stand away from their preconceptions. Instead, the researchers and their participants co-construct meanings from listening to their participants’ feelings and experiences via dialectal processes and then the researchers render these collected empirical realties (Charmaz, 2003, 2006, 2008). Hence, constructivist grounded theory is more appropriate to interpretive social science (Charmaz, 2003) and “emphasizes the studied phenomenon rather than the methods of studying it” (Charmaz, 2008, p. 206).
The rationale of the constructivist grounded theory is compatible with constructionism adopted as the epistemological stance in this study because both emphasize how meaningful realities are constructed rather than discovered. Thus, via our in-depth discussion on what living a life with a physical impairment was, study participants and I constructed the meaningful realities that they shared with me - their lived experiences - and then how I understood them. Furthermore, the constructivist grounded theory as the methodology and Heideggerian hermeneutic phenomenology both allocate the researchers staying in the context without discarding their presuppositions. This assumption could clearly guide me on how to interpret study participants’ lived experiences of living a life with a physical
83 impairment in Taiwan because I could be more reflexive to the differences between me and them. Also, from my own experiences of studying their lived experiences, I found I could not pretend to be detached as if I were just an external observer without personal emotions involving the analytic process. Actually, the participants and I constructed our being-in-the-world together, and I presented their stories of living a life with a physical impairment in this study.
In short, I found constructionism as the epistemology, Heideggerian hermeneutic phenomenology as the theoretical perspective and constructivist grounded theory as the methodology in this study were coherent and each connected well with the others to guide my exploration of study participants’ lived experiences of living their lives with a physical impairment.
Summary
This chapter has discussed the rationale for the adopted research conceptual framework for understanding how people with a physical impairment live their lives in Taiwan. It includes constructionism as the epistemological stance for understanding how participants constructed the reality of their lives in Taiwan; Heideggerian interpretive phenomenology as the theoretical perspective for understanding participants’ lived experiences and perspectives on their lives with the impairment, and constructivist grounded theory as the methodology for building a theory based on their expert knowledge in their lives with the impairment (see Table 2).
The selected methods and how the study was practically conducted for understanding participants’ lives with a physical impairment in Taiwan are discussed in the next chapter.
84 CHAPTER 4 METHODS
This chapter describes the methods I adopted and explains why I adopted them in order to achieve the study purpose of understanding how participants lived their lives with a physical impairment in Taiwan. The structure of this method chapter is organized as four sections:
The first section of this chapter (4.1) takes account of the pilot study and my learning from it. Then, the second section (4.2) includes an explanation of what methods were selected to achieve this research purpose and how I applied these methods in conducting the study. Following that, I detail how the data analysis was performed (4.3). Finally, I discuss how the rigour of this study was maintained (4.4).
4.1 Pilot study
Before I conducted the study, I completed a pilot study to trial the research design and methods to ensure that I was appropriately implementing the principles guiding this research for understanding how Taiwanese people with a physical impairment lived their lives7. This section is about how I conducted the pilot study and what I learned from it.
4.1.1 Recruitment of pilot study participants and in-depth interviewing
In the pilot study, I sought the assistance of one of my professional contacts in Taiwan to assist in the participant invitation process. This professional contact was asked to issue invitations to potential pilot study participants with a physical impairment but who were not associated with the In-House Evaluation Project8 (see Appendix 2. Letter to the professional contacts). Two physically impaired people living in Yunlin and Tainan County were successfully recruited and they agreed to sign the informed consent form at the time of interview (see Appendix 6. consent form).
7 The study was approved by QUT’s Research Ethics Committee and its approval number was 4302H. Please see Appendix 1. for a copy of the ethics approval letter.
8 The In-House Evaluation Project was a project of the Ministry of the Interior in Taiwan, and aimed to help lower and medium income individuals with a severe impairment overcome their dysfunction and enhance their self-managed living ability. Part of my study interests was how this project service users’ views on community services such as this one were. However, for the purpose of the trial of research design, I did not want to recruit potential pilot study participants who were involved in this project. But after I proposed the ethical amendment to expand the pool of participants beyond this project, 7 participants in total had the same criteria. They were all Taiwanese with a physical impairment living in the community setting.
85 After receiving their consent, individual in-depth interviews were conducted over three to four visits at their homes. Also, an interview guide and a feedback form were designed to test the suitability of the interviewing questions and to give suggestions on the research design respectively (please refer to Appendix 7 and 8 for the interview guide and feedback form for the pilot study). Each interview session took about two hours. With their agreement, the interviews were taped.
4.1.2 Researcher’s reflections and learning from pilot study
The role of pilot study participants was to provide feedback on issues such as the interview procedures, timing issues, consent forms and interpersonal processes. Their feedback along with my reflections enabled the fine-tuning of the research design and ensured the study was sensitive to the views of people with a physical impairment in Taiwan.
My reflections and learning from the pilot study participants are addressed now:
4.1.2.1 Timing issues
In considering how to arrange interviewing time with study participants, five issues emerged from the pilot study and needed to be kept in mind. First, the interview process raised some sensitive issues for the pilot study participants; hence, they needed time to think over their decision to be involved in this study. This was respected and time was given and again, participants were reminded that participation was voluntary. Second, because both pilot study participants had a regular job and lived in different counties, I had to consider the timing arrangement regarding conducting the interviews. Third, it took time to become better acquainted with pilot study participants before commencing the interview sessions. Fourth, one of the pilot study participants raised the issue of the need for time to reflect on the interview questions; she asked me to give her more time to reflect on the topics she could not answer at the time of interviewing but would talk about more in the next interview session. Finally, during one of the interview sessions, one pilot study participant mentioned that people with an impairment such as her might need to cancel or put off the interview with me if illness or other unexpected events occurred.
These issues mentioned above highlighted the need for flexible timing requirements for the interviewing process in this study. Therefore, when conducting the study, I needed to set a more flexible timeline to accommodate the unexpected things that might occur in the interviewing period. For example, I
86 needed to give more time for the participants to think about whether they would participate, so I made contact with the assisting organizations around one to two months in advance of the time of conducting the study. In addition, after receiving the agreement of participants taking part in the study, I needed to understand and accommodate the lifestyle of participants in setting times for interview sessions and in making acquaintance of both parties. Thus, in the remainder of study, I arranged one interview session each week. Then, I and participants had more time to reflect on the discussed interview topics, and sent feedback to each other. Also, I double-checked with participants before each interview session so that participants could tell me whether the interview session could be undertaken on time.
4.1.2.2 Interview procedures
In considering the suitability of interview procedures in the pilot study, three issues emerged. First, both pilot study participants agreed that the questions in the interview guide in its initial form were for the most part easy to understand and allowed them an opportunity for deeper exploration of their lives with an impairment (see Appendix 7. interview guide for pilot study). However, there was some terminology they could not understand and some important issues came up in the interview sessions which were not covered in the topics in the initial interview guide. For example, as far as the political aspect was concerned, both participants indicated they thought most people with an impairment in Taiwan would not understand the term “Protection Act”. They suggested it would be better to use the other term “disability legislation” to replace it. Also, they raised the issue of inclusiveness of people with an impairment in Taiwan in the interviews, which was not included in the initial interview guide. Hence, the use of less jargonistic language in interview questions and the addition of more topics for discussion were incorporated into the revised interview guide (see Appendix 16.).
Second, both pilot study participants reflected on how the interviewing was helpful to them. They agreed that it provided them with an opportunity to have their say and empowered them to clarify what they did not want to think about or had never considered before.
4.1.2.3 Interpersonal processes
Because their anonymity and the confidentiality of their information were guaranteed, both participants indicated that they felt safe and comfortable with the interview process. Moreover, they were encouraged to choose what they wanted to
87 talk about and were invited to suggest topics in which they were interested. Hence, this allowed the natural flow of the interview and the interview process to take place in a relaxed and informal way, and in a way in which they felt they had control (Rubin & Rubin, 2005). In a word, the above was helpful in building a collaborative relationship between pilot study participants and me as the researcher. This relationship was useful to achieve the aim of this study to co-construct a grounded theory of understanding participants’ lives with a physical impairment.
4.1.2.4 New ethics consideration
When conducting the pilot study, two ethical issues emerged and needed to be considered before further data collection. The first issue was about the need to expand the pool of study participants to avoid participants being recognised locally. The second issue was whether to incorporate pilot study participants in the study. The reasons for these two ethical issues are addressed below.
- The expansion of the pool of participants beyond the In-House Evaluation Project
The criteria of potential study participants were envisaged as adults with a physical disability living in a range of community-based settings in the Yunlin or Tainan County in Taiwan, and who were involved in the In-House Evaluation Project9.
While I conducted the pilot study, I also sought the assistance of two disability organizations in either Yunlin or Taiwan County to help in the recruitment of study participants, the sensitivity of the funding issue associated with the In-House Evaluation Project became apparent. Because I would conduct in-depth interviews with study participants, the interviewing information would then form the research findings, which might include the In-House Evaluation Project participants’ perspectives on the quality of the service. There were concerns that negative comments may affect the funding of the In-House Evaluation Project to those two organizations. It was believed that the Taiwanese government might be able to locate the research findings of the In-House Evaluation Project when this study is published. Hence, the concern was that these organizations might selectively invite those participants who would do no harm to their government subsidies and this may not provide sufficient richness in the data to facilitate understanding of
9 Because I had related work experience with the In-House Evaluation Project, I was interested in the service users’ views on it and wanted to invite them to participate in the study. However, after my discussions held with these assisting disability organisations, I decided to expand the pool of participants beyond this project. The rationale for this change is further explained in this section 4.1.2.4.
88 experiences of living with a physical impairment in Taiwan. As a result, the sensitive issue of the In-House Evaluation funding to the two organizations needed to be considered by me.
Additionally, the small numbers of people in the In-House Evaluation Project and their particular characteristics, such as people with a severe impairment, having medium or low income, and living in Tainan or Yunlin County would make them very easily identifiable despite all efforts to protect their identity.
Thus, in consideration of these two factors mentioned above, it was proposed to amend the criteria of study participants to the following “adults with a physical disability living in a range of community-based settings in the Yunlin or Tainan County in Taiwan”. The organizations which were asked to assist in the participant invitation process remained unchanged.
The proposed amendment of recruitment criteria of study participants was conducive to reducing the sensitivity of the funding issue for the two organizations and to preventing participants from being easily identified. I proposed the minor changes to the recruitment criteria of study participants to QUT’s Research Ethics Committee. Following approval of Ethics Committee for these proposed changes, the assistance of the organizations was sought to invite participants meeting these revised criteria.
- Incorporation of pilot study participants in the study
Second, from the reflection on the pilot study, the two pilot study participants provided significant information for the deeper understanding of how physically impaired people lived their lives in Taiwan. Several central themes were raised in the preliminary analysis of pilot study interview transcripts from two pilot participants. For example, themes of “experts in the understanding of disability” and “social relationships” were found in the preliminary data analysis of the pilot study and were orally presented and published in two conferences.
Charmaz (2006) suggests that “we build levels of abstraction directly from the data and, subsequently, gather additional data to check and refine our emerging analytic categories” (pp. 3-4). With Charmaz’s words in mind, and through reflection on the pilot study, I found the data from the pilot study could be used as the basis for the study. Thus, it was decided that the pilot study findings were useful to incorporate into the study’s findings to gain an understanding of living a
89 life with a physical impairment from pilot participants’ views and lived experiences, and in turn to develop theory with a grounded theory approach.
Therefore, I formally proposed the inclusion of pilot study participants into the study to QUT’s Research Ethics Committee. With its approval, I sought the consent from the two pilot study participants to be included in the study (see Appendix 9. agreement to use information from the pilot study in the study).
90 4.2 The study
Following the incorporation of feedback from the pilot study and two pilot study participants, the study was further conducted with five Taiwanese with a physical impairment. Hence, there were seven study participants in total. These people were Pearl, Joyce, Hilda, Venice, Judy, Yugo and Mary. For full description of their background information, readers can refer to the Introduction. Moreover, for further details of the pilot study, readers can refer to the previous section 4.1. In the following section, I focus on the description of how I conducted the study.
4.2.1 Recruitment
The first issue of conducting the study was how to recruit potential participants. This section is about how I used purposive sampling to recruit them, and what difficulties I encountered during the recruitment process.
4.2.1.1 Purposive sampling used to recruit study participants
Purposive sampling is one of the non-probability sampling strategies used in qualitative research, and as implied in the term, chooses cases with a specific purpose (Neuman, 2004a). Neuman (2004a) suggests that researchers might adopt purposive sampling legitimately when they want to locate particular types of people for in-depth investigation; the purpose is to seek a deeper understanding of a specific field of study which participants are able to provide, rather than to represent a larger population. In this study, a significant aim was to explore living a life with a physical impairment in the community in Taiwan. Taiwanese adults with a physical impairment who lived in the community were considered to have the expert knowledge of the disability field under investigation, and thus would be helpful in creating a deeper understanding of their lives in Taiwan. In line with the research purpose, purposive sampling was used to locate and recruit potential participants in Taiwan.
Using purposive sampling to recruit people who had the lived experiences of living a life with a physical impairment, adults with a physical impairment living in a range of community-based settings in the Yunlin or Tainan County in Taiwan were invited to participate in the study. Participants were recruited from two non-government disabled welfare organizations, located in Tainan and Yunlin County in Taiwan respectively. These organizations were asked to assist in the participant recruitment process, and I needed their agreement to carry out the invitation procedure. (see Appendix 10. request for local organisational assistance
91 in the invitation procedure and Appendix 11. approval form by the assisting disabled welfare organizations).
Because potential participants might have poor literacy skills, the participant invitation information was presented in a format suitable to these persons. Thus a variety of invitation and information formats was envisaged. A Plain Chinese format and an audio-taped version were also prepared. An audio-taped version was prepared for potential participants with poor literacy skills and a Plain Chinese version for those with adequate literacy skills. English translations of these formats were approved by QUT’s Research Ethics Committee (see Appendix 12. invitation to potential participants and Appendix 13. information sheet).
Knowledge of the above organizational staff was used to advise on formats suitable to the particular potential participants. Interested participants were then to be invited to contact me directly by return mail, e-mail, or phone call (see Appendix 14. acceptance form).
4.2.1.2 Researcher’s dilemma on issuing invitations
Originally, the two disability organizations were organised to provide assistance with issuing invitations to potential participants with no further involvement in the participant invitation process or in any other aspect of the conduct of the study. Interested participants were then to be invited to contact me directly by return mail, e-mail, or phone call (see Appendix 14. acceptance form). However, during the invitation process, the staff in the two organizations requested that this recruitment process change and that I make contact with the potential participants in their presence. What the staff did was a cultural norm in Taiwan for service providers to introduce other professionals to their service users, and thus people like researchers would be more readily accepted by service users. However, the ethical issue was that the recruiting site (the organizations) should not take part in the recruitment process in order to prevent participants being identified. I faced an ethical dilemma at that time, as I did not expect this to happen. However, I decided to accept the cultural norm of being introduced by the disability organization staff to potential participants because I could sense these people did not feel hurt, judging by their facial expressions. Instead, I explained what I proposed to do in a formal and ethical way, which included how I would prevent them from being identified by the assisting organizations if they decided to be involved in the study. They expressed feeling respected and surprised because they had never had such an experience before. Therefore, this type of invitation became more appropriate
92 than the previously planned strategy as it appeared to be acceptable to the study participants. Because the organization staff had good relationships with the potential participants, I was more readily accepted and trusted by them. Thus, the cooperative relationship between the two parties could be built efficiently. At no point was detail of who was participating in this research study shared with any of the staff involved in the two disability organizations who introduced me to those that matched the selection criteria.
Other strategies used to prevent participants from being identified, included de-identifying participants and their recruitment locations and expanding the recruitment pool of participants beyond the In-House Evaluation Project (to understand the rationale for doing this, please refer to section 4.1.2.4). Thus, these participants had no direct conflicts of interest with the two disability organizations. In addition, the findings do not mention any distinctive or identifying demographics or characteristics of any study participant and assisting organizations. Participants were given pseudonyms and an age range instead of telling people their actual age in the transcribing of the data and in reporting of the findings; additionally, their lifestyle details were not mentioned in the transcribing of the data and in reporting of the findings. Information about organizations was only to be presented in a general, non-specific manner to avoid identification.
This experience of issuing invitations via assisting organizations in Taiwan can be an example to other researchers conducting studies overseas. It indicates that some unexpected situations might arise. This would require a new ethical risk assessment with new strategies. Researchers should locate the ethical considerations within their study context to address ethical risks appropriately whilst adhering to ethical principles.
4.2.2 In-depth interview as means of data collection
4.2.2.1 In-depth interview
The in-depth interview, as Minichiello, Aroni, Timewell, and Alexander (1995) argue, is a type of conversation aimed at gathering or eliciting information from the interviewee or interviewees. Holstein and Gubrium (2004) describe such an interview as “an interpersonal drama with a developing plot” (p. 154). Therefore, two-way interaction between the interviewer and interviewee constitutes the interview process, and then meaning is constructed by both parties (Hesse-Biber & Leavy, 2006; Holstein & Gubrium, 2004).
93 An in-depth interview has a particular dimension aimed at gaining a deep understanding of social realities via verbal interchange (Minichiello, Aroni, Timewell, & Alexander, 1995). Researchers use in-depth interviews to explore what and how people or participants think, and then to try to understand them as deeply as possible or to gain a rich understanding of these people’s own understandings and interpretations of their everyday life experiences, their perceptions of these experiences and the values underpinning them (Holstein & Gubrium, 2004; Johnson, 2001). Interviewees are considered as having unique knowledge about their social world, and through in-depth interviewing, researchers are able to access it (Hesse-Biber & Leavy, 2006). In addition, Hesse-Biber and Leavy (2006) point out that “in-depth interviews are also very useful for accessing subjugated voices and getting at subjugated knowledge” (p. 123). People with disabilities in general have encountered more oppressive and marginalized situations than people without disabilities (Swain et al., 2003; Wang, 2002). As the objective of this study was to explore how people with a physical impairment lived their lives in Taiwan, in-depth interviews provided me with an effective means of unfolding the hidden or excluded knowledge held by these people and to provide a forum for their voices to be heard and for their knowledge to be valued (Hesse-Biber & Leavy, 2006; Knox et al., 2000).
According to constructionism, the epistemological stance adopted in this study, meaning is mutually constructed by interviewers and interviewees (Silverman, 2001). Interpretive constructionists use in-depth interviews to elicit the informants’ perspectives of their social world, of a specific event or cultural issue and usually pay attention to the shared meanings held by a particular group (Rubin & Rubin, 2005). Interpretive constructionists try to recognize the interpretive accounts shared by participants and synthesize understandings by two-way communication (Rubin & Rubin, 2005). This encapsulates the essential elements of the assumptions underlying the interpretive paradigm used as the theoretical perspective in this study (Minichiello et al., 1995). Moreover, Minichiello et al. (1995) state that “all forms of in-depth interviewing are not predominantly used as hypothesis-testing modes of research but as theory-building ones” (p. 75). Therefore, employing in-depth interviews as a research method was conducive to gaining an understanding of the field of study, namely, a richer understanding of physically impaired people’s lives in Taiwan in this study, and for developing theories rather than testing them.
Using in-depth interview as a means of data collection meant that participants were viewed as possessing fruitful and unique knowledge in the understanding of
94 disability in the Taiwanese context. Through in-depth interviewing, an interpretation of the experiences and perceptions of these people engaging with their living cultural context was mutually constructed by me and participants (Silverman, 2001). Furthermore, the co-constructed meaning was grounded in theory building. The above rationale of using in-depth interviews as means of gathering data was also compatible with the adopted methodology—constructivist grounded theory.
Therefore, in-depth interview was selected as the method to collect data from study participants in this study. Before interviewing them, an interview guide for the study was developed to give an orientation to the interview topics (see Appendix 16.). Those people choosing to participate were asked to sign the informed consent form at the time of interview (see Appendix 15. consent form). After obtaining each participant’s consent, the in-depth interview process was taken over three visits. I interviewed each participant once a week as long as it could match their schedule and I also wanted to leave enough time for them to think about what having a physical impairment meant to them. The interviews lasted from one and half hours to three hours and were held at participants’ homes as agreed to by both me and them. This more readily ensured the participants’ comfort and control of the interview process. With their agreement, the interview information was taped.
4.2.2.2 Collaborative partnership between me and study participants
Hesse-Biber and Leavy (2006) state that “the relationship between the interviewer and respondent is critical to the process of constructing meaning” (p. 128). While conducting the study, questions arose regarding the appropriate relationship between me and study participants, and how the relationship (rapport) was established and maintained. These issues are now addressed.
Rubin and Rubin (2005) term informants or interviewees “conversational partners”. As the phrase suggests, such a partnership emphasizes the active and egalitarian roles, and the cooperative process of both the researcher and study participants (Holstein & Gubrium, 2004; Minichiello et al., 1995; Rubin & Rubin, 2005). Furthermore, Charmaz (2006) points out that “human beings are unlikely to relish being treated as objects from which you extract data. Reciprocities are important, and listening and being there are among them” (p. 110). Hence, in the study, it was considered critical to develop the collaborative relationship as an integral aspect of
95 the interviewing process. This partnership directed the interpretation of study participants’ telling of their lives with a physical impairment, co-constituted by both parties (Draucker, 1999; Rubin & Rubin, 2005).
Thus, I valued and respected people with an impairment who were the same as everyone despite their impairment, and were considered as experts in their understanding of disability. I positioned myself as a learner who would empathetically seek, with them, to understand and interpret their experiences and perspectives of their lives.
There were other advantages of the “partnership” between me and study participants. It reminded me that the study participants were “research partners” so that the natural flow of the interview was more easily elicited and then directed by both parties’ concerns. This assisted me in ‘unsilencing’ the silenced voices and garnering a deeper understanding of issues of concern to the participants (Knox & Hickson, 2001; Knox et al., 2000; Rubin & Rubin, 2005). Moreover, the term also implied the uniqueness of each participant, their distinct expertise or characteristics, and the diverse ways in which the individual interacted with me (Knox et al., 2000; Rubin & Rubin, 2005). Hence, a semi-structured interview was adopted because it allowed the flexibility to accommodate the variations among different participants and to capture the ensuing themes that would emerge during the ongoing research process.
In order to build a mutual sense of partnership and trust, I and participants had some form of reciprocity and shared authority (Charmaz, 2006; Hesse-Biber & Leavy, 2006; Johnson, 2001). After obtaining study participants’ consent, I prepared a gift to thank them for their participation. Also, I respected their decisions and actions about this study. This meant they could control their participation so they could decide whether they wanted to remain involved in this study, whether they wanted to answer questions, and they could ask me questions. Integrity and honesty also were maintained throughout the course of this research. Hence, before conducting the in-depth interviews, I went through the information package with study participants to clarify what their involvement entailed. All the information provided by them was kept anonymous and confidential, and stored in a locked filing cabinet. I also informed them I might hire a transcribing assistant to help me with transcribing the tapes, but required the person to sign the confidentiality agreement. This involved me being honest with my study participants, and the university but not breaching the code of confidentiality.
96 Each party had to feel comfortable and safe with the other party (Hesse-Biber & Leavy, 2006). Hence, at the beginning of an interview, I prepared drinks and biscuits for study participants and did not hurry to get on to research related information, but allowed study participants to talk about any topics which they wished to share with me instead. For example, one of the participants, Mary, working in a bus station, talked about her job first, such as whether the buses arrived on time, and how many passengers got on. We had juice together and talked about the bus topic first. I hoped that by doing so participants would feel relaxed about their participation in this study and it did help me to feel more prepared for the interviews. Also, I started out the interview with some more general questions so that participants did not feel threatened, such as asking how they were going or what they thought about my interviews. To summarize, in order to ensure the natural flow of the in-depth interviewing, I let participants talk about what they wanted to first and then I suggested a list of discussion topics in the form of an interview guide, but also left room for participants to choose what they wanted to talk about or invited them to develop topics in which they were interested (Holstein & Gubrium, 2004).
Furthermore, in order to facilitate the partnership development between me and the study participants, I needed to actively listen to what participants said, empathetically to understand how they felt, and to avoid personal criticism of the content (Hesse-Biber & Leavy, 2006; Knox et al., 2000). People with a physical impairment were seen as experts regarding their own experiences and perceptions, and were encouraged to be actively involved in the interview sessions while my role was one of facilitation (Hesse-Biber & Leavy, 2006; Knox et al., 2000). Hesse-Biber and Leavy (2006) suggest some strategies for the establishment of rapport which were also applied in the study: I showed real interest in the stories which study participants were sharing. Eye contact, appropriate gesturing and picking up markers were important to let study participants feel I was paying attention to, or was interested in, what they were saying. For example, I remembered Hilda was worried about her son who was in jail. Therefore, when I went to her place, I would ask how her son was going and listen to what she told me. This interest helped me to enter the participants’ daily lives and understand them. Thus, the relationship between me and the participants was quickly built leading to meaningful interactions in the in-depth interviews.
97 4.2.2.3 Reflexivity
I was constantly mindful that I and study participants were different individuals. As such we had different attitudes, values, beliefs, gender, class or backgrounds. Hesse-Biber and Leavy (2006) find that “the issues of difference impact all phases of the research process” (p. 132) because the set of characteristics would inevitably influence the process of meaning construction. Researchers can employ the process of reflexivity as a means of helping them to work out such differences (Hesse-Biber & Leavy, 2006). According to Hesse-Biber and Leavy (2006), reflexivity means “the process through which a researcher recognizes, examines, and understands how his or her own social background and assumptions can intervene in the research process” (p. 141). In the study, I used memo writing continuously to examine my differences with study participants, and what struck me in the interview process and in the data analysis process. For example, when I heard that Pearl did not think service providers understand people with an impairment such as her at all, I was so surprised because her word challenged me as an occupational therapist. Hence, I did not have any response to this topic at the time of interview. Therefore, after the interview session, I employed memo writing immediately to reflect on Pearl’s strong and negative feeling towards service providers, and thought about what I should do with this. I remembered I jotted down as “Pearl got hurt not only from her impairment but also from how others treated her as an impaired person. This was no exception to medical staff. How shameful on these professionals, and how sad Pearl was!” Then, in the next interview session, I asked her about her lived experience of this. When I did further analysis, the theme “professionalism” emerged. Thus, “reflexivity” enabled me to identify differences between my own and participants’ perceptions of things, and to let me more readily realize the experiences and perceptions held by study participants, rather than imposing my own views of such experiences.
On the other hand, due to the long-term adaptation of disability experience, impaired people can be highly reflective research participants anyway (Morse, 2001). By using multiple interviews, the study participants could also have the opportunity to reflect on their own experiences and perspectives on disability. So, the study participants were empowered to reflect on their own understanding of disability in this research process. For example, because of the social model of disability Joyce heard from me, she found having an impairment was not her fault but the responsibility of society to take care of her. This idea pushed her to fight for the rights for people with an impairment. She said excitedly:
98 I haven’t thought that disability can have such an explanation,…it can be explained as social or environmental factors that make us disabled.….if more and more people with a disability know that, there might be riots or demonstrations! That is disabled people will stand up to demand their rights!
4.2.2.4 Member checking
Member checking was used to assist the credibility of the findings and to ensure that the emerging theory would be constructed with my complete understanding of participants’ telling of their lived experiences of living a life with a physical impairment (Cobb & Forbes, 2002). Furthermore, member checking enabled their active participation in the analysis of the information and to develop the credibility and trustworthiness of the interpretation of the interview data (Cobb & Forbes, 2002; Hatton, 2004).
For the study, the member checking process was undertaken by me with study participants following each interviewing session to see whether my understanding of their information in the previous interview session was correct. Member checking was also used in the later analytic stages of the study to assist with theoretical sampling and with theorizing the interview data (also see 4.2.3 Analysing by using grounded theory approach). For example, when I first heard Venice talking about his understanding of his mind, it was nearly the end of the first interview session, so we did not have much time to talk about this. In the next interview, I asked him what “mind” meant to him, and he was eager to explain this to me. In the third interview, I told him my understanding of what his mind was and wanted to make sure if this was right. Finally, because of Venice’s concern about his mind, he was defined as ‘a mind man’ in this study (for further details of Venice’s story, please refer to chapter 8).
99 4.3 Analysis
The previous two sections provide more detail about collecting and analysing the pilot study data prior to the decision to incorporate it into the larger study. The final data collection techniques determined during the pilot study were implemented for the rest of the participants in the study. The next section is concerned with how I analysed the study’s collected data from the total participant group of seven participants who shared their experiences of living with a physical disability in Taiwan.
All interviews were transcribed. All transcriptions were then translated into English. A description of the procedures used to ensure accurate translations are described below. After that, I applied the grounded theory approach to code data, to write memos, and to theorize data. The processing of my analysis is now detailed below.
4.3.1 Transcribing and translation
Because all study participants were Taiwanese, they spoke either Mandarin or Taiwanese. Therefore, the taped interview information was transcribed into Chinese and then translated into English for further analysis.
In the pilot study, I did the transcribing work by myself and sought a translator to assist with the translation of the transcribed information. However, due to the size of the transcriptions and for accuracy of translation it was decided that translators who were skilled at both languages would be used. I trialled several translators to check the quality of their translation after I gave them a translated interview into Chinese. However, I found that these translators could not get an accurate translation of much of the interview information because they had no access to the original interview tapes. Therefore, their translation of the interview information risked being distorted and of not capturing the full meanings of the interview participants. Thus, from my reflection on this issue, in order to retain the quality and richness of the study interview material, I wished to hire several transcribing assistants who had access to the original tapes but who agreed to keep all information within the interviews confidential to prevent losing the intact meaning of interview information. This way the richness of the participant information was more readily retained, while at the same time, translation was accurate. I proposed this minor ethics amendment to QUT’s Research Ethics Committee and gained approval to undertake translation in this manner.
100 In addition, because my native language is Chinese and I had had no experience in qualitative research before this study, I found that doing the translating of the transcripts helped me to analyse the interview information in some ways. For example, when I used Chinese characters to analyse Pearl’s wall and Joyce’s line against people, I did not find their defense against people was so attractive. But when I translated their words into English, I suddenly had the picture of how they built their fortress against non-disabled people. This was an interesting topic because it explained why these two participants disliked being with others, and how they protected themselves because of their impairment. Their stories became a chapter in my thesis, and readers can refer to “chapter 6 fortress ladies”. Thus, to translate the transcripts into English was also good for me in that I was immersed in the analysis of the interview information.
4.3.2 Analysing by using the grounded theory approach
After completing the transcribing and translating work of an interview, I started to use the grounded theory approach to systematically analyse it. Grounded theory is a qualitative research method whereby a researcher uses a systematic set of procedures yet flexible guidelines to learn how study participants explain their statements and actions in the research settings. Then the researcher analyses data inductively to build a theory to understand them (Charmaz, 2006; Neuman, 2004b; Strauss & Corbin, 1998). As for the purpose of constructing a theory emanating from participants’ lived experiences of living their lives with a physical impairment in the study, the grounded theory approach was adopted to guide the data analysis process.
Coding and memo-writing
Coding is a major part of a grounded theory approach and involves assigning units of meaning to chunks of information collected during a study, such as the words, phrases, sentences, paragraphs or pages of interview transcripts (Hesse-Biber & Leavy, 2006; Miles & Huberman, 1994). Miles and Huberman (1994) state briefly that “coding is analysis” (p. 56). Charmaz (2003) suggests grounded theorists should start to code their data as they collect it. Coding data enables researchers to find or identify central themes, patterns, ideas, and concepts existing within the data (Hesse-Biber & Leavy, 2006).
In this study, while conducting the pilot study, I had begun my initial coding of it. After transcribing and translating the interview information from two pilot study participants, I used the NVivo software to assist me with line-by-line coding.
101 Because of this, I developed a preliminary coding system which enabled me to retrieve and organize thousands of lines of words quickly. This computerized coding system helped me to find some important sensitizing concepts. Charmaz (2003) found line-by-line coding sharpens the use of sensitizing concepts which “offer ways of seeing, organizing, and understanding experience” (p. 259). For example, in the early interviews, I found “social relationships” was an important issue because study participants talked about them first and most. Therefore, it reminded me that I could use the topic of social relationships as a sensitizing concept to explore how the participants understood the relationships they mentioned. This was helpful to systematically develop my coding system with the assistance of NVivo software.
However, because of the increasing amount of interview information, the analysis became more complex. I found using this qualitative software did help me in the early development of my coding system, but it also fractured the data in some way. Thus, I printed all the transcripts and read them carefully again and again. Then, I preferred to name the categories in the margin of the papers rather than depending on the software.
The dynamic coding process includes cycles of coding and memoing (Hesse-Biber & Leavy, 2006). I jotted down a memo after conducting each in-depth interview while it was still fresh in my mind and kept writing memos along with my different analytic ideas. For example, in the early stage of what I wrote about Pearl, many hurtful experiences came out like hurt at work, from family relationships, and feeling less supported by the disability legislation. In the later stages of my memoing about her, I found she had a fragile mind because of having lots of hurtful experiences in her life. For grounded theorists, memo writing is an essential part of the data analysis process and is used to elaborate, integrate their ideas or stumble across new thoughts by reading through and sorting memos (Charmaz, 2006; Hesse-Biber & Leavy, 2006). Writing and comparing memos continuously throughout the research process helped me to remain immersed in the analysis and to find concepts (i.e. categories and their subcategories) which were able to reflect the interview data. Thus, it led me to increase the level of abstraction of my analysis (Charmaz, 2006). In Pearl’s case , for example, having many hurtful experiences including discrimination everywhere, professional dominance, other people’s unwillingness to support as well as loneliness, made her psycho-social wellbeing so vulnerable. This situation reflected that she had a fragile mind. The discovery of the concept of “having a fragile mind” did not appear quickly in my
102 analysis. Instead, it took me considerable time to write and sort memos, and then suddenly I found it had been there waiting for me to find it someday.
Theorizing
While I found gaps in analysing the interview data, I would do theoretical sampling either in the earlier or later stage of my analysis to fill the gaps in categories and to clarify relationships among them (Charmaz, 2003, 2006). Take “social relationships” as an example: while I conducted two in-depth interviews with Hilda, I found family support was the most significant support for her to live her life with the spinal cord injury. Then, I wondered how her family relationships were affected after her injury. I went back to interview her again to understand the changes and her views on her family relationships. However, for some participants, I was unable to do such a face-to-face theoretical sampling while I was overseas. Then, I would use phone or email. For example, because I found Yugo talked about many strategies he employed to maintain his friendships in the in-depth interviews, I emailed him about why he perceived friendship as important in his life. After receiving his reply, I checked again whether I had understood and interpreted his information correctly.
During the evolution of the analysis stage, I spent much time doing comparative analysis. Hence, I tried to develop a large table to collect all my categories and their subcategories to organize the many categories and their subcategories. Below is my earlier development of a table. This was created in September 2007.
participant Micro world
Understanding Family (intimacy, General social of disability & others) relationships
Hilda hopelessness No opportunities
Pearl Yes, I am like an orphan (wall) wall
Joyce Am I a person peach wall with a disability?
Mary left alone No wall
Venice Not important mind?? Conditional wall
Judy fateful Easily contented Easily contented
103 Yugo Pleasing parents? diplomatic Acting timidly? Parental control? Diplomatic? Capitulating?
As I developed more tables, I found they just became larger and more complicated than the preceding ones, but no table could adequately show all the relationships among the categories. Therefore, I tried to use diagrams to depict the relationships among categories to reveal the emerged theory. For example, the diagram below was one of my attempts to depict what the theory might look like. I drew this in December 2007.
Perceiving
themselves as a What their life as a person with a physical disability person with a liked: physical disability Social relationships in the micro world:
Family relationships, Intimate relationships,
Friendship, Working relationships, Community
relationships
Social contexts in the macro world:
Meaning of disability legislation: Unworkable
regulations, Unavailable resources, Bureaucratic Management of Cultural understanding of disability: Language, living their life as a Social values & attitudes towards them, Religion person with a
physical disability
104 Unfortunately, no perfect pictures were found to illustrate all participants’ lives of living a life with a physical impairment in Taiwan. After much trial and error, and much discussion with my supervisors, I tried storylines to conceptualize what messages participants conveyed. Suddenly, one day, the term “fragile mind” reminded me I should think about why some participants had a fragile mind, and others did not. This then further led me to consider how they dealt with their lives with or without a fragile mind. Subsequently, according to their management of their lives of living a life with a physical impairment, three groups of participants emerged. They were fortress ladies, social networkers and the mind man (for further details of their stories, please refer to Chapters 6-8). In the three groups, I saw the fortress ladies as those who had a fragile mind because of living with a physical impairment. By contrast with this group, social networkers did not have a fragile mind. By further contrast with the previous two groups, the mind man had developed a spiritual strategy to surmount his life with a physical impairment. These cases arose from the data, and I did not import them by sampling to look for negative cases (Charmaz, 2006). These groups increased the density and the variations of the emerging theory (Charmaz, 2006). After further theorizing these three groups, the grounded theory of living a life with a physical impairment in Taiwan “it is more than just the impairment” was constructed and this enabled reflection of all participants’ lives (for further details of the constructed theory, please refer to Chapter 5).
Below is part of the earlier storyline I wrote in January 2008 (I apologise for my grammar mistakes, but I aim to show how I did the analysis for the emerging theory).
105 An early storyline: living a life with a physical disability
To understand “disability” in Taiwan, the findings and the researcher’s reflections on the in-depth interviews point out “not just disability”. To understand disability needs to understand how people lived their lives with the impairment. In the present study, participants are people with a physical disability. Hence, to understand part of disability in this research will focus on how participants lived their life with a physical disability.
Central domain: their perceiving of living a life with a physical disability
Firstly, their perceiving of living a life with a physical disability is the axial of the storyline (core category/central category) which connected with all other domains in the theory. In the core category, it includes properties as ‘getting physical hurt easily’, ‘whether having a fragile heart’, and ‘essential for independence /dependence’.
The property of ‘getting physical hurt easily’ was influenced by their physical impairment, i.e. restricted it to the aspect of physiology. The property of ‘whether having a fragile heart’ was brought by the impact of their impairment in the aspect of their psychological aspect. As for the property of ‘essential for independence/ dependence’, it was effected by impairment in their daily life and even their future.
What their social relationships looked like?
From the in-depth interviews, all participants inevitably talked a lot of their social relationships. That showed their social relationships played an important role in their daily life. For participants, social relationships meant people close to them in their life, which were family relationships, intimate relationships, friendships, working relationships and community relationships. They lived their lives with a physical disability had been intertwined with their social relationships deeply. Of course, some participants might draw more on one or several social relationships than others. It depended on which social relationships accounted for what degree of importance and meaningfulness to them.
A postscript:
I found theory-building took considerable time because its evolution required me to apply different strategies at different stages of analysis.
106 4.4 Research rigor
In this method chapter, I have detailed what I learned from the pilot study, how I conducted the study, as well as how I analysed the interview information from the previous three sections. In the last section of this chapter, I discuss the issue of rigor in this study because this concerns standards of quality.
There are a number of terms and working procedures relating to rigor reflecting various perspectives of qualitative researchers (Cobb & Forbes, 2002; Creswell, 1998; Miles & Huberman, 1994). Denzin and Lincoln (2005) propose that rigor in qualitative research includes “credibility, transferability, dependability, and confirmability”, equivalent to the criteria of the positivist paradigm, which are “internal and external validity, reliability and objectivity” (p. 24). Each of these issues is discussed below to assist how rigor was addressed in this study.
Miles and Huberman (1994) refer to confirmability as “relative neutrality and reasonable freedom from unacknowledged researcher biases that exist” (p. 278). The use of memo-writing to assist reflexivity in this study was helpful for me to examine my preconceptions and manage my biases (Cobb & Forbes, 2002). Credibility refers to whether qualitative researchers make credible findings in the view of their readers (Miles & Huberman, 1994). Member checking was one of the verification procedures and was undertaken in this study to seek the participants’ judgments of the accuracy of the interpretations and findings (Cobb & Forbes, 2002; Creswell, 1998). After each interview session, I employed memo-writing immediately to reflect on what the study participants had talked about, and to summarize the important themes arising from each interview session. Then I would discuss the important findings with the participant in the following interview session, and conceptualize important themes at the later analysis stage. Memo-writing and member checking were essential steps in the process of data collection and data analysis, and continued to be used in the study to assist in the shared knowledge building. For more complete detail of reflexivity and member checking, please refer to section 4.1.2.3 and 4.1.2.4.
Dependability means that the process of the research is under quality inspection (Miles & Huberman, 1994). An audit trail of methodological and analytic decisions can assist in the development of dependability in qualitative research (Cobb & Forbes, 2002; Creswell, 1998; Miles & Huberman, 1994; Rice & Ezzy, 1999a). Before conducting the study, I did a confirmation seminar at university and attended two conferences to present the research design, which included the
107 incorporation of my learning from the pilot study, to interested researchers for their examination of my study. Moreover, throughout the gradual development of this study, this PhD study was further examined by supervisors, school academics and external academics to ensure reasonable and logical research design and study findings. After completing the PhD thesis, its publications will be further examined by readers in the future and I welcome comments and suggestions related to the study (Witt & Ploeg, 2006).
Transferability means that in the final thesis, I provide a rich and thick description of the context of the study so that the reader can decide whether the findings can be transferred to other similar contexts or in some way be generalized (Cobb & Forbes, 2002; Creswell, 1998; Miles & Huberman, 1994). In the study, I applied the developed theory “it is more than just the impairment” to portray participants’ stories of how they lived with an impairment in the Taiwanese context. This can allow readers to quickly gain a deeper understanding of participants’ lives and readily connect with their related experiences (please refer to Chapter 5 for the developed theory and Chapters 6-8 for participants’ stories for more complete details). Furthermore, representing participants’ stories in such a way can enhance the reader’s “resonance” with the research topic because their “experiential or felt effect of reading the study findings” allows them to gauge whether the findings are transferable to other contexts (van Manen, as cited in Witt & Pleg, 2006, pp. 225-226).
108 SECTION 3 WHAT DID THE STUDY FIND?
Grounded in the study findings, a theory of living a life with a physical impairment in Taiwan emerged, which was named “it is more than just the impairment”. In the developed theory, participants’ perceptions of themselves in terms of living a life with a physical impairment guided the construction of other themes. First, combined with participants’ perceptions of the context in which they were living, the theory presented their lives in Taiwan. Second, it explained how participants managed their lives; third, it revealed what the outcomes of their management were; finally, the iterative process among these themes was also indicated by the theory. Chapter 5 is concerned with exploring these issues in the developed theory.
I then used the theory to portray seven participants’ stories. It is hoped that the developed theory will provide a vivid view of living a life with a physical impairment in Taiwan and provide a better understanding of how having a physical impairment is intertwined with participants’ lives. Participants were grouped into three categories according to how they dealt with their lives with a physical impairment. These are detailed in Chapter 6 (fortress ladies), Chapter 7 (social networkers), and Chapter 8 (the mind man).
This section begins with an introduction to the developed theory, and then the seven stories are presented.
109 CHAPTER 5 THE DEVELOPED THEORY: “IT IS MORE THAN JUST THE IMPAIRMENT”
The grounded theory of living a life with a physical impairment emerging from the information from the series of in-depth interviews with seven Taiwanese people who have a physical impairment uncovers how they have lived with this impairment in Taiwan. The co-constructed theory by participants and me in the study is named ‘it is more than just the impairment’.
Participants identified that living a life with a physical impairment involved more than dealing with the ‘impaired body’; their thoughts and feelings, and their need for continued and sustained support to live with this impairment also fundamentally influenced their perception of their well-being. Interestingly, from participants’ experiences of and perceptions of living a life with a physical impairment, it could be inferred that having a physical impairment had impacts not just on the difficulties of the body, but also had pervasive influences on the emotional aspects of their lives and on the ongoing need for support. Therefore, an overall term can be used to summarise their lived experience of living with a physical impairment: ‘more than just the impairment’ and this is why the developed theory is thus named.
In the theory, participants illustrated how their lives are closely intertwined with the Taiwanese context. They indicated that their everyday lives concerned not only living with an impaired body, but were also deeply influenced by the Taiwanese context, which consisted of people around them, cultural attitudes towards their impairment, and disability legislation in their everyday life. Participants also talked about the ways in which they managed their lives with an impaired body within this context. Finally, they indicated the outcomes of these strategies and how these influenced their interactions with the Taiwanese context in which they were living their lives. In effect, the iterative operation of the theory was formed by participants’ perceptions of living a life with a physical impairment, of the context in which they were living their lives, their management of their lives in this context, and the outcome of the lifestyles they chose (see Figure 5.4).
In this chapter, how participants saw their lives, how they managed them, and what kind of people they became will be introduced. This leads to the structure of the developed theory. After that, in the following three chapters, I use “it is more than just the impairment” to depict participants’ stories.
110 5.1 Participants’ lives in Taiwan
What does living a life with a physical impairment for participants look like? Participants pointed out that it included two main parts: their perceptions of living a life with a physical impairment and their perceptions of the context in which they were living their lives. These two parts were closely connected indicating the impossibility of detaching people from their context.
How participants told of their life is detailed below.
5.1.1 Perceptions of living a life with a physical impairment
‘Perceptions of living a life with a physical impairment’ describes how participants viewed the influence of their impairment on their daily living. It also highlights the centrality of physical impairment as a significant impact on their everyday existence.
In the study, ‘perceptions of living a life with a physical impairment’ has a significance equal to the ‘core theme’ in a grounded theory. A core theme is similar to the notion of ‘central category’ or ‘core category’ identified by such grounded theory proponents as Corbin and Strauss (2008). The importance of participants’ perceptions of themselves in terms of living their lives with an impaired body is that it underpins the essence of their lived experiences of having a physical impairment, and drives the development of other related themes of the theory.
Participants identified three aspects of their perceptions of living a life with a physical impairment in Taiwan. These were:
- Living with an impaired body - Dealing with the mind - Dealing with the need for support
In effect, participants told how having a physical impairment influenced their everyday lives. They indicated that it had impacts not only on their body, but also on their thoughts and feelings (i.e. mind) and their concerns about the availability of ongoing support in their lives. I use participants’ words to depict the three categories and their relationship to each other. Table 3 (in Appendix 18) shows the related categories identified by participants for their perceptions of themselves of living a life with a physical impairment.
111 5.1.1.1 Living with an impaired body
Participants identified one of their perceptions of living a life with a physical impairment as ‘living with an impaired body’. According to this aspect, the physical impairment impacted on how their bodies worked in everyday living and as such their lives were entwined with having the physical impairment.
As the impairment affected all participants’ ability to move around, it meant that they experienced restrictions in their control of their bodies and the effects of their impairment in their daily lives. Therefore, participants identified three kinds of influences brought about by living with their impaired body. These were ‘living with pain’, ‘incurable impairment’ and ‘mobility difficulties’.
a) Living with pain
‘Living with pain’ represented the vivid descriptions of several participants’ perceptions of the effect of their impairment. For example, Hilda lived with an impairment which brought abdominal pain. The pain disturbed her quality of sleep. She described this: “I have abdominal pain all night, so I take medicine once or twice at midnight…If it continues, I will not fall asleep all night!”
Furthermore, these participants explained that living with pain also included having discomfort under particular circumstances. For instance, Pearl found that having an x-ray taken might be painful for her. She said: “The process of taking an x-ray …when transferring, if I were not careful I would fall and then my breathing would be troublesome; or if the side of my body was not exactly straight, I would feel pain right here!”
b) Incurable impairment
Living with an impaired body meant it was a reality that participants had no choice but to live with it permanently because it was impossible to heal. For example, Pearl understood her impairment was incurable. She heard the doctor explain her situation to someone as: “she is a person who we cannot operate on. Her situation is chronic, and it’s impossible to cure or alleviate [her impairment]”. Some participants described the associated impacts of having an incurable impairment. For example, Joyce found she had lost sensation in her foot forever because of her impairment. Thus, her foot could easily be hurt. She described the effect of having an impairment as: “The sole of my foot gets hurt easily …because my foot has no sensation”. Likewise, they found their incurable impairment would make their
112 bodies weaker because their physical situation would get worse as they got older. For example, Mary knew that she would become weaker as she aged. She said: “When I get older, I will have less physical strength”.
c) Mobility difficulties
Participants thought the most significant difficulties brought about by their impairment were mobility problems. Yugo concluded: “[the most difficult influence of the physical impairment on his life] I suppose is mobility difficulties!” Also, Mary found her working ability was worse than non-disabled people because she had mobility difficulties. She said: “Our mobility difficulties make the difference!” In addition, Pearl stated that due to her lack of body strength she was unable to walk. She said: “My body doesn’t have the strength below my neck to let me walk”. Similarly, because Hilda’s spine was injured, she could not move her body voluntarily. She told of her serious impairment restricting her mobility: “The nerve was broken so my whole body is unable to move!”
Furthermore, participants exemplified the impact of having a physical impairment in the mobility aspect of their daily life. For example, Joyce described her clumsy walking and inability to exercise as: “I am awkward going to the toilet and walking” and “I can’t do exercise like playing baseball, soccer or running”. Venice explained his difficulties in reaching for things: “my feet are unable to stand so that my hands can’t reach something at a high level”.
Summary
From the above, participants addressed their perceptions of living with their impaired bodies as living with pain, with incurable impairment as well as having difficulties in getting around.
5.1.1.2 Dealing with the mind
In addition to the effects on their bodies of having an impairment, the participants also discussed the effects on their thoughts and feelings. This section explores how having a physical impairment influenced participants’ thoughts and feelings in their everyday lives in Taiwan.
Participants used the term ‘mind’ to describe their thoughts and feelings. Hence, the word ‘mind’ is adopted in the study to express how participants made sense of the close correlation between their impairment and their thoughts and feelings.
113 Two participants (Pearl and Joyce) revealed that living with a physical impairment negatively influenced their thoughts and feelings. This effect was termed by Pearl as ‘fragile mind’. Conversely, for several participants such as Yugo, Mary, Judy and Hilda, having a physical impairment did not undermine their thoughts and feelings. In contrast to having a fragile mind like Pearl and Joyce, these participants were described as having a ‘non-fragile mind’. Furthermore, Venice pointed out that living with the impairment gave him the chance to improve his spirit. Hence, his positive views on having an impairment revealed his strong mind. These three categories are detailed below:
a) Fragile mind
Fragile mind refers to the fact that having a physical impairment influenced a participant’s thoughts and feelings as being vulnerable and sensitive to his/her social relationships and social milieu. Both Pearl and Joyce pointed out that they had a fragile mind because of having a physical impairment. Pearl described her fragile mind thus: “Of course, there are people with disabilities whose minds are very fragile, including me. I also have a very fragile mind”. Joyce told of getting hurt easily when she found people seemed to be talking about her impairment. She said: “When people don’t talk about me, I can treat it very calmly. But if it were about me, only a little, I feel terribly hurt…[her face looked sad]” ‘Fragile mind’ effectively represented Pearl’s and Joyce’s perceptions of the negative impact on their thoughts and feelings from the impact of the physical impairment.
They described two interrelated factors leading to the formulation of their fragile mind. The intrinsic one was ‘feeling uncomfortable with having a physical impairment’ and the extrinsic one was ‘having hurtful experiences’. The intrinsic barriers within participants themselves and the hurtful experiences from the context in which they lived had deep effects on each other. Both of them were correlated. Each of them is addressed below:
i) Feeling uncomfortable with having an impairment
Both Pearl and Joyce identified that their mind was vulnerable to hurt because their physical impairment led them to have uncomfortable feelings about having a physical impairment. For example, Pearl admitted that because she was a person with a physical impairment she felt uncomfortable when interacting with people. She described one the barriers she had in her attitudes towards non-disabled people as being jealous of their ability to walk: “Because we definitely have barriers in our mind, because our interpersonal relationship can’t be as good as some
114 people’s! Because we envy your ability to walk and wonder why can’t I? We do, we feel uncomfortable!”
As for Joyce, the reason for her mind reacting so vulnerably and sensitively to her social milieu was that she could not accept herself becoming a person with a physical impairment. She believed this was because she was not born as an impaired child but she acquired the impairment when she was a primary school student. Hence, her uncomfortable feeling of having the impairment was that she had difficulties in accepting living her life with the impairment. She said: “It is very difficult for me [to admit I am a disabled person] because I was not born like this”.
Thus, the intrinsic barriers from their uncomfortable feelings of having a physical impairment made participants’ minds become fragile and made them easily exposed to hurtful experiences.
ii) Having hurtful experiences
The extrinsic factor leading to the formulation of a fragile mind was having hurtful experiences from their social world. For example, Pearl told of feeling hurt in her social relationships such as in her work place. She got hurt because she could not put up with her colleagues’ wanting to train her; they did not provide help when she was really in needed it. Therefore, she was sad and felt hurt by this working relationship. She said:
When I try to accept myself and I do anything and ask myself for a high standard [like to complete a task], other people still treat us like this [as if we need more training, but we don’t. We just need help], I can’t take it anymore!
Joyce also had hurtful experiences because of her impairment, such as being stigmatized by a primary school boy. She remembered it vividly y, even after many years, and could not forget the person’s face. She recalled the hurtful experience as “I was told that I was a cripple by a boy in the fourth year of primary school... I still remember who he was. Although I don’t know his name, I still remember what he looked like!”
The hurtful experiences Pearl and Joyce experienced had happened throughout their lives and thus pervasively undermined their thoughts and feelings. This long-lasting effect made them feel uncomfortable about being a person with a physical impairment constantly.
115 To conclude, participants’ uncomfortable feelings about their impairment and hurtful experiences were interrelated. Both also weakened their thoughts and feelings, which led to the formulation of a fragile mind.
b) Non-fragile mind
In contrast to fragile mind, non-fragile mind was identified by four of the participants. It refers to the fact that having a physical impairment did not make a participant feel he or she would get hurt easily in respect to his/ her thoughts and feelings. For example, Yugo said: “I don’t think these questions [in the interview] are threatening to me”. Likewise, Mary did not mind people calling her a handicapped person. She explained: “we were born like this”. These exemplars showed that these participants’ thoughts and feelings did not become vulnerable because of their impairment. Therefore, they did not have a fragile mind like Pearl and Joyce.
These participants pointed out two correlated factors for preventing their mind from being fragile: one intrinsic factor - ‘accepting living with a physical impairment’; one extrinsic factor - ‘not having hurtful experiences’.
i) Accepting living with a physical impairment
Yugo, Judy, Hilda, and Mary explained that because they accepted the fact of living with a physical impairment, their impairment did not erode the well-being of their mind. For example, Yugo was open-minded when talking about his impairment in the interviews because he accepted he was a person with cerebral palsy. He said: “I think it depends on whether you accept yourself!...So these [interviewing questions] are not taboo topics for me!” Also, Hilda simply accepted her impairment as “I had bad luck!”
ii) Not having hurtful experiences
Turning to the extrinsic factor for keeping their feeling and thoughts positive, not having hurtful experiences was critical for this. For example, Yugo said: “I haven’t got seriously hurt!…So to some extent I am more optimistic and positive”.
Furthermore, some participants also mentioned that having supportive experiences was helpful for maintaining the well-being of their mind and having a long-lasting effect on it. For example, Judy told of the positive influence of living in the institution in her childhood on her later on interpersonal relationships: “I found
116 out that there’s no difference between me and normal people after I stepped into society, also getting along well, I found that environment in childhood was very important!”
The above two factors contributing to non-fragile mind are correlated. For example, Judy had no difficulties in accepting having polio because she acquired her impairment as a baby. Her acceptance of being impaired meant that stigmatizing experiences did not hurt her as they did Pearl and Joyce. She explained: “Because we have been like this since our childhood, those words don’t produce strong hurt or something to us”. Thus, not feeling hurt because of the impairment also helped her to accept living with the impairment during her lifetime and so she could maintain her sense of well-being.
c) Strong mind
Strong mind was different from both fragile mind and non-fragile mind. A person with a strong mind emphasized his spiritual development and thus having an impairment had no influence on thoughts and feelings. This was identified by one participant, Venice. His impairment made him realize the importance of pursuing his spiritual development rather than being restricted by the impairment. He said: “our whole mind is intact, that’s good…I don’t care that my feet or my hands are not good because these are not important!”
Summary
Following addressing living with the impaired body, in this section, two participants described how their mind became fragile as a result of having a physical impairment; four participants identified how they maintained the well-being of their mind despite their impairment; one participant identified how his impairment enhanced the well-being of his mind. The well-being of a participant’s mind was an important indicator for what people they chose to become, such as becoming a fortress lady with a fragile mind, a social networker with a non-fragile mind or a mind man with a strong mind. These are detailed further in Chapters 6, 7 and 8.
The next section describes participants’ perceptions of living a life with a physical impairment in relation to needing support.
117 5.1.1.3 Dealing with the need for support
Participants identified the third aspect of their perception of living a life with a physical impairment, namely dealing with the need for support. This refers to participants’ perception that they needed continual support in living their lives with a physical impairment. They identified two aspects of this perception: first, they perceived the needed support was necessarily ongoing in their daily living because they believed either that their impaired body or the well-being of their mind needed support. They identified what support they needed in their lives. Second, they understood that it was impossible to have support available all the time because they would inevitably lose their supporters. Additionally, the influence of aging would mean they had less physical support for themselves, or they would become a burden to others. These are detailed below:
a) Recognising needed support
Recognising needed support describes participants’ perception that they needed support to manage living a life with an impairment. They recognised three important supports, which are described below.
i) Self-reliance
Pearl, Joyce and Venice explained how they could get needed support from themselves, that is, by being self-reliant. For example, Pearl said that she did not have support from family and others. Being responsible for her own life, she needed to be self-reliant. In this way, she could continuously support herself. She said: “People with a disability still need to be self-reliant…Today, I need to live by myself. … I am alone today. If I die, no one can help me deal with it”.
Likewise, Joyce and Venice pointed out the impossibility of having long-term, sustained support from others. Hence, they realized they had to be self-reliant. For example, Joyce talked about being self-reliant by getting a job. She explained: “to have a job and I am able to feed myself”.
ii) Getting others to help
Second, many participants indicated their need for help from other people because of the physical restrictions resulting from their impairment. For example, Yugo said: “Because I have difficulties in mobility, I need friends’ assistance in my life”. Likewise, Mary found she needed colleagues’ help to enable her to continue her
118 work. She said: “Although there are some things I can do, I still need people’s assistance”. As for Hilda, she depended on significant amounts of physical assistance from people because of her serious impairment. She told of her ongoing need to be taken care of by someone, otherwise she could not live. She said: “I can’t move and turn my body over so I depend on others’ help…If no one took care of me, how could I live!”
Furthermore, three participants (Hilda, Mary and Judy) mentioned the importance of securing financial support to assist the well-being of their families. For example, Mary described the subsidies from the government and charitable organizations in helping her family’s financial situation. She said: “We have living assistance for low-income households! …And the kids have subsidies from the children’s center... Otherwise, how would I afford the family living expenses?”
iii) Company
Finally, participants like Hilda, Mary and Yugo also identified the importance of companionship as a needed support in their lives. For example, Mary found many people with an impairment were similar to her in marrying a partner also with an impairment for long-term company. She said: “like in our association [for impaired people], the handicapped marry a handicapped, and they keep each other company”.
b) Fear of unavailability of support in their lives
Participants perceived that they needed support to live their lives with an impairment, but they were aware that such support might not always be available. They were fearful of this. They identified three factors associated with this concern. Each of these is addressed now:
i) Losing current support
First, many participants mentioned that they would lose or had lost important and current support in some unavoidable situations. For example, at the time of interview, Yugo and Joyce received ongoing support from their parents. However, they also realized that when their parents died, this family support would disappear. Yugo said: “it’s impossible that my family always takes care of me like now!” Similarly, Joyce said: “it is impossible to depend on them [her parents] for my whole life”. Hilda also identified lost financial support for herself and other family members. Because she and her husband were impaired, and her son was in jail, no
119 one in the family could work. She told of this painfully: “My husband has had a stroke so he can’t make money, and his head is not clear. Neither can I. Neither can my son [because he is in jail]”.
In addition to losing important support from family, Mary and Venice pointed out their loss of current support from some disability related services. For example, Mary found she had suddenly lost financial support from the government for the coming year because of her husband’s funeral assistance from the insurance and relatives beyond the low-income family limit. After reading the information letter, she said: “We don’t have the status of a low-income family this year!” As for Venice, when he had been a member of a disability organization, he experienced losing non-disabled members’ physical assistance because of the change of policy. He felt other members with an impairment could not do a task well without physical support from non-disabled people. He said: “when non-handicapped people were organizers, they handled the task very well. But later these organizers were handicapped, and they could not accomplish the tasks!”
ii) Aging
Second, several participants identified the lack of support in their lives with their aging. They realized that aging would decrease their physical strength to do things by themselves or to take care of themselves. For example, Mary said: “When I was younger, I was able to climb upstairs…but it’s hard for me now. I don’t have enough physical strength. There is a difference when I get older!” Likewise, Pearl said: “I can press the keyboard now, but gradually I might not be able to press it and I will not be able to do anything!” It indicated that participants perceived they would find it harder to support themselves as they aged.
iii) Being a burden
Third, several participants frequently mentioned the fact that they could not get long-term support from their personal relationships because these people saw taking care of them as a burden. For example, Joyce argued that non-disabled people did not intend to have intimate relationships with those with an impairment because taking care of them was a burden. She said: “Talking about caring [for people with an impairment] is a heavy burden”. Likewise, in a marriage, Venice thought taking care of the other one with an impairment was a burden for a non-disabled partner. Hence, they were likely to divorce. He described how the situation would be: “When handicapped people depend on their partners for everything, one day they will run out of patience...so they will leave”. Turning to
120 family relationships, Mary married so as to avoid being a burden to her family: “if I had not married, who would feed me?!”
Summary
In this section, participants described what support they needed to live their lives with the impairment. However, they also understood that some support they had could not last forever because the sources of support would fade away because of inevitable factors, such as the death of support providers, their aging, or being seen as a burden to others. Hence, the availability of needed support in their lives was a concern for them.
Figure 5.1 depicts participants’ perceptions of living a life with a physical impairment as ‘living with an impaired body’, ‘dealing with the mind’ and ‘dealing with the need for support’ – these perceptions were the central themes of the theory of ‘it is more than just the impairment’.
121 Perceptions of self on living a life with a physical impairment
Living with an impaired body
Dealing with the mind
Dealing with the need for support
Figure 5.1 Participants’ perceptions of themselves on living a life with a physical impairment
122 5.1.2 Perceptions of the context in which participants were living their lives
This section describes participants’ perceptions of how the context in which they lived influenced them in living their lives with their impairment. This theme is termed ‘perceptions of the context in which participants were living their lives’. Participants identified three contextual factors relating to this. These were:
- Social network, described as the relationships in their everyday world, i.e. their daily living relationships in their everyday lives;
- Cultural attitudes towards their impairment, described as a pervasive influence of how non-disabled people perceived their impairment and what attitudes non-disabled people took towards them;
- Disability legislation, defined as a broader level of impact on the meaning of disability legislation in Taiwan and the extent to which the government could provide support for them to live a life with an impairment.
Table 4 (see Appendix 18) and Figure 5.2 depict related categories identified by participants for this theme. Each of the contextual factors of their perceptions of the environment in which they lived is explained below:
5.1.2.1 Social network
Social network refers to participants’ interpersonal relationships with people around them in their everyday lives. Every participant mentioned their social relationships first and most frequently when they shared with me those things which were important or meaningful to them in their lives. Hence, they lived a life in which their impairment and the people around them were interwoven.
Participants identified two types of social relationships. One was hurtful social relationships and the other was supportive ones. All participants mentioned that they had experienced hurtful social relationships in their lives because of having a physical impairment. However, some participants such as Pearl and Joyce identified more hurtful experiences or perceptions than others in their social networks. Their stories are described in detail in Chapter 6: the fortress ladies. In contrast to the hurtful social relationships mentioned by these two women, some participants such as Judy and Yugo identified more support than hurt in their social relationships. These two participants’ stories are addressed in Chapter 7 the
123 social networkers. The degree of hurt or support participants experienced and perceived varied from person to person according to their different life experiences. In Chapter 6-8 I use ‘it is more than just the impairment’ to portray every participant’s story in more detail. Now, the focus is on how participants perceived and experienced their social network as being hurtful or supportive in their social world.
Table 4 (see Appendix 18) shows related categories identified by participants for social network. Two kinds of social relationships noted by participants are detailed below:
a) Hurtful relationships
Hurtful relationships refer to a participant’s experiences and perceptions of hurt in his/her social relationships associated with their physical impairment. The hurtful social relationships were brought about by discrimination, professional dominance, unwillingness to support, as well as resulting loneliness. Each of the factors is detailed below:
i) Discrimination everywhere
All participants explained that one of the reasons that they experienced hurt in their social relationships was because of their experiences of being discriminated against. The pain experienced from discrimination permeated many of their social relationships, including personal relationships, in wider social settings, and in the workplace. The pervasive discrimination these participants experienced in their social networks is addressed below:
1) In personal relationships
Participants identified that they were hurt because of discriminatory experiences because of their impairment in some of their personal and close relationships. Some participants mentioned that they were discriminated against in family relationships. For example, Hilda found that after she became impaired, her daughter-in-law was so afraid of taking on the responsibility of taking care of her that her daughter-in-law divorced her son. She explained: “Because I became like this, the daughter-in-law was scared. She was afraid of looking after us so they divorced”. Likewise, most participants also identified discriminatory experiences in their intimate relationships with non-disabled people. Mary explained: “of course I want to marry a non-disabled person! But I have to think about whether
124 people want a woman like me! It’s discriminatory!” Furthermore, several participants experienced being discriminated against in developing friendships. Pearl told of her experience of being rejected by non-disabled people on the Internet. She said: “still some people on the Internet know I am disabled and then they don’t send anymore messages. They said you are a cripple! It makes me feel very hurt and very sad!”
2) In social settings
In addition to being discriminated against in personal relationships, several participants also experienced this in some charitable and social settings. For example, Pearl talked about her experiences of going to church. She found the pastor invited people with an impairment to church to show off that he was doing charitable things. In fact, the pastor cared about how much people donated but did not care about them at all. She recalled:
The pastor would invite us to go to church. After going to church, I found out one thing: they would praise someone for how much they donated. But for those disabled friends, they didn’t care about us. Their point was just to invite us and then to let people see what they were doing [participant’s emphasis]!
Moreover, not only non-disabled people but also people with an impairment inflicted hurt in relationships with others with an impairment. Venice particularly pointed out his hurtful experiences of being discriminated against by others with an impairment. He identified these hurtful experiences happening at that time when he was a member of a disability organization. He found some members with an impairment did not perceive themselves as having an impairment because they became impaired in their adulthood. Hence, they did not get along well with others who were born with an impairment but despised these people. He said: “Many handicapped people didn’t think they were handicapped! ... So he [a member] looked down upon us we who were handicapped from birth, he thought we were handicapped people, but he wasn’t”.
3) In employment
Third, most participants experienced being discriminated against in employment. Yugo said: “Speaking about employment [for people with an impairment], I think it’s somewhat discriminative!” All participants found being a person with a physical impairment made it difficult to get a job. For example, Joyce said: “It is
125 very difficult for us to get a job”. In addition, many participants mentioned that people with a physical impairment were often discriminated against in the workplace and as a result they could be more easily fired than non-disabled people. Mary talked about her experience of this. When she had worked as a clerk in a bus station, she was fired because her boss found a non-disabled lady to replace her. She said: “in the beginning I was full-time, and then they found someone, the boss told me: You can go home [participant’s emphasis]. So I was fired, and a lady replaced me”. Moreover, some participants found people with an impairment were treated unfairly in their workplace. For example, Venice said his friend faced difficulties in gaining promotion in a bank because he had an impairment. He stated: “In regard to promotion …they thought because you were a handicapped person, other people could do it but you couldn’t”.
ii) Professional dominance
Hurt caused by service providers was particularly identified by Pearl and Joyce in their experiences of contact with them. Their past experiences of professional dominance were still affecting their views on and interactions with service providers. They identified the hurt of professional dominance in several ways.
First, both of them felt service providers took a superior attitude to them as service users. For example, in Joyce’s experiences of seeing a doctor, she found her doctor tended to use the authority of his profession to order his service patients to adopt his advice. She explained: “The doctor would think that he has the authority and you can’t challenge it”.
Second, these two participants pointed out the pain resulting from the attitudes and treatment of service providers’ professional dominance. For example, Pearl felt hurt by the depersonalized treatment she experienced when having a health examination in a hospital. Because the medical staff talked without respect and acted rudely to her, she felt hurt. She said:
From the responses and actions of the medical staff, I felt very upset!... It was just like they were lifting a pig, an animal. Just pull her there and put it down, as well as change a bed! It was terrible the way they spoke about me!
Also, Pearl experienced abuse in an institution for children with an impairment in her childhood. She recalled how the teachers there used their own ways to
126 discipline her. She said: “I was an abused child there. I was hit and dragged from the wheelchair to the ground and made to drink urine!”
Finally, Pearl and Joyce had the same feeling of lack of empathy in their relationships with the service providers. Pearl related an example of her interaction with a social worker to illustrate how the service providers did not care about her feelings. She said: “I have fallen down; why you [the social worker] said I didn’t stand well so that I fell down! This is not the point!” Likewise, Joyce perceived that the doctor could not understand how his or her patients felt because of a lack of empathy for them. She summarized her perception of a doctor as: “Only when the doctor becomes a patient, can he appreciate how a patient feels”.
iii) Other people’s unwillingness to support
Several participants revealed that they felt hurt in their social relationships when they needed others’ support. The hurt identified by these participants were that people around them were unwilling to help.
Pearl addressed this hurt in her daily life. When she asked for people’s help, she found from their attitude that she knew whether they were willing or not. She found that, no matter whether they were children or adults, their reactions were similar: they felt she was bothering them. She used an example of when she needed others’ assistance to fetch water or to go to the toilet to illustrate this hurt caused by people’s attitude. She said:
From my own experience, I wanted to have a cup of water or bothered someone when I wanted to go to the toilet, and I needed to see if they were happy to do so. Of course, kids had facial expressions showing whether they were willing or unwilling to each other. But as I grew up, I found we adults are also like this: I need to help you for everything, can’t you figure it out by yourself?
Furthermore, some participants identified that their family members were sometimes not willing to provide the support they wanted. For example, Yugo and his parents had different perceptions on the issue of accessibility at home. Yugo found there were many barriers for him; however, his parents seemed to have no intention of removing them. Yugo said: “I encounter more barriers at home instead…Perhaps my parents are used to it [the current mode of taking care of him] so they think to keep it is the best”.
127 iv) Loneliness
Several participants revealed that their impairment resulted in their loneliness. Their loneliness was characterized by ‘lacking closeness in personal relationships’ and ‘I can’t do things when I want to as much’. I will use their experiences to explain how these factors resulted in their lonely life.
1) Lacking closeness in personal relationships
First, several participants experienced loneliness resulting from a lack of closeness in their personal relationships. For example, Mary described the growth of her children and the death of her husband leading to a lonely family life. She explained: “After the children grow up, they have their work. I am alone, and my husband died. I feel…lonelier!” Also, Pearl told of her loneliness resulting from a lack of closeness in friendships. She said: “In my heart, I feel friends are far away from me. I don’t have friends”. Pearl also encountered a lack of closeness in her working relationships. She found she was excluded from other non-disabled colleagues. She told of her experience of this: “Sometimes they dined out together, but I didn’t know. …Everyone talked about the same thing and had fun, and I didn’t know, so it was very obvious that I felt isolated!” Thus, lack of closeness in the workplace made her lonely.
2) I can’t do things when I want to as much
Second, having an impairment also physically hindered some participants’ capacity to develop their social life. Joyce described this as: “I can’t go out for fun….I can’t do things when I want to as much”. Likewise, Hilda pointed out that she could not participate in activities she wanted to do, like going to church. She said: “I can’t go to church! If I were not impaired, I could go to church. However, it’s impossible, really impossible! This is really a very serious handicap [participant’s emphasis]!” Also, Pearl related how she could not go to see a movie like non-disabled people. She argued: “People like you sometimes go to a movie, but for me, it’s impossible!” In such a case, these participants’ social life was limited because of their impairment. Thus, living with the impairment made them feel lonely.
This section has addressed how participants got hurt in their social relationships because of having a physical impairment. The pain identified by participants resulted from discrimination everywhere, professional dominance, other people’s unwillingness to support, as well as their impairment resulting in loneliness. Pearl
128 was the only participant who experienced all of these hurts. In contrast with her, some participants had not had many hurtful experiences in their lives. Instead, they mentioned the support in their social relationships. The following section discusses what these supportive relationships were, and how the support worked.
b) Supportive relationships
Supportive relationships refer to a participant’s experiences and perceptions of feeling supported in their social relationships with their physical impairment.
All participants except for Pearl described several supportive relationships in their lives. These were support from people in their daily life, including their personal relationships such as their family, friends, colleagues, and school teachers and people they met when they accessed a disability service. However, Pearl did not see any supportive relationships in her life at all.
Because of the different roles of support providers, participants received various types of support from different groups of people. The supportive relationships these participants identified, the ways in which their support providers offered assistance or care to them, are now addressed:
i) From personal relationships
All participants except for Pearl mentioned that they had experiences of feeling supported by their family, friends, colleagues, school teachers, or people’s generosity. How they perceived such assistance from their personal relationships is detailed below:
1) Family
Family was the place which provided the most significant support for most participants to live their lives with the impairment, such as Hilda, Mary, Judy, Yugo, and Joyce. The different roles of participants in their families, and the family support these participants received were varied. For example, as a mother with a physical impairment, several female participants had gained support from their children such as doing domestic chores or taking care of them. For example, Judy explained how her children had become her helpers in terms of doing household chores. She said: “There were many things at home they could help me with. They helped me mopping, sweeping, hanging up and bringing laundry in!” Similarly, after Hilda was injured, she was looked after devotedly by her daughters because
129 they provided a lot of support in her daily life. She described the daily assistance from one of her daughter’s as “she [her daughter] lifts me out and in, buys food, does many things. She does everything!”
As children with a physical impairment, most participants had received strong love and protection from their parents or siblings in their childhood. For example, Mary was loved by her parents: “My parents loved me dearly!” Joyce explained that she was protected ‘like a peach’ in her family. She said: “A peach cannot take pressure! A peach is very soft, cannot be touched, and is protected very well”. These participants indicated they would or they had enjoyed their parents’ love and protection until their parents died.
For married participants, they also got support from their spouse. For example, Mary recalled how her husband would assist her with domestic chores when he was alive. She said: “He would help me do the housework”. In addition, some married participants pointed out that they had also gained support from their parents-in-law. For example, Judy mentioned her mother-in-law helping her to take care of her young children for several years. She recalled: “at that time my mother-in-law took care of my two boys almost until they went to kindergarten”.
From the above, it can be seen that family provided significant amounts of important support in these participants’ everyday lives. They indicated that they received support from different family members: their children, their siblings, or their parents-in-law provided support at various stages of their lives; their parents and their spouse provided support throughout their lives as long as the family supporters were alive.
2) Friends
Mary, Yugo and Judy identified the support of their friends as a significant part of their lives. For example, Yugo said: “friends to me are very important!” These participants thought having friends was a good thing in their lives because they experienced a lot of physical assistance from them. For example, Mary’s friends would help her with some of her domestic chores. She described this as: “my friend sometimes helps me use the washing machine to wash clothes and then dry them in the sun”. Likewise, Judy’s non-disabled friends helped her to get on her scooter. She described this as: “I go out with some friends. When we are leaving, firstly they [non-handicapped people] would park our scooters well, …after we go
130 up and leave, they leave”. In addition to physical assistance from these participants’ friends, they also enjoyed friends’ emotional support very much. For example, Yugo described his friends’ company as: “I enjoy very happy and lively interactions with them!” Mary said her friend was the matchmaker for her and her husband. She said: “We met each other through our matchmaker [Mary’s friend]”.
3) School teachers
Some participants mentioned they had support from school teachers. For example, Yugo’s school teacher would consider his impairment, and then think about another means to rate his assignments than the way for non-disabled students. He said: “if my teacher asked for ten thousand words of assignment, he might say: ok, you don’t have to write but you need to have an oral exam with me”. In addition, Mary’s children received financial assistance from school teachers so they had an exemption when they went to kindergarten. She noted: “When my elder daughter went to kindergarten, …the school teacher thought my family’s financial situation was bad, and I and my husband were handicapped,…so they gave us an exemption spontaneously!”
4) Work Colleagues
Mary also stated that she received significant support from her work colleagues. For example, when she had worked in a yarn factory, her colleagues were willing to help her. She recalled: “they would help me move them [materials and tools for making yarn], and didn’t refuse!”
ii) From disability services
In addition to having support from personal relationships, several participants said they felt supported when they accessed disability services. The supportive services they experienced were from organizations for people with an impairment, and particular service workers from a rehabilitation service and services for students with an impairment.
First, both Mary and Judy had the experience of feeling supported in organizations for people with an impairment. For example, Mary was involved in a local disability organization. She thought being a member of that group was good because it fought for the rights of people with an impairment and provided assistance,
131 information and courses that they might need. She described the support she gained from the organization: “It fights for some of our benefits! See what benefits we have and what we need. Members have a monthly publication! You can read it.…it tells you what activities the organization are running…and sees what you are interested in!”
Similarly, Judy had lived in an institution for children with polio for some time in her childhood. She found that that past experience had an enduring positive influence on her interpersonal interactions later on. Because the group life offered her opportunities to have contact with either impaired or non-disabled children, she felt she was not segregated because of her impairment. She described the group life in her childhood as:
When I was in the institution, the whole environment was around people such as me! When we were back to the hospital, it’s like this. But we also went to school normally! That means [pause] we had interactions with non-disabled children.
From Mary’s and Judy’s experiences of being involved in a group for people with an impairment, it can be seen they both perceived that kind of group provided an opening channel for them to make contact with people, and did not feel isolated.
Second, both Venice and Yugo had positive experiences of feeling supported by individual service workers. For example, Venice received professional assistance from a free rehabilitation service funded by the government. He described the usefulness of the physiotherapist’s help as: “We didn’t know we could exercise before… He taught me to use my feet to exercise,…I think it’s very useful!…and won’t cause us to be handicapped twice!” Likewise, Yugo was eligible to access resources for students with an impairment at school. He found the teachers in the resource room were nice and would encourage students with an impairment such as him to open their minds to ask for non-disabled students’ assistance when they were in need. He described it as: “when I was an undergraduate freshman, teachers in the resource room told us the first thing was if we really could not do something, actually schoolmates would be very enthusiastic to help us, so we shouldn’t be afraid!”
Summary
Participants identified two kinds of social relationships they experienced or perceived in their everyday lives because of their physical impairment. Some
132 participants, such as Pearl, identified more hurtful relationships than supportive ones. However, some, like Joyce and Hilda, identified two kinds of relationships existing in their social networks. Also, others such as Judy and Yugo, stated that they felt very supported in their social networks because of their physical impairment. The variation in the support they received or the hurt they felt in their social relationships would influence how they managed living their lives with their impaired bodies. This will be discussed in detail in 5.2 “Participants’ management of their lives in Taiwan”. The following section addresses the second contextual factor of participants’ perceptions of how they lived their lives: cultural attitudes towards their impairment.
5.1.2.2 Cultural attitudes towards their impairment
The second contextual factor identified by participants for their perceptions of the context in which they were living their lives was cultural attitudes towards their impairment. This refers to participants’ perceptions of Taiwanese culture and the kinds of attitudes perpetuated by this culture. In their lived experiences, most participants experienced unpleasant attitudes from non-disabled people. Pearl, Joyce, Mary, Yugo, Judy and Venice felt this way. However, a few of them, like Yugo, Mary and Judy, also pointed out that they felt more accepted now by Taiwanese culture than they had in the past. How these participants identified their perceptions and experiences of cultural attitudes towards their impairment is detailed below:
a) Rejection
Rejection means that a participant felt rejected by their culture because of discrimination experienced in their everyday social relationships. The cumulative discriminatory experiences in their social relationships (readers can also refer to the previous section for discrimination everywhere) would unavoidably lead to their not feeling accepted in their Taiwanese culture. Because participants felt that many people around them did not accept them, they perceived they were not accepted by Taiwanese culture. Hence, for participants, the accumulation of discriminatory experiences was the forerunner of feeling rejected by Taiwanese culture.
When discussing the cultural understanding of disability, participants offered examples to illustrate how they felt rejected by their own culture. For example, Pearl found many parents of non-disabled children did not accept people with an impairment because they did not allow their children to get close to people with an
133 impairment such as hers. She told of her experience of going to a supermarket: “parents will pull their children away when we are around”. Furthermore, Joyce pointed out that she also felt rejected by Taiwanese culture because the media in Taiwan made no effort to understand people with an impairment. Therefore, many of them had fewer opportunities to be understood except for those outstanding people with an impairment. She said: “The media just chooses the wonderful examples to report, such as outstanding disabled individuals…otherwise, here in Taiwan, there are many individual disabled people, both males and females, not outstanding ones, and the media doesn’t want to understand them”.
Participants felt rejected by Taiwanese culture because they perceived or experienced discriminatory treatment from it. The negative cultural attitudes towards their impairment identified by participants included feeling blamed by people’s understanding of their impairment as reincarnation and karma. They found people tended to use offensive words to name them; and they were not valued by others. Each of these is addressed below:
i) Feeling blamed
Pearl, Joyce, and Venice found people thought having an impairment was because they or their parents had done something wrong in their previous lives; their families were punished by having a member with an impairment in this life. For example, during her childhood Pearl heard her neighbours gossiping about why her father had a child with an impairment. She recalled: “When people saw him [her father], they would say: what did the man do wrong before, why does he have a crippled child!” They felt non-disabled people’s interpretation of their impairment as a punishment had the implication of attributing the faults of having an impairment to people with an impairment themselves or their families. Hence, they felt rejected by these people. For example, Pearl recalled her experience of such a rejection as a fear of approaching an impaired child like her as: “[People said] you can’t be together with her or you will be infected or get an evil spirit. Or you will become a bad child in the next life. You will become like her!” These participants did not agree with the explanation of their impairment as a punishment. Joyce said: “I don’t think I have an impairment because of my wrongdoing in a previous life!” Likewise, Venice said: “I think my handicap is not due to what we did in a previous life or karma and reincarnation!”
ii) Feeling stigmatized in language
134 Many participants also expressed how they felt rejected by the language others used. Because non-disabled people would use offensive or inappropriate words to name these participants, they felt stigmatized. For example, several participants experienced being called a cripple in Taiwanese [a colloquial term in Taiwanese but vulgar in Mandarin]. Hence, they felt non-disabled people were mocking them. Pearl stated: “If the impairment is to one’s foot as in my case, I am called a cripple [Taiwanese]…People use Taiwanese [as opposed to Mandarin] more often and use it to mock you!” Also, some participants expressed their feeling of being stigmatized by having the word ‘the handicapped’ applied to them. For example, Yugo told of how he felt uncomfortable when this word was applied to him: “Handicap in Taiwanese sounds quite unpleasant to me!” Furthermore, two participants felt stigmatized by the word ‘disability’ because they thought it had the connotation not only of a physical impairment but also a mental health impairment. Venice’s and Judy’s dialogue of their viewpoints of the word ‘disability’ illustrated this:
Venice: We don’t have problems of body and mind! Judy [sounding unhappy]: Why call us people with a disability?!
From the above, participants identified they felt rejected in Taiwanese culture because they felt stigmatized in the way that disability-related language was applied to them.
iii) Feeling inferior to others
The third reason why participants felt they were rejected by Taiwanese culture was that they were seen to be inferior to non-disabled people. For instance, Mary found her children felt inferior to others because they were mocked by non-disabled children at school because of the poor socio-economic status of their parents. This made her sad. She said: “Handicapped people’s children,…like my kids, perhaps because our family situation was [also] poorer, they were looked down upon!... I felt hurt [participant’s emphasis]!...They [her children] felt inferior to others!”
These participants identified the inferiority as being reflected in two negative social values towards them, which were seeing them as being useless, and seeing having an impairment as a shameful thing. These are detailed below:
1) Useless
135 Pearl and Venice felt they were despised because non-disabled people thought individuals with an impairment like them were useless. Pearl told of her perception of how non-disabled people saw her: “Useless! I just have one word to say: useless! This child is useless. How can she impose herself on society? Her parents have to take care of her for her whole life”. In addition, Venice believed that non-disabled people thought people with a physical impairment like him were asexual because their abilities were all impaired. He said: “the handicapped like us also give people a feeling: you are all out of ‘synch’!”
2) Shameful
Pearl and Joyce indentified the despising attitudes of non-disabled people because they saw having a family member with an impairment as a shameful thing. For example, Pearl remembered her father was worried about letting neighbours see her because he thought having such a child with an impairment was shameful. She recalled: “My father absolutely did not dare to take me outside because he felt he would lose face”. Likewise, Joyce found having an impairment tended to be seen as a shameful thing in Taiwan so a family might restrict the freedom of a member with an impairment and prevent such a person from having contact with people. She said: “they feel it is dishonorable and shameful so they don’t let disabled persons go outside, but keep them at home”.
From the above, it has been revealed that the cultural attitudes towards participants’ physical impairment made most of them experience hurt in living their lives with a physical impairment, and then led them to feel rejected and excluded by society. In contrast to this, a few participants also experienced a growing acceptance by non-disabled people in their lives. How these participants experienced and perceived the growing acceptance from Taiwanese culture is addressed below.
b) Growing acceptance
However, in addition to the negative cultural attitudes towards people with a physical impairment, three participants (Yugo, Mary and Judy) also stated that they had some promising perceptions of this because they felt they were accepted more than people with an impairment before because they had fewer stigmatizing experiences now. For example, Yugo said: “people accept disabled persons more and more!” They identified two factors contributing to the positive cultural attitudes towards them as improved social values towards impaired people and a higher education level among non-disabled people.
136 i) Improved social values towards people with an impairment
First, Yugo considered that because the social values towards people with an impairment were becoming more positive, they are accepted more by society. He said: “I definitely heard that [disabled people were useless] before! But that was an idea before! Now I can’t say it doesn’t exist, but fewer and fewer people have such an idea now!” Moreover, Yugo had even heard that some parents did not dare to live with children with an impairment because it was a shameful thing for them. Hence, they had sent their impaired children to an institution. He said that while this situation had existed in his childhood, it had become less common now for impaired people of a similar age to him. He said: “This situation still occurs in my generation,…just not so much”.
ii) Higher education standards among non-disabled people
Second, Mary and Judy identified that they experienced fewer stigmatizing experiences than before, as higher education levels had changed the way people reacted towards impaired individuals. For example, Mary found most parents nowadays would correct the impolite way their children reacted towards impaired people. She explained: “Children nowadays tease you less, it’s different! It seems that sometimes parents teach kids so they are less likely to laugh at others with a handicap”.
Summary
In this section, participants’ perceptions and experiences of cultural attitudes towards them have been discussed. To sum up, these participants identified feeling rejected much more than feeling accepted by their culture.
Following the introduction of cultural attitudes towards their impairment identified by participants as a contextual factor, the next section discusses how the other contextual factor, ‘disability legislation’, impacted on them as they lived a life with a physical impairment.
5.1.2.3 Disability legislation
Participants also identified one of the contextual factors influencing the way they lived their life with a physical impairment as disability legislation. This refers to disability-related policies in Taiwan. A few participants identified the positive
137 impacts of disability legislation on supporting their lives. However, most of them perceived the legislation as being useless in helping them to live a life with a physical impairment. These two different perspectives identified by participants are discussed now.
a) Better support
Three participants (Mary, Judy and Yugo) mentioned some aspects of disability legislation that allowed them to gain some useful resources to live their lives with a physical impairment. For example, Mary experienced the benefits that people with an impairment had never previously had, so she thought disability legislation was much better than before. She said: “the legislation nowadays is much better!”
These participants felt supported by disability legislation because they experienced some benefits such as using services for people with an impairment, having subsidies as well as feeling more accessible in their living environment as a result of disability legislation. Their positive views on disability legislation are addressed below.
i) Services for people with an impairment
First, Mary said she thought disability legislation was supportive for her because she received several services for people with an impairment to which she thought impaired people had not previously had access. For example, because of having a specialized bus for people with a physical impairment, she could go out to have fun with others. She said: “When we have a specialized bus for people with mobility difficulties, we can go out and have fun with others;…Could we do so before?”. She felt having assistive aids was a great help in her life because they enriched her social life.
ii) Subsidies
Second, Mary and Judy pointed out that they received subsidies through disability legislation which significantly helped their families to overcome the financial difficulties in life. For example, Judy said: “to educate a child until they were undergraduates was not easy! It needed the help of social welfare. Many families [with people with an impairment] depended on it for raising children!”
iii) Improved accessibility
138 Yugo and Mary also recognized the improved accessibility enabled by disability legislation in helping them to live their lives better with a physical impairment. For example, Yugo thought the accessibility in his living area was enhanced because he could use ramps to access some places without other people’s help. He said: “I think it [the accessibility] is improved quite a lot…at least I go out now, not like before when I needed people to lift the wheelchair. Now I can find a ramp”.
Some participants identified the positive aspects of disability legislation as the availability of services for people with an impairment and having financial assistance, as well as improved accessibility for them to live their lives with a physical impairment. However, many participants also expressed negative views on disability legislation as being meaningless for them. In other words, there were more critical comments than complimentary ones identified by these participants. How most of the participants identified the legislation as being useless is now illustrated.
b) Useless
All participants, except for Judy, perceived disability legislation as being useless in several aspects of their lives because they did not feel satisfied with the support they received or they felt they were not supported at all. The following are the reasons participants identified why they considered this legislation was of little use to them in helping them to live a satisfying life.
i) Limited support
Many participants considered that the legislation gave them little support in their daily lives. For example, Hilda felt the government could not provide sufficient subsidies for them to afford their living expenses. She said: “What it gives us is limited, and it can’t give us enough!” Participants explained the limited support they experienced in their lives as the following:
1) Unfair distribution of resources
First, Yugo and Joyce felt they could not access the resources provided by the legislation because they were not distributed fairly. Yugo said: “I think these [resources] haven’t been nationwide!” Joyce talked about how she could not enjoy the activities held for students with an impairment at her school the same as other students with impairment at other schools because of this. She said:
139 “other disabled students from other universities…said they had activities several times a year. Compared with that, we didn’t have any!”
2) Lack of information on available resources
Second, some participants felt disability legislation was of little help in living their lives with a physical impairment because they knew little about the available resources provided by the legislation. For example, Joyce did not know it until she worked in a disability organization. She said: “I didn’t know what resources were available until I started in this job [for people with a disability]!”
3) Bureaucracy
Third, many participants said they felt supported less by disability legislation because of its bureaucracy. Joyce mentioned several times in the interviews that she felt the government ministers’ attitudes were always bureaucratic and did not really aim to help people with an impairment. She stated: “I always think the Act is …manipulated by the upper level administrators…” Likewise, Pearl found the bureaucratic attitudes from the disability-related workers or officials made it impossible for her to get support to live her life with the impairment as she wanted to live it. For example, she said that although service providers followed the regulations to design free-access buildings for people with an impairment, there were few accessible ones for her. She said: “It is really very difficult to have a building tailor-made for us [participant’s emphasis]!” Furthermore, Pearl was not satisfied with the regulations for people with an impairment to apply for an assistive aid. She commented unhappily on this: “I think the regulations are not user friendly enough! ...For example, I need an electric wheelchair. The legislation says to buy one first and then to be reimbursed. Then I ask you: where does our money come from?” Also, because of bureaucratic regulations, Venice lost his non-disabled people’s assistance in a disability organization. He commented on this: “I think if possible, there should not be such inflexible regulations!”
Hence, these participants did not feel supported by the legislation because of bureaucracy. Thus, Joyce contended that disability legislation became a manipulative tool for the government to protect the bureaucrats but not people with an impairment. She said: “in my opinion, it is just for government officials to say that they have a law to protect themselves when they are people who understand the laws!”
ii) Employment rights not guaranteed
140 In addition to participants’ criticism of the limited support from disability legislation, many participants contended strongly that they experienced or perceived their employment rights were not guaranteed. For example, Joyce said: “I don’t think I have a guarantee of employment”. How these participants experienced and perceived their employment rights is addressed below:
First, Yugo, Joyce and Pearl pointed out that they thought their employment rights were not protected because they had fewer employment opportunities. They experienced or perceived that the employers had little intention of hiring a person with an impairment; they would rather disobey the regulations and then pay the penalties. Pearl commented on the attitudes of an employer towards hiring an employee with an impairment. Pearl said: “if the employers don’t follow the quota, they would rather pay the penalties than hire us!” In addition, the legislation did not provide strong sanctions in the aspect of fining the employers who did not follow the regulations. Yugo told of his perceptions on this: “it seems the government doesn’t clamp down often!”
Second, Venice, Mary and Pearl argued that they did not feel their employment rights were guaranteed because there were many inequalities at work. For example, Mary described herself as low-cost labor in her workplace. She was infuriated: “I am low-cost labor!”
In addition to the inequalities in treatment at work, Venice and Pearl particularly identified the inequality in running a lotto shop. For example, Pearl thought initially the government tried to provide employment opportunities for people with an impairment via selling lotto. In fact, she found they were not managed by people with an impairment but by many non-disabled people. She said: “the lotto is set up, and the government just hopes disabled people have one more choice to earn their livelihood. But I don’t know whether you find non-disabled people running the shops?” Thus, these participants did not experience or perceive their employment rights as being protected by the legislation in their lives.
Summary
In this section, participants identified how meaningful disability legislation was for them in living their lives with a physical impairment in Taiwan. Although some provided positive comments, apparently criticism was more common than compliments.
141 Figure 5.2 depicts participants’ lives in Taiwan. It includes participants’ perceptions of themselves in living a life with a physical impairment and their perceptions of the context in which they were living their lives.
142 Perceptions of the context in which they were living their lives
Social network Perceptions of self on living a Disability legislation life with a physical impairment Cultural attitudes towards their impairment Living with an impaired body
Dealing with the mind
Dealing with the need for support
Figure 5.2 Participants’ lives in Taiwan and associated themes
143 5.2 Participants’ management of their lives in Taiwan
The previous two sections have described how participants saw their lives in Taiwan. This included how participants perceived themselves in terms of living a life with a physical impairment and what their lives were influenced by in the context of where they were living their lives. Locating these participants in Taiwan presents what their world or what their being-in-the-world was like, such as feeling hurt, feeling supported or a combination of hurt and support from people because of their impairment. This section discusses how they managed their lives in Taiwan.
The degree of support or hurt perceived and experienced by participants in their social world would influence their choices of strategies to manage their lives with a physical impairment. Participants identified three strategies they adopted in life. These were:
- Building the fortress - Fostering support - Fostering the mind
It is not claimed that participants used only one particular strategy to manage their lives; however, those who perceived and experienced more hurt tended to build a fortress in their lives. As for those who perceived they needed others’ support, they were liable to foster support from their social world. In addition, Venice pointed out a specific strategy of fostering his mind in living his life with an impairment.
Table 5 (see Appendix 18.) depicts related categories identified by participants for their management of their lives in Taiwan.
These three strategies are detailed below:
5.2.1 Building the fortress
The strategy of building the fortress was identified by Pearl and Joyce. A fortress means providing a strong protection from hurt and a sense of security. For example, Pearl’s home was her fortress, providing protection for her. She explained: “this is my last protection [participant’s emphasis] here!” Hence, she felt safe to stay there so that she could create a world she wanted at her own place. She said:
144 Decorate my place with flowers or something. Although I can’t decorate it as beautifully as others, in my thoughts at least I can have the world I want because in my heart I hope to have a place full of flowers.
These two participants ‘built a fortress’ to protect their impaired bodies and their fragile minds from hurt so that they could live safely in their environment. In addition, they also mentioned the specific situations of letting down the drawbridge to the fortress. These are addressed now.
5.2.1.1 Protecting the impaired body
Both Pearl and Joyce built a fortress in order to keep their impaired body safe. They talked about using the fortress as a means of preventing the worst situations from happening which might harm their body, and also a means of creating a safer physical space for them to move around.
a) Imagining the worst case scenario
For example, Joyce told of her desire to participate in skiing, but she was afraid her foot might get hurt because of this. Hence, she stopped undertaking any dangerous actions which might lead to further injury. She said:
I really want to go skiing but if I go, I could be very miserable. If it really gets frostbitten, I might need to have it amputated. I am scared. I don’t know whether it would happen, but I imagine the worst case scenario.
Similarly, Pearl was concerned about many problems when she went out with her electric wheelchair, such as lacking assistance from people. She said this: “People like me, if we want to go outside with our wheelchairs, we worry about many problems we might face. For example, if our electric wheelchairs broke down on the street, who would help us?” Hence, because of her worry about whether support would be available, she did not go anywhere so as to keep her impaired body safe. She concluded: “I don’t have places to go”.
b) Finding more space for easier mobility
Joyce also built a fortress to protect her impaired body so as to resolve her mobility difficulties. She recalled why she chose the art class when she was a junior high school student because she could get more classroom space in a class with fewer students. She spoke of this:
145 I was in the arts class not because I loved art. That was because the number of people in the arts class was less than in the general ones. We only had 30 people then. The same classroom with only 30 students had more space so that it’s easier for me to move around.
5.2.1.2 Protecting the fragile mind
Not only did they building a fortress to protect their impaired body, Pearl and Joyce also built it in their social world to protect their fragile mind, i.e. they were afraid of getting hurt. Pearl said: “I have to be careful and wary of the possibility that people might hurt me!” Likewise, Joyce described her fear of getting hurt as: “Being a disabled person I would keep my distance from other people …I would draw a boundary, not allowing other people to get too close because I am afraid of getting hurt”.
These two participants indicated they built their fortress in two directions. These were building the fortress within themselves (inward) and against people around them (outward) so that they kept their distance from other people to prevent themselves from getting hurt. These aspects are described below:
a) Inward
Both participants identified several ways of building the fortress inward into the deeper areas of their heart. They detailed the following:
i) Isolating oneself
Pearl and Joyce identified one way of building the fortress as being alone rather than having contact with other people. Pearl said: “I can’t face crowds, and I like to be alone”. Likewise, Joyce told of her dislike of contact with people as: “I didn’t like to have contact with people too much and didn’t like to talk to people”. In these instances, they kept the fortress in place so as to isolate themselves as a means of managing their social relationships.
ii) Avoiding thinking of the hurt
Both participants indicated that they built the fortress to avoid recalling the hurt they had suffered throughout their lives from their disablement. For example, Pearl avoided recalling and she tried to forget the hurt in her past. She said: “I deliberately don’t recall the past because the past was a very agonizing time for
146 me… I try to forget it all the time!” For Joyce, she was vulnerable with the identity of being a person with an impairment. Hence, she tried to avoid thinking that she was a disabled person. She described this situation:
Compared with everyone else, I just have some problem. But there is no really big difference so that I have to remind myself all the time, and to feel that I am a disabled person. So, I think I avoid it and ignore it on purpose…
iii) Comforting oneself
The fortress each participant had constructed also served the purpose of helping the participants to comfort themselves when they got hurt. For example, Pearl told of how she made herself recover from getting hurt at work: “I tell myself all the time: because you are not me….I am the person experiencing it, and no one can live the same life as me. This is my experience of life, and gradually I can comfort myself naturally”.
iv) Suppressing one’s feelings
Both participants built the fortress to suppress their true feelings but not to tell people how they thought and felt in fact. For example, Joyce said: “When I am outside, I have to control myself not to say unnecessary words. …Although what he said is very annoying, no, I still have to suppress myself to let him finish talking”.
b) Outward
In addition to constructing an inner fortress to protect their fragile mind, both participants identified two ways of building the fortress outward against people. They detailed these as follows:
i) Not trusting people
Pearl and Joyce constructed the fortress against people because they did not trust people easily. For example, Joyce talked about how she dealt with her relationships with people on the Internet: “my personality is quite strange, even on the Internet I am very cold, not enthusiastic with other people... I’m defensive and don’t trust people”. Likewise, Pearl told of how difficult it is to break down her fortress to accept people: “Someone told me if people want to gain my trust, it can’t be achieved in one or two years!”
147 ii) Hiding the real self
Both participants described how they used the fortress to hide the real self in social relationships. Pearl managed her fortress to look strong in front of others to defend herself. She described how she hid her fragile mind in the workplace: “I prefer to go to work just as an ordinary thing, and I don’t want to show my weakness. For example, if I want to cry today, I won’t cry in front of you”. For Joyce, she might hide her real personality in front of others. She explained: “I act timidly on the outside, not full of aggression”.
C) Letting down the drawbridge to the fortress
Pearl and Joyce revealed that they constructed the fortress to protect their impaired body and fragile mind in the context in which they lived. Additionally, both of them spoke of letting down the drawbridge in working relationships. Letting down the drawbridge to the fortress refers to the strategies used where they considered that they had no choice but to come out of the fortress in their need to gain support for living their lives with the impairment. But they still retained the fortress. For example, both participants considered it very important to have a job so that they could feed themselves. This motive pushed them to let down the drawbridge. Pearl explained:
People say: You go to work with an electric wheelchair, how come? Don’t people with an electric wheelchair stay at home? You go out with it, isn’t it very dangerous? They think I am very brave, but I have no choice! If I don’t work today, who will take care of me? That’s the point [participant’s emphasis]!
Similarly, Joyce said: “to have a job and I am able to feed myself”. Hence, although she encountered difficulties at work, she chose not to give up easily. She said: “I think it was so difficult for me to get this job…I just have to make few compromises to adapt to it, and then I won’t have to confront finding another job”.
Thus, it can be seen that having a job and keeping it were critical for Pearl and Joyce to live their lives with the impairment. They identified two strategies of letting down the drawbridge to the fortress for this purpose. These are described below:
i) Covering up fear
148 To let down the drawbridge to the fortress was not easy for Pearl and Joyce because first they had to overcome their fear of the things they did not want to face. Pearl talked about how she crossed her fear to look for a job alone. She said: “I braced myself to look for a job alone, and no one came with me, no one!” Likewise, Joyce was afraid of doing certain work tasks at first, such as the home visits. However, when she found another new colleague who could do it independently, she suddenly broke through her fear to learn how to manage these home visits alone. She said:
Speaking of the home visit … in the beginning I was very scared and I didn’t know what to do… I hesitated at first so that I couldn’t step out by myself. Because of the trigger point, I suddenly leaped out and I could do that by myself!
ii) Fitting in
Joyce let down the drawbridge to the fortress so as to learn to fit in at the workplace. She said: “I didn’t want to change in the beginning, but because of the need to survive in the working environment, I had no choice but to do so”. For example, she learned to tell a lie after she started to work. She spoke of her change:
Maybe you would think telling a lie is very bad before, but after working you would find you cannot help telling a lie!….That means you might need to make some changes and then you can adapt yourself to this society.
Summary
This section has detailed how Pearl and Joyce built the fortress to protect their impaired body and fragile mind, why and how they let down the drawbridge to the fortress in working relationships. It is necessary to emphasize that ‘building the fortress’ was a strategy that these two participants often used in their social world but not the only one. The next section discusses the other strategy for managing living a life with a physical impairment as identified by participants.
5.2.2 Fostering support
Most of the participants indicated that one way they lived their lives with a physical impairment was by fostering support. This refers to their strategies for gaining support in the context in which they lived their lives. They identified three
149 types of strategies for this. These were: ‘seeking out support’, ‘maintaining harmony in relationships’, as well as ‘ensuring sustainability of support’. Each of these is described below:
5.2.2.1 Seeking out support
Participants identified a series of strategies for seeking out support from the context in which they lived their lives. These are addressed below:
a) Overcoming difficulties by oneself
First, some participants mentioned how they fostered support by themselves, i.e. they tried to overcome the difficulties they faced by themselves first. This strategy was identified by Mary, Yugo and Judy. Mary said: “For difficulties, you should overcome them [participant’s emphasis]! To do so by oneself!” Likewise, Yugo told of how students with an impairment including him raised the money for activities for them after the budget was cancelled. He explained: “we [students with an impairment] raised funds for it! Such as the money from the school carnival…or we paid for it”.
b) Sensitive observation
Second, being sensitive to people’s reactions towards them was also helpful for participants to successfully foster support from others. For example, Yugo observed people’s expressions sensitively and sharply so as to adjust his interactions with them. He explained: “I am quite good at observing people’s expressions… At first, I chat with them. During our talk, I also observe what kinds of people they are”. Then, Yugo might know to what extent he can expect support from people.
c) Asking for help
A frequent strategy to foster support identified by many participants was to ask for help. For example, Yugo talked about how, after receiving encouragement from the teacher in the resource room, he began to open his mind to ask for peers’ assistance in many aspects of his school life. He said: “at that time I started to open my mind! And I started to ask for my schoolmates’ help quite often”.
d) Fighting for support
150 Sometimes participants might not be satisfied with the support they had or they felt uncomfortable with the discrimination they faced in their lives. Then, they might argue for support. For example, Mary and Yugo identified using social protests as a way to fight for rights for people with an impairment. Yugo said: “My experience is I think that society indeed discriminates against us to some extent. And then we strive for our own rights by social protests”.
e) Compromising to retain support
In order to get support from some relationships, sometimes participants had to accept hurts from these relationships in order to retain the support they wanted or needed. For example, although Mary suffered unfair treatment at work, she did not think about giving it up because having a job was important to her. She said: “to do things quickly…to have less money, we still have to work …It’s better to have a job than nothing at all!”
5.2.2.2 Maintaining harmony in relationships
Many participants indicated that maintaining harmony in their social relationships was an important way to foster support. If they maintained good relations with people around them, they would not jeopardise support providers’ willingness to keep offering support to them or to have more people happy to help them.
Participants mentioned two types of strategies for maintaining peaceful relationships. They were self-reflection to adjust their personalities and attitudes towards people (inward), and how they behaved towards others (outward). These are discussed below:
a) Inward
Several participants indicated that one of the ways of fostering support was to prepare themselves to be ready for support first, such as by adjusting their personalities or attitudes towards people. These strategies identified by them are now illustrated.
i) Being optimistic
Yugo and Mary thought having an optimistic personality was helpful for keeping good social interactions with people. For example, Yugo said: “I am quite optimistic so my relations with others are really not bad!” Being optimistic made
151 people feel they were easy-going and not so vulnerable to hurts, so people would like to be with them. Then, it was easy for participants to get support from people around them.
ii) Reflective insight
Another strategy to keep harmony in participants’ social networks was reflective insight of why people hurt them. For example, Mary understood her physical disadvantages at work so she could accept the unequal treatment and then keep working. She said: “People have already given you the opportunity, what more do you want [participant’s emphasis]!”
b) Outward
Some participants mentioned how they acted towards people so as to keep peaceful relations with them. Yugo, especially, detailed how he fostered support in such a way.
i) Easy to get along with
First, Yugo would make people feel he was easy to get along with. He talked about his friends’ impression of him: “they’ve all told me: you are easy to get along with and you are very friendly”. He said: “When I go out, I smile and then when I see people, I say hello to them”. And he was willing to communicate with friends. He said: “if they have any complaints about me, I hope they can tell me directly, it’s ok”.
ii) Not bothering others too much
Second, although having others’ support was important for many participants, they mentioned they should not let people feel helping them was troublesome, so that the support from others could be sustained. For example, Mary reflected on her viewpoints of how to maintain good social relationships. She thought seeking others’ help at the right time was necessary for keeping good relationships. Therefore, she thought people would be willing to provide assistance to them for a longer time. She described her experience of this in the previous workplace: “asking for help, we need to say it early because we can’t ask for it when people are busy at work…so that they don’t feel that the request is troublesome”. Similarly, if Yugo found it was not convenient for people to take him out, he would not force them to do so. He said: “If it’s not okay for them, it’s fine and then I
152 won’t go out”. It is apparent that these participants would try not to displease their important supporters so that they could maintain the support.
iii) Reciprocity
Third, Yugo mentioned another way to keep good relations with his friends. It was reciprocity. This means that because Yugo needed his friends’ assistance in life, he also gave them assistance where they needed it. He explained: “they help by running errands for me and lifting me in and out of the car. And I help them with their assignments”.
5.2.2.3 Ensuring sustainability of support
Most participants perceived a lack of support in their lives with a physical impairment (see 5.1.1.3 Fear of unavailability of support in their lives). As a result, how to ensure sustainable support in the future was an important issue in their lives. Six participants (except for Pearl who did not intend to plan her future) identified two types of strategies they had adopted to make support available throughout their lives. These were being able to support themselves and investing in more valuable relationships. Each type of strategy to foster sustainable support to live a life with a physical impairment is detailed now.
a) Making sure one can support oneself
Several participants revealed that they used three strategies to be able to support themselves. They were: learning to take care of themselves independently, and being careful with money because they would need it in the future; in addition, Venice explained that he did not want to marry so that he could keep more support for himself. Each of them is illustrated below:
i) Learning to take care of self independently
Joyce, Venice and Yugo tried to learn how to take care of themselves independently so as to extend the sustainability of support from themselves. Because all of them were aware of the impossibility of having sustainable support in their social relationships with people to take care of them for all of their lives, they learned how to face their lives in the future independently. For example, because Venice realized it was impossible to have a non-disabled person to take care of him for a long time, he worked out how to handle the activities of daily life by himself. He explained: “From my standpoint, the most important thing is that
153 I am able to take care of myself! [Therefore] I trained myself, after a shower, I had to wash clothes…I learned to cook, and did it well”.
ii) Careful with money
Second, several participants like Joyce, Mary, Yugo and Hilda, were careful with their money so as to be able to support themselves for longer in the future. For example, Joyce did not spend much money on buying expensive clothes because she needed to keep some money for the future. She explained: “I think wearing…wearing…good quality clothes but not expensive, the high fashion of the common people is fine. The money I save can be used to plan my future!”
iii) Not getting married
Venice thought another way to be able to support himself longer was not to marry so that he did not need to share his resources with others. He explained: “If you can’t take care of yourself first but you need to take care of your wife and children, won’t you be tired? ... In that case, it would be best to keep living alone”.
b) Investing in beneficial relationships
Yugo, Mary and Judy indicated that a way of ensuring sustainable support from others was investing in the relationships which they thought worthy of development. For example, Yugo gave up working on having an intimate relationship but devoted himself to developing his friendships. He said: “even if I try hard to get a girl friend, it will be a fruitless investment. So it would be better to invest in more beneficial relationships with other people”.
On the other hand, unlike Yugo, Mary and Judy thought having an intimate relationship was supportive for them; hence, they chose to marry. Mary married a man with an impairment for mutual company. She said: “the handicapped marry the handicapped, and they accompany each other”.
Summary
As for living a life with a physical impairment, participants identified three ways of fostering support: seeking out support, maintaining harmony in relationships and thinking about how to ensure the sustainability of support from the context in which they were living their lives. In addition to this, one participant (Venice)
154 described how he fostered his mind to live his life with a physical impairment. This is addressed in the next section.
5.2.3 Fostering the mind
Participants reported that they built a fortress or fostered support to live a life with a physical impairment. In addition, Venice pointed out the other strategy that he used to manage living his life with a physical impairment was fostering his mind. Because he believed the important thing in one’s being was to have an intact mind, no matter how impaired the body, this belief led him to foster his mind to live his life with an impairment. He said: “I think after people are born, the important thing is their spiritual life. As for one’s body,…not everyone is necessarily complete! The most crucial thing is the completeness of one’s mind. That’s important!”
Venice used two inter-related strategies to foster his mind. These were his self-reflection on the meaning of his impairment and then thinking about how to figure out the difficulties brought about by it. These are discussed now.
5.2.3.1 Self-reflection on the meaning of having a handicap
Venice thought the significance of having an impairment to him was to reflect upon himself. He recounted: “If my handicap was important to me, it should be my own self-reflection [participant’s emphasis]”. Because of his reflection on the meaning of being a person with an impairment in his life, three major positive ideas10 emerged from this.
First, compared with non-disabled people, Venice found that having an impairment assisted him in thinking more and doing more to resolve the difficulties brought about by it in his everyday life. He said: “Since we have been handicapped and our feet have problems, we have more opportunities to think more and then do more instead!”
Second, Venice did not see having an impairment as a deficiency in his life, but rather as something which influenced his mobility. He explained: “A handicap is not necessarily a defect in life [participant’s emphasis]…a handicap for me… just means my feet are unable to stand and allow my hands to take something at a high level”.
10 Because Venice was the only one participant who addressed a lot on fostering his mind, there will be some repetitions in the mind man’s story (also see Chapter 8).
155 Finally, Venice perceived having an impairment as not a terrible thing in his life. Indeed, if he had healthy feet, he might go out to show off and then commit a crime and be put in a jail. On the contrary, because of having impaired feet, he would just do things which he was competent for. He expounded:
Because of having a handicap, we have difficulties! I think that’s not bad! At least with [unimpaired] feet , …I might go out everywhere and then show off...I might do…something bad…And then today I know my ability is worse than others! …So I just do things I am equal to…So I would say: if my feet were good today, I might have been in jail for a long time!
5.2.3.2 Breaking through the handicap
Venice’s reflection on the meaning of being a person with a physical impairment influenced how he wanted to manage living his life with it. Venice saw having an impairment as an irreversible reality. Therefore, he thought making an effort to cure it was impractical. The more sensible management was to break through the difficulties brought about by the impairment. He said: “Although I have difficulties in my feet, my hands are ok and my thinking model is also very good and normal! And then when I do anything, I will figure it out to break through!”
This section has introduced Venice’s approach to living his life with a physical impairment through fostering his mind. Through his interpretations of the meaning of having an impairment, he came to understand how he should manage it.
Summary
The above section has described three ways of managing living a life with a physical impairment as explained by participants. These were building the fortress, fostering support, and fostering the mind. Participants may use more than one of these strategies in their daily life. Also, it does not mean that participants always used some specific strategies. However, they showed a tendency to use their preferred management strategy, and their decision-making was influenced by their sense of the well-being of their body and mind in the context in which they were living their lives.
Figure 5.3 illustrates participants’ management of their lives in Taiwan and associated categories.
156 Perceptions of the context in which they were living their lives
Perceptions of self on living a life
with a physical impairment Social network
Living with an impaired body Disability legislation
Dealing with the mind Cultural attitudes towards their impairment
Dealing with the need for support
Participants’ management of their lives in Taiwan
Figure 5.3 Participants’ management of their lives in Building the fortress Taiwan and associated categories Fostering support Fostering the mind
157 5.3 Outcome of participants’ management of their lives in Taiwan
The first two sections above described how participants perceived themselves in terms of living a life with a physical impairment and situated their lives in the Taiwanese context. This has presented their everyday life in Taiwan. Following that, participants identified three ways of managing their lives: building the fortress, fostering support, and fostering the mind. They might not choose only one of these methods to deal with their lives. However, they had some specific tendency to use a particular strategy in their lives. Hence, the outcome of their managing living their lives with a physical impairment could be grouped into the following:
- Continuing to build the fortress - Continuing to foster support - Continuing to foster the mind
From the interview data, it can be observed that the outcome for Pearl and Joyce living their lives with a physical impairment was continuing to build the fortress; for Yugo, Judy, Mary and Hilda it was continuing to foster support; and for Venice it was continuing to foster his mind. These participants can then be located in three groups accordingly, named as ‘fortress ladies’, ‘social networkers’ and ‘the mind man’. In the following three chapters, ‘it is more than just the impairment’ will be applied to present each of their stories.
Now, the outcome of their management of their lives in Taiwan is illustrated below. Also, Table 6 (see Appendix 18.) shows related categories identified by participants for this.
5.3.1 Continuing to build the fortress
Pearl and Joyce chose to live their lives with a physical impairment by continuing to build their fortress in their world. For example, because Pearl got hurt so much in living her life with the impairment, her perception of the rest of her life was one of living with loneliness. She did not care too much about having people’s company. She illustrated her understanding of life as: “my experience of life is whether having people with you is the same, people come to the world with nothing and they leave with nothing”. As a result, these two participants continued building the fortress to keep their distance from others. Their continuous construction of the fortress resulted in two outcomes in their social
158 relationships. These were self-imposed social isolation and hurts resulting from letting down the drawbridge. These are described below:
5.3.1.1 Self-imposed social isolation
Both participants lived in their fortresses, which resulted in a ‘self-imposed social isolation’. That means that they kept at a distance from people and they were both wary of getting hurt in social relationships. Hence, Pearl said: “Actually I have a thought: I don’t need friends!” Similarly, Joyce said: “I don’t like to have contact with people too much!”
Interestingly, although these two participants tended towards continuing building the fortress to live their lives with the impairment, they set different criteria for who could be in the fortress with them.
i) Alone
For Pearl, she was the only one who could stay in her fortress. She lived alone and told of her unwillingness to have visitors to her place. She said: “since I moved in, I have refused to have any visitors!” Because of her fear of getting hurt, Pearl indicated she kept the fortress fortified and refused entry to anyone.
ii) With family
On the contrary, Joyce was not the only one who lived in the fortress she built. For her, she accepted her family to live in the fortress with her because she received strong support from them, such as being protected well like a delicate peach. She described her feelings on having good family support and her attitudes towards her family as:
I really feel I am very very lucky [to have such a family]. Although I am very lucky [to have such a family], I am still very wilful [to them]. I won’t be very polite or show good manners to my family.
5.3.1.2 Hurt resulting from letting down the drawbridge to the fortress
The outcome of letting down the drawbridge to the fortress resulted in hurt again because the fortress was a sanctuary where they found relief from the outside world. For example, Pearl let down the drawbridge to the fortress to look for a job and she experienced considerable hurt from doing so. She described the hurts
159 such as the unwillingness of the employers to hire a person with a physical impairment. She said: “when they saw you, they just shook their head and said: if we need you, we will call you”. Also, Joyce talked about the hurt from her difficulties in fitting into the workplace: “because I really don’t like telling a lie, I would find it quite…quite difficult to adapt”.
Consequently, the self-imposed social isolation and letting down the drawbridge to the fortress led to the accumulation of the fortress ladies’ hurtful experiences. Hence, it would result in their perception of having a fragile mind again because of their impairment. This iterative process occurred in their lives in Taiwan and their stories will be illustrated by ‘it is more than just the impairment’ in Chapter 6.
5.3.2 Continuing to foster support
Because of needing support, Yugo, Judy, Mary and Hilda perceived that they needed to continue to foster support in order to live their lives with a physical impairment. How these participants told of their need for support and the outcomes of continuing to foster support for them is detailed below:
5.3.2.1 A contented social networker
Judy felt she did not need a good material life but wanted to live with ease. Hence, she found she was easily satisfied with what support she had now. She described her personality: “I am very easily contented!” Thus, Judy was described as a contented social networker.
5.3.2.2 An active social networker
Yugo told of his need to have others’ support such as friends in his life, so he had to maintain good relations with people. He said: “Because I have mobility difficulties, I need friends’ assistance in my life. Hence, positive interpersonal interaction is very important to me”. As a result, he kept broadening his social network by using good social skills. He said: “to make friends can broaden my view and I can contact friends with different personalities. Through the interaction, it not only lets me learn others’ strengths but also increases my experiences in interpersonal interactions”. Hence, Yugo was defined as an active social networker for fostering the support he needed.
5.3.2.3 An anxious social networker
160 For Mary, she was suffering a significant loss of support for herself and her family because of the influence of her aging, the death of her husband as well as her children’s growing into adulthood. Therefore, she was worried about the availability of support to live her life with the impairment in her future. She told of her fear of being alone at home when she felt uncomfortable and sick: “If no one is here, what should I do!? [sounding anxious]”. Thus, Mary was defined as an anxious social networker who was eager to have others’ support.
5.3.2.4 A hapless social networker
Hilda had a serious impairment resulting from a spinal cord injury, and her family was suffering great financial difficulties. She described her family situation as: “We don’t have money… It’s very miserable!” Hence, she could only wish for others’ assistance. She told of her wish: “Have meals to eat, help us more or less to overcome the difficulties, otherwise what should we do?” However, the outcome was she felt the support she had was seriously lacking and she had become a burden to her family. Thus, Hilda felt despair and anguish. She said: “To live everyday is to wait for death. If I had died at the time when I got hurt, it wouldn’t cost so much money!” Therefore, Hilda was defined as a hapless social networker who felt hopeless and frustrated with the support she had.
The result of continuing to foster support made these four participants become social networkers with distinctive characteristics. The outcome would influence how they perceived to what extent their need of support was met, and then had effects on their management of their lives in Taiwan. ‘It is more than just the impairment’ tells the iterative process in their lives, and their stories will be further illustrated in Chapter 7.
5.3.3 Continuing to foster the mind
5.3.3.1 Superior mind
Venice saw fostering his mind as the most important thing in his life. He said: “I think after people are born,…The most crucial thing is the completeness of one’s mind”. As a result of continuing to foster his mind, he saw himself being able to rely on his mind rather than on any religions. He described himself as: “I am God”. Thus, Venice had a superior mind and he used his impaired body as a tool to strive for self-actualisation. Therefore, Venice was categorised as a mind man living his life in Taiwan. Readers can refer to Chapter 8 to see his story depicted by ‘it is more than just the impairment’.
161 Summary
This section has addressed the outcomes of participants’ management of their lives in Taiwan. They were continuous construction of the fortress, fostering support constantly and continuing to foster the mind. The three different outcomes would have various impacts on their perceptions of themselves and their everyday world for living their lives with a physical impairment. Continuous construction of the fortress, for example, would lead the participants to live a lonely life because of their self-imposed social isolation and they would then be liable to experience more distressing relationships in their social world. As a result, it would influence a participant’s perception of her mind as one which was easily hurt. Again, it repeats the iterative process of the interactions of the themes in the theory of ‘it is more than just the impairment’. Figure 5.4 depicts the outcome of management of participants’ lives in Taiwan and the iterative process of ‘it is more than just the impairment’.
The following three chapters will use ‘it is more than just the impairment’ to portray participants’ lives, revealing the dynamism and complexity of living a life with a physical impairment.
162 Perceptions of the context in which they were living their lives
Perceptions of self on living a Social network life with a physical impairment Disability legislation Living with an impaired body Cultural attitudes towards their impairment Dealing with the mind
Dealing with the need for support
Participants’ management of their lives in Outcome of participants’ management of their Taiwan lives in Taiwan Building the fortress Continuing to build the fortress (Fortress ladies) Fostering support Continuing to foster support (Social networkers) Fostering the mind Continuing to foster the mind (The mind man)
Figure 5.4 The outcome of management of participants’ lives in Taiwan and the iterative 163 process of ‘it is more than just the impairment’ CHAPTER 6 FORTRESS LADIES
“Fortress” is a powerful metaphor for providing protection from hurt. It vividly expresses the powerful images of self-defense pervasive in Pearl’s and Joyce’s accounts of living their lives with their impairment. For this reason, the metaphor of the fortress is used in the study to illustrate their management of their lives in Taiwan.
In this chapter, each of the fortress ladies’ stories is illustrated by the developed theory “it is more than just the impairment” respectively. Following that, the commonalities and differences between the two participants will be discussed.
164 6.1 Pearl in an orphan fortress: “I was like an orphan”
6.1.1 Pearl’s life in Taiwan: “I have lived in tears all my life!”
Pearl described her more than 30 years of living with her impairment as experiencing many difficulties. She said: “How much pain and how many trials and hardships I have lived through, how lonely I have been going through these by myself”. She said her life was full of tears: “I have lived in tears all my life!”
Her impaired body
From her own perceptions of herself of living with an impaired body, she experienced living with pain and often felt uncomfortable because of the influence of her deformed body and aging. In winter, she felt especially uncomfortable. Pearl knew her impairment was incurable. Her physical situation depressed her. She described her feeling as: “We often experience pain for some unaccountable reason, and no one can understand why! Such as this winter, I don’t know whether
I can bear it. I feel dispirited”.
In addition, Pearl experienced many difficulties in moving around in her life. Something easy for a non-disabled person might be a challenge to her. For example, getting up from the bed would make her tired. She said: “like turning my body over and then sitting up everyday, it’s very laborious!” Or having some sugar in the tea, she needed to handle it carefully. She explained: “Lifting the spoon up, my hand needs to keep still…because my strength is not enough and my hand will tremble, the sugar might spill”. She found people without a physical impairment could move their bodies freely so that they could not understand her difficulties. She said: “others don’t understand that moving is not easy for me!”
Her fragile mind and pervasively hurtful experiences
In addition to having an impaired body, Pearl perceived she had a fragile mind because of being a person with a physical impairment. She said: “Of course, there are people with disabilities whose minds are very fragile, including me. I also have a very fragile mind”. Pearl felt uncomfortable with such an identity because she envied the good social relationships and easy mobility of so many non-disabled people which most of those with an impairment like her could not aspire to. She said: “Because we definitely have barriers in our mind, because our interpersonal relationship can’t be as good as some people’s! Because we envy your ability to walk and wonder why can’t I? We do, we feel uncomfortable!”
165 In addition, the other important and related cause of her fragile mind was from the continual hurt she encountered from the context in which she lived. Pearl described the influence of having hurtful experiences in her life; she said: “when I need to say something, I have to be careful and wary of the possibility that people might hurt me!”
Several examples of Pearl’s hurtful experiences are given to explain her thoughts and feelings which have long been undermined by pervasive disablement from her social network, cultural attitudes towards her impairment, and the lack of support from disability legislation.
When Pearl was a child, she had lived in an institution for children with an impairment for most of her childhood. She had suffered abuse from some staff there. She recalled the horrible experience of the way the teacher disciplined her: “I was an abused child there. I was hit and dragged from the wheelchair to the ground and made to drink urine!”
After living in the institution, Pearl had seldom gone home because her mother would abuse her. She described how her mother ill treated her: “she clenched her fist and then hit me, scolded me or kicked me”. As a result of Pearl’s impairment, she could not avoid the hit but just felt terrified sitting in the wheelchair. She recalled such a fearful experience in her childhood and said: “I could just sit there and was frightened. Some abused children still can hide in the corner, but I didn’t have the ability to hide in a corner [Pearl’s emphasis], can you imagine that situation?” Hence, Pearl felt she was like an orphan. She said: “I was like an orphan, and I couldn’t go home!”
When Pearl was an adult, she felt she had no friends. She explained: “In my heart, I feel friends are far away from me. I don’t have friends”. Pearl found that among the people around her, such as her colleagues or service providers, no one would listen to what she said. For example, Pearl got hurt because she found the service providers did not understand what she really needed. They appeared to be listening but only did their routine professional work for her. She said:
The social workers go to our houses to visit us …or someone makes us do the rehabilitation. But we do not necessarily need these very much. What do we want? I have told you we need people who listen to us!
166 Hence, Pearl felt disappointed and lonely that in her life she had no listeners. She concluded: “In my life, I can’t find someone to listen to what I say [Pearl’s emphasis]!”
In addition to her disappointment that service providers failed to listen to her, Pearl also felt they did not understand her at all. She thought that as these people did not experience living with an impairment, they could not really appreciate her situation and her worries. She explained:
they [service providers] have their profession, but in their profession they are not us. We have experienced our life situation ourselves, but they just want to know our physical condition. When I tell them how I feel today, they cannot experience how uncomfortable I am or what I am so worried about!
Furthermore, Pearl felt hurt because the service providers had power and control over people with an impairment and thus they lacked sympathy towards their service users. For example, she found that service providers like physiotherapists seldom cared about how she felt when she did the rehabilitation exercises. She said: “when they are doing physiotherapy on us, do they ever really listen to how we feel? When they make me do their exercises, how do I feel?”
In addition to getting hurt at various stages of her life, Pearl also experienced pervasive hurt all the time from the culture and disability legislation. She felt the cultural attitudes towards her were not friendly; in fact she felt rejected by Taiwanese culture. For example, Pearl told of people seeing her impairment as being contagious or as a punishment for doing something wrong in her previous life. Hence parents would not allow their children to approach her and people looked down upon her family. However, Pearl felt their understanding of her impairment was wrong because she experienced living with the impairment as living with pain, which was different from non-disabled people’s views. She fought against such cultural understanding of her impairment as: “We often experience pain for some unaccountable reason, and no one can understand it!... In Taiwanese culture, they don’t understand. They think we are contagious or we did something in a previous life. They are wrong!”
Because of the stigmatizing attitudes of non-disabled people, Pearl had many hurtful experiences of being discriminated against. For example, Pearl found that even on the Internet, she could not make friends because they did not want to make friends with an impaired person. She explained this: “still some people on
167 the Internet know I am disabled and then they don’t send any more messages. They said you are a cripple! It makes me feel very hurt and very sad!”
Additionally, Pearl felt she did not get support from disability legislation to help her to live her life with her impairment because she encountered many difficulties in finding a job that she could access. When looking for a job, Pearl reacted angrily about her experience of seeking assistance from the employment department of the government. She said: “The employment counselling centre made me dissatisfied!” Because she worried about the accessibility issue in a potential workplace, she asked the staff what it looked like before she applied for a job, and they responded to her in a negligent way and made no attempt to alleviate her concern. She recalled this unhappy experience:
The staff said: people with disabilities are needed there, and you can have a look first. And then I kept asking what the environment was like there? The staff told me: you don’t go there to have a look and see whether you like it first, if I did so for you, isn’t it in vain? I was very sad!
As for accessibility in the community in which she lived, Pearl perceived disability legislation did not help her with this because she had considerable difficulties in accessing public places. For example, she said she could not go to a bookstore or a movie that many non-disabled people took for granted. She said:
It is really very difficult to have a building tailor-made for us [Pearl’s emphasis]!... And if we want to go to a bookshop, the width of the door is too narrow for our wheelchairs to go through or the doorstep is too high so that you can’t access the bookstore. For example, I want to go to a bookshop but I have never been to a bookshop, never! People like you sometimes go to a movie, but for me, it’s impossible!
Furthermore, Pearl criticized disability legislation as being too bureaucratic. She said: “I think the regulations are not user friendly enough!” Pearl mentioned that when people with an impairment wanted to apply for an assistive device, they had to pay for it first and then got reimbursed. She questioned how many people with an impairment like her could afford an expensive electric wheelchair. She said: “where does our money come from?” Hence, Pearl concluded her view on the usefulness of disability legislation to her as: “I think it is rubbish!”
168 From the above, “it is more than just the impairment” is utilized to convey much of the hurt Pearl experienced in her life because of her impairment, and to reveal the minimal support she had from the context in which she lived. She described the hurts including lack of listeners and feeling lonely in her social network, not being accepted by Taiwanese culture, as well as lack of support from disability legislation. In a word, she argued the pervasive and accumulated hurt she experienced throughout her life as: “my disability is imposed by you [non-disabled people] [Pearl’s emphasis]!”
Needing self-reliance, but becoming more difficult with aging
As a result of being hurt so much because of her impairment, Pearl perceived that people with an impairment like her were disadvantaged in society. Hence, she argued that people with an impairment had to be strong and had to rely on themselves to deal with the difficulties brought about by the impairment. She said: “people with a disability still need to be self-reliant…because disabled people are bullied, if you are not strong, no one can help you!” Therefore, Pearl had no choice but to force herself to work so that she could take care of herself. Pearl described how people saw her going to work as an amazing thing for a person with a serious impairment such as her. She explained that having a job was necessary for her to live her life with the impairment because disability legislation could not provide any support to her. She said:
The Protection Act cannot help us! ... People say: you go to work with an electric wheelchair, how come? Don’t people with an electric wheelchair stay at home? You go out with it, isn’t it very dangerous? They think I am very brave, but I have no choice! If I don’t work today, who will take care of me? That’s the point [Pearl’s emphasis]!
However, Pearl was anxious about the influence of her aging that would make her body weaker so that she would not be able to maintain her self-reliance. She found after living with her impairment for two decades, she started to have post-polio syndrome, which made her body become weaker. She described the effects of the post-polio syndrome on her body:
The post-polio syndrome gradually makes the body painful, like me having inexplicable pain now. Sometimes my breathing and heart are uncomfortable. People in our age having twenty or more years of polio have already gradually been getting these symptoms, including me.
169 With the irreversibly decreasing strength accompanying her aging, Pearl feared the day would come when she would not be able to take care of herself. She stated her panic as: “I can press the keyboard now, but gradually I might not be able to press it and I will not be able to do anything!”
Summary
Using “it is more than just the impairment” to depict Pearl’s life in Taiwan (see Figure 6.1.1) shows that her impairment caused her to live with pain, and brought significant mobility difficulties. These disadvantageous situations could not be reversed because the impairment was incurable. In addition, because of her impairment, she had a fragile mind because she experienced pervasive hurt from the context in which she lived, such as having no friends, offensive cultural attitudes towards her impairment, and the uselessness of disability legislation for supporting her life with polio. Pearl felt she received little support from the context in which she lived; hence, she had to rely on herself to have ongoing support to live her life with the impairment. However, with her aging, she was worried that she would be unable to support herself in the future. In the following section, “it is more than just the impairment” will be used to illustrate how Pearl managed her life in Taiwan.
170
Perceptions of the context in which Pearl was living her life
Social network Perceptions on living a life with a physical - Hurtful relationships: such as discrimination everywhere, impairment professional dominance, loneliness Living with an impaired body Cultural attitudes towards her impairment - Living with pain - Rejection: such as feeling blamed - Incurable impairment Disability legislation - Mobility difficulties - Useless: such as limited support, Dealing with the mind employment rights not guaranteed - Fragile mind: feeling uncomfortable with having a
physical impairment, having hurtful experiences
Dealing with the need for support
- Recognizing needed support: self-reliance
- Fear of unavailability of support in her life: aging
Figure 6.1.1 Pearl’s life in Taiwan: “I have lived in tears all my life!”
171 6.1.2 Pearl’s management of her life in Taiwan: building an orphan fortress
Pearl adopted the strategy of building the fortress much of the time in living her life with a physical impairment. She used the constructed fortress to protect the fragility of her body and mind. For example, because of her fragile mind, Pearl was not confident of getting others’ assistance and she was wary of inaccessibility when she went outside. Hence, she built the fortress to isolate herself. Therefore, she seldom went outside so as to protect her impaired body from hurt. She said:
I don’t have places to go…People like me, if we want to go outside with our wheelchairs, we worry about many problems we might face. For example, if our electric wheelchairs broke down on the street, who would help us? If we wanted to go to the sidewalk, people block the way so that we cannot get there.
Being alone in the orphan fortress
Pearl described herself as an orphan because of lacking family support in her life; she said: “I was like an orphan, and I couldn’t go home!” Hence, the fortress she built was named “an orphan fortress”. She lived alone there.
Because of the abuse from her mother and the institution in which she had lived during her childhood, Pearl had constructed the orphan fortress to avoid thinking of the hurt she had suffered from. She said: “I am the type of person that no matter what happened, after leaving a place I will never go back again! Because that was all miserable memories!” As a result, she did not have contact with her mother and the staff in the institution. Pearl described her experience of attempting to keep in touch with her mother as a disaster. She said: “I have ignored her since my childhood, even more so now! I have been running away from a disaster, and have avoided seeing her”. Pearl preferred to isolate herself than to have contact with people. She said: “I can’t face crowds, and I like to be alone”. Pearl would like to stay in her fortress where she created her own world as she wanted it. She described what she did in her fortress as:
Decorate my place with flowers or something. Although I can’t decorate it as beautifully as others, in my thoughts at least I can have the world I want because in my heart I hope to have a place full of flowers.
In a word, the orphan fortress she built secluded her from the world.
172 Unwillingness to leave the orphan fortress
Because of the influence of constant hurtful experiences in her life, Pearl did not want to leave the orphan fortress because she was wary of getting hurt. For example, Pearl did not see how disability legislation could improve her life with the impairment. Take changing cultural attitudes towards people with an impairment as an example, Pearl perceived the legislation as being useless. She explained:
the government promotes disability….like the public TV channel, it has advertised that people should give individuals with a disability some opportunities and care, and accept them, and see them like ordinary people. Talk about the positive aspect and hope people can change their views on us. However, advertising is only advertising, and propaganda is only propaganda. Are there any people to do it? Impossible, it’s impossible!
As for social protests held by people with an impairment themselves to fight for their rights, Pearl also saw this as being fruitless. She concluded: “it’s a joke! In Taiwan, it’s no use!”
Thus, because Pearl did not believe the context in which she lived could provide much support for her, she preferred to stay in the orphan fortress. It was safe.
Having no choice but to let down the drawbridge to the orphan fortress
Because having a job was important for Pearl to live her life with a physical impairment, she could not avoid working relationships. She said: “If I don’t work today, who will take care of me [Pearl’s emphasis]?” Hence, Pearl needed to let down the drawbridge to find a job. She recalled how she covered up her fear of looking for a job on her own: “I braced myself to look for a job alone, and no one came with me, no one!”
When she had a job, she tended to erect the orphan fortress in the workplace. For example, she was used to suppressing her feelings and not telling her colleagues how she felt and what she cared about. She said: “If I have any problem, you have never heard me call you and tell you what happened to me because I have learned to keep things to myself, to keep to myself and not to talk about it”. Also, when she got hurt from work, she depended on her own comfort. She said: “I tell myself all the time: because you are not me….I am the person experiencing it, and no one
173 can live the same life as me. This is my experience of life, and gradually I can comfort myself naturally”. Then, Pearl used the orphan fortress outwardly against her colleagues, such as hiding her real self in front of them. She stated:
I prefer to go to work just as an ordinary thing, and I don’t want to show my weakness. For example, if I want to cry today, I won’t cry in front of you. I will go outside and have a ride. After crying, I would come in again.
“It is more than just the impairment” shows that Pearl managed her life in Taiwan by constructing an orphan fortress in the context in which she lived. She used it against people around her. Also, because of the influence of her fragile mind, she did not see any hope of having support from the context in which she lived, and thus stayed in the orphan fortress.
See Figure 6.1.2 for using “it is more than just the impairment” to depict Pearl’s life in Taiwan and her management of it.
174 Perceptions of the context in which Pearl was living her life
Social network Perceptions on living a life with a physical impairment - Hurtful relationships: such as discrimination everywhere, Living with an impaired body professional dominance, loneliness - Living with pain Cultural attitudes towards her impairment - Incurable impairment - Rejection: such as feeling blamed - Mobility difficulties Disability legislation Dealing with the mind - Useless: such as limited support, - Fragile mind: feeling uncomfortable with having a physical employment rights not guaranteed impairment, having hurtful experiences
Dealing with the need for support
- Recognizing needed support: self-reliance
- Fear of unavailability of support in her life: aging
Figure 6.1.2: Pearl’s life in Taiwan and her management of it Pearl’s management of her life in Taiwan
Building the orphan fortress
- Protecting the impaired body
- Protecting the fragile mind: such as avoiding thinking of the hurt,
isolating herself, comforting herself, suppressing her feelings
- Letting down the drawbridge to the fortress: such as covering up fear 175 6.1.3 Outcome of Pearl’s management of her life in Taiwan: continuing to build the orphan fortress
Because of the pervasive hurt in living her life with a physical impairment, Pearl had developed a fragile mind. Hence, she continued using the strategy of building the orphan fortress in her life. She became a fortress lady because of her tendency to use this strategy much of the time. Continuously constructing the orphan fortress against the context in which she lived, she brought a negative attitude to how to live the remainder of her life. She thought she did not need people’s company but lived in the orphan fortress alone. She said: “my experience of life is whether having people to be with you is the same, people come to the world with nothing and they leave with nothing”. In addition, the effect of continuing to construct the orphan fortress against people around her, Pearl had great difficulties in her social relationships. She told of her colleagues’ impression of her as: “they think I am a recluse and don’t like to be with people”.
Self-imposed social isolation
The outcome of continuing to build the orphan fortress made Pearl live a self-imposed isolated social life as she said: “Actually I have a thought: I don’t need friends!” She was the only person who lived in the orphan fortress because she said: “since I moved in, I have refused to have any visitors!” The cost of continuous construction of the orphan fortress resulted in having isolated social relationships in the context in which she lived and enforcing her perceptions of having a fragile mind. Hence, Pearl would keep constructing the orphan fortress in order to protect herself from hurt and the fortress became so solid that other people were not easily let in. She said: “Someone told me if people want to gain my trust, it can’t be achieved in one or two years!” Thus, Pearl was described as a fortress lady because of the iterative process of building the orphan fortress in living her life with an impairment.
Hurt resulting from letting down the drawbridge to the fortress
Being a person with a physical impairment, Pearl built the orphan fortress against the context in which she lived, and she stayed in the orphan fortress she had built much of the time. In a few circumstances, she had to let down the drawbridge to the fortress in order to get the support she needed, such as having a job. Her working experiences were not happy and she felt hurt because she experienced great difficulties in finding a job and dealing with her working relationships. For example, in her experiences of looking for a job, she found most of the workplaces had the
176 serious problem of layers of inaccessibility for her to be able to work there. She told of these experiences angrily:
Some people [with an impairment, including her] can’t even get to the sidewalk so how can they get in the front door? Right, if they get in the front door, how do they access their computers?…If they can have access to a desk, won’t they need to consider whether they can go to the toilet? So after going through layers of stuff, how do they feel?
In her job, Pearl had tried to get along with her colleagues. However, their attitudes towards her annoyed her. Pearl described one of the situations which hurt her: “when I was talking, they kept walking and walking, and I couldn’t keep up with them [Pearl sitting in the electric wheelchair]. Could they sit down to give me a few seconds to listen to what I wanted to say?”
Letting down the drawbridge to the fortress resulted in hurt, which led Pearl to perceive that her mind was becoming more fragile again. Thus, it became an iterative process for Pearl to continue building the orphan fortress against the context in which she lived.
See Figure 6.1.3 for the theoretical depiction of the iterative process of how Pearl lived a fortress lady’s life in Taiwan.
177 Perceptions of the context in which Pearl was living her life
Social network
- Hurtful relationships: such as discrimination everywhere, Perceptions on living a life with a physical impairment
professional dominance, loneliness Living with an impaired body
Cultural attitudes towards her impairment - Living with pain
- Rejection: such as feeling blamed - Incurable impairment
Disability legislation - Mobility difficulties
- Useless: such as limited support, Dealing with the mind
employment rights not guaranteed - Fragile mind: feeling uncomfortable with having a physical
impairment, having hurtful experiences
Dealing with the need for support
- Recognizing needed support: self-reliance
- Fear of unavailability of support in her life: aging
Outcome of Pearl’s management of her life in Pearl’s management of her life in Taiwan Taiwan Building the orphan fortress Continuing to build the orphan fortress - Protecting the impaired body - Self-imposed social isolation: alone in the fortress - Protecting the fragile mind: such as avoiding thinking of the hurt, - Hurt resulting from letting down the drawbridge to isolating herself, comforting herself, suppressing her feelings the fortress - Letting down the drawbridge to the fortress: such as covering up fear
178
Figure 6.1.3: Theoretical depiction of the iterative process for Pearl to live her life with a physical impairment in Taiwan 6.2 Joyce in a peach fortress: “someone said I was a peach”
6.2.1. Joyce’s life in Taiwan: “I would draw a boundary, not allowing other people to get too close because I am afraid of getting hurt”
Living with an impaired body
Joyce lives with an incurable impairment. She had lost the sensation in her foot and had experienced mobility difficulties during her life. She told of the significant influence of the sensation loss in her foot as she might not be aware of withdrawing it before it touched something dangerous. She said: “The sole of my foot gets hurt easily …because my foot has no sensation”. Also, because of the impairment, she had difficulties in moving around and exercising. She explained: “I can’t do exercise like playing baseball, soccer or running. If I want to become slim through exercise, I can’t exercise and I can’t run”. Hence, the loss of sensation in her foot and mobility difficulties made Joyce unable to do things she liked and that non-disabled people took for granted. She said: “I can’t go outside to have fun, … I can’t do things when I want to as much…and there are so many things I can’t do!” She felt regretful about this. Recalling her school life, she was lonely because she could not have fun like her peers, but just stayed at home to watch TV to compensate for the inconvenience and mobility difficulties brought about by the impairment in her life. She elaborated:
I regularly went to school and then went home. That’s why I love to watch TV so much! Because I didn’t have any place to go, I could watch TV to see many incredible things! Because I couldn’t experience them by myself, I just watched TV!
In addition to the above difficulties Joyce had faced, she also predicted the impairment would make her body deteriorate sooner in the future. She believed her physical situation would become terrible with her aging as: “For my body, I realize that maybe after several years, my situation will become worse and worse, perhaps the supporting force of my knee will become weaker and weaker, maybe its condition will be very bad”.
Living with a fragile mind
Because of the impairment, Joyce had a fragile mind. She described how she was hurt easily when people mentioned something related to her impairment in
179 their conversation. She said: “When people don’t talk about me, I can treat it very calmly. But if it were about me, only a little, I feel terribly hurt… [her face looked sad]”
- Feeling uncomfortable with having a physical impairment
Her mind became so vulnerable because she felt very uncomfortable with the identity of being a person with a physical impairment. Joyce said: “It is very difficult for me [to admit I am a disabled person] because I was not born like this”. She had experienced struggling with such self-identity since she had lived with the impairment. She said she often wondered why she got the impairment. She said sadly:
I have wondered very often why this happened to me. But I think [looks depressed] I can’t figure out. Is that because I eat too much chicken? Or too much pork and beef? But the doctors don’t know the reason, either. The chance is one in thousands or in a thousand. Anyway the probability is very low. Unexpectedly, I was afflicted by it … and couldn’t do anything about it!
Joyce talked about the process of her struggle being a person with a physical impairment throughout her school life. She recalled how she accepted the fact of being an impaired person when she was a primary school student. She believed she accepted it because she was young, she did not understand its impacts on her life and she was not bothered by it. She recounted: “Because I was young, I accepted it easily … I think it was because I didn’t understand I accepted it. Therefore, I wasn’t disturbed by it”. When she was a high school student, she started avoiding the identity of being a person with a physical impairment, and tried to make herself look like a non-impaired person. She said: “I avoided myself a lot at the time in my high school. I had tried to do my best to make myself look like a normal person…let other people feel… I was the same as them”. When Joyce was an undergraduate, she began to join the activities designed for people with an impairment. Then, she started to feel more relieved because she found there were many people like her with an impairment around. She described: “I started to take part in some activities related to disabled people, and then I realized I was not the only one …strange…different. I started to accept myself more”.
- Having hurtful experiences
180 In addition to Joyce’s unwillingness to be a person with a physical impairment, the hurtful experiences she received from the context in which she lived also made her mind fragile. For example, the stigmatizing experiences made her feel hurt. She related this to one of her experiences that children looked at her impaired foot directly when they saw her. She explained:
I am looked at often, but they look at my foot not my face. If they looked at my face, I could stand it. But I know I am not a beautiful girl, so it is not because of that. They usually look at my foot first and then my face.
Joyce depicted how living with the impairment gradually undermined her thoughts and feelings because of the hurt it brought, such as mobility difficulties and stigmatization in social settings. She looked depressed when she spoke of it:
When I was young, I didn’t understand the difficulties it would bring to me in the future and what I would encounter. Because I didn’t understand, I accepted the way that I was. But since I have grown up, I have been affected by it and I have understood my mobility difficulties, this identity, the inconvenience it has brought to me, and I have had to put up with how other people have looked at me for a long time.
Ongoing strong support from family
Living with a physical impairment, Joyce perceived she got little support from the context in which she lived, except from her family. Her family’s love and care for her was the most important support to her life. She illustrated how she was protected well like a delicate peach by her family. She said: “I would be protected very well by my family because someone said I was a peach before…A peach cannot take pressure! A peach is very soft, cannot be touched, and is protected very well”. Joyce thought she was fortunate to have such a strong family’s support in her life. She said: “I really feel I am very very lucky!” Compared with other people with an impairment, Joyce found she experienced less hurt than they did because her family provided solid protection to prevent her from being hurt. For example, her family filtered through appropriate job interviews for her in advance. She described this support:
because my family protects me very well after all, I don’t have any experience of running up against a wall. Usually before running against
181 a wall, my family would tell me not to go so I don’t experience being refused.
Having little support from the context in which she lived
Turning to Joyce’s perspective of the context in which she lived, she felt hurt because of difficulties she particularly experienced in having an intimate relationship, encountering discriminatory cultural attitudes towards her impairment as well as unsupported disability legislation.
- A thorny path for having an intimate relationship
Joyce wanted to have an intimate relationship very much. However, she found being an impaired woman it was difficult to have such a relationship. She disclosed: “I would like to have an intimate relationship but it was not ok. So, I think it is a thorny path!” She found people with an impairment like her might be a burden to a non-disabled couple because taking care of them might cost a great deal in medical treatment. She said: “Who will want to be with someone spending more than they earn?” Thus, Joyce felt hurt that her impairment impeded her developing an intimate relationship she wanted so much. She recounted:
My mum said if my foot were not like this, I might fall in love very easily. Because I have heard it for a long time, if my foot were not like this today … perhaps I would have a boyfriend waiting for me already. Perhaps I would have already walked in to the church to get married.
In addition to that, Joyce was wary of getting hurt in having an intimate relationship because she wondered about the motive for a non-disabled man to be with an impaired woman such as her. Joyce talked about her experience of watching a documentary film about being in love with women with an impairment. She was stunned because the true stories not only told her the difficulties of having an intimate relationship with non-disabled people but also the potential dangers in having such a relationship. She recalled:
I was very impressed by the movie I watched last time...it was a shock to me, I can’t let go of the scene. A boy was interviewed and asked: would you like to have a relationship with a disabled person? He said No! And he said … [pause] as for being in love, it could be possible, but impossible to marry. Anyway, I felt very bad. Because it was a true-story film and the girls in the film loved very deeply and faced very
182 big difficulties, especially when the one you loved didn’t stand by you. And some people were swindled out of their money and feelings. Then I felt very……[pause] it was like a bomb blast!
- Offensive cultural attitudes towards her impairment
Turning to support from Taiwanese culture, Joyce perceived that there was very little. It was because she felt its attitudes towards people who had an impairment were offensive to her. Joyce found people tended to blame those who had an impairment as reincarnation and karma. Hence, people saw individuals with an impairment as being punished. She felt such an explanation lacked scientific evidence, and she did not agree with this view at all. She said: “I don’t think I have a disability because of my wrongdoing in a previous life!” In addition, people with an impairment were stigmatized because non-disabled people tended to use offensive words for them. Joyce felt uncomfortable about this. She said: “a cripple, a lunatic [Taiwanese], which is offensive language. They are often used to describe people with a disability”. Furthermore, the social values towards people with an impairment are that they are inferior to others; Joyce perceived that people saw having a family member with an impairment as a shameful thing. However, Joyce did not agree with such a cultural attitude towards people with an impairment at all. She said: “I think it is neither embarrassing nor about losing face!”
In a word, Joyce felt people with an impairment were likely to be rejected in Taiwanese culture. She argued that to educate children with positive views on and appropriate attitudes towards people with an impairment could be helpful to eliminate discrimination and prejudice against them and then to gain more acceptance of them. She explained:
If you teach children,…let them know people with a disability are not horrible, and they just have difference and difficulties, to be more thoughtful of them and kind to them. When the kids grow up, they wouldn’t be prejudiced or discriminate against people with a disability or any other unpleasant contact with them…so education is very important!
- Bureaucratic disability legislation
In addition to the unsupportive culture Joyce perceived, she also saw disability legislation as being less useful for her to live her life with the impairment. She said:
183 “I don’t have any strong feelings about whether the Act can be helpful for us”. After Joyce got her first job working in an organization for people with an impairment, she started to be aware that there were resources for people with an impairment. However, she found most of the time she could not access the resources provided under the legislation. Hence, she was unhappy about it. She said:
At first I didn’t know what kinds of benefits I was entitled to, so I didn’t know I could use them. But when I found out those benefits and the many reasons I couldn’t use them, I felt dissatisfied!
Joyce believed disability legislation was manipulated by senior government workers but did not really achieve things for people with an impairment, so she could not get the support she wanted. She contended: “I always think the Act is …manipulated by the upper level administrators…”
Joyce gave the following example of how in her view the legislation was manipulated by bureaucrats. When she was an undergraduate, she was suspicious of the slow progress of modifying a classroom for setting up the resource room in her university. By comparison, another larger construction near her home was finished in just one year. She posed her question about the slow progress and asked the school staff, but she got an unclear answer. She recalled: “I didn’t know why it took two years to build the resource room,…Because I kept asking them when it would be done,…they said the administrative procedures were not done yet”. In addition, according to disability legislation, if the employers did not follow the regulations to hire a quota of people with an impairment, they would be fined; these penalties became the employment fund for people with an impairment. However, Joyce questioned the usage of the employment fund for people with an impairment. She doubted it was spent on this group of people. She said: “You don’t know how the penalties are used. Because we are not the upper level administrators, we don’t know what the penalty funds were spent on!”
In effect, Joyce found the unreasonable things she experienced and perceived above were because the bureaucrats did not do things for people with an impairment but used the legislation as an excuse to protect themselves, people with an impairment received limited support. She concluded: “in my opinion, it is just for government officials to say that they have a law to protect themselves when they are people who understand the laws”.
184 In addition to her discontent with the current legislation providing little support to people with an impairment, Joyce also saw no prospect of further improvement in the legislation because she thought the bureaucrats made slow progress in making amendments. She told of her anger stopping her reading the copy of the amendment. She said: “when I read it, I become angry! I don’t want to read it!”
To conclude Joyce’s experiences of and perspectives on disability legislation, she thought it was not supportive to her to live her life with the impairment. She said: “I think that having the Act doesn’t make any difference to me”. Hence, Joyce had no expectation of getting support from the legislation. She said: “I feel no matter how well I know disability legislation, it is no use. I won’t use it in this small place. I can’t get what I want!”
Unavailability of family’s support in the future so having to be self-reliant
From the above, to live a life with a physical impairment, it could be seen that Joyce mainly had her family’s support and got little support from the other sources, such as Taiwanese culture and disability legislation. Although her family provided solid and ongoing support to her, she perceived it would be impossible to have that in the future. When her parents died, the family support would be gone. Hence, Joyce came to understand there were things she needed to face on her own and could not rely on her parents for her whole life. She said: “they do protect me very well. But I still have things that I need to face…it is impossible to depend on them for my whole life”.
As a result of her perception of the impossibility of having her family’s and other people’s support from the context in which she lived in the future, Joyce was aware she had to learn to be self-reliant to live her life with the impairment. She told of her realization of this: “human beings still have to live in the world independently. I [hope I] can live without depending on anyone gradually, and hope I can do it gradually”. Indeed, her parents expected her to be able to take care of herself independently because of their concern about her future. Joyce recounted her parents’ words as: “They told me I just need to think how I can feed myself in the future. They told me not to think too much and asked me to take care of myself first”. Joyce agreed with their idea. Hence, she thought it was imperative to have a job so that she was capable of being self-reliant to live her life with a physical impairment. She said: “to have a job and I am able to feed myself”.
185 Summary
Using “it is more than just the impairment” to depict Joyce’ life in Taiwan, explains how tissue fibroma had a permanent influence on her body as loss of foot sensation, hence, her foot got hurt easily. Additionally, her physical situation would unavoidably deteriorate with her aging. Moreover, the impairment gave her difficulties in moving around in her everyday life and left her feeling lonely because she could not do whatever she wanted.
Furthermore, “it is more than just the impairment” also illustrates that Joyce was reluctant to be a person with an impairment; however, she had no choice about it. Hence, her mind became vulnerable and sensitive to hurt from her social world. Also, except for the support from Joyce’s family, she did not perceive she had much support from the context in which she lived, such as other social relationships, Taiwanese culture, and disability legislation. Thus, her thoughts and feelings were pervasively undermined by the unsupportive context in which she lived. In addition, Joyce perceived her family support could not be sustained in the future because her parents would die someday. Hence, she perceived she had to be self-reliant to live her life with a physical impairment in the future. Her family and she thought the way to settle this problem was to have a job.
Figure 6.2.1 presents Joyce’s life in Taiwan through “it is more than just the impairment”.
186
Perceptions of the context in which Joyce was living her life
Social network Perceptions of herself on living a life with a
- Hurtful relationships such as discrimination everywhere, physical impairment
loneliness Living with an impaired body
- Supportive relationships such as family - Incurable impairment
Cultural attitudes towards her impairment - Mobility difficulties
- Rejection: such as feeling blamed, Dealing with the mind
feeling stigmatized in language, - Fragile mind: feeling uncomfortable with having a feeling inferior to others physical impairment, having hurtful experiences
Disability legislation Dealing with the need for support
- Useless: such as limited support, - Fear of unavailability of support in her life: losing
employment rights not guaranteed current support, being a burden
- Recognizing needed support: self-reliance
Figure 6.2.1 Joyce’s life in Taiwan: “I would draw a boundary, not allowing other people to get too close because I am afraid of getting hurt”
187 6.2.2 Joyce’s management of her life in Taiwan: building a peach fortress
In order to live her life with a physical impairment, Joyce chose to build a fortress to protect her fragile body and mind from hurt. For example, Joyce depicted how the fortress she built stopped her engaging in activities and interacting with other people so as to protect her body and mind from hurt. She looked depressed when she told of this:
it is very inconvenient to go out. I am afraid of walking too slowly so that I encumber others. And if I can’t walk for a longer time, will I encumber others? Would they feel very inconvenienced? I am afraid when going out that people will look at me ….with a strange look?
Unlike Pearl, Joyce was not the only one who lived in the fortress she built. She also included her family in because she was protected well by her family as a delicate peach and she felt comfortable with them in the fortress. Hence, the fortress she constructed was named “peach fortress”. Except for her family, Joyce used the peach fortress to keep her distance from others. She said: “being a disabled person I would keep my distance from other people”. Her fragile mind made her stay in the peach fortress she had constructed to protect herself from anticipated hurt. She described the protection as: “I would have a line… I would draw a boundary, not allowing other people to get too close because I am afraid of getting hurt”.
Building the peach fortress inward
Joyce used several strategies to build the peach fortress within herself to deal with her life. For example, before she started to work, Joyce tended to isolate herself, and not to contact other people. She said: “[having a job is] the first step in making contact with society. Otherwise, in fact from the past to the present, I haven’t had too much contact with people and basically not too much with society, either”. Hence, she lived in a self-imposed isolated life in the peach fortress during her school life. She described it as: “At that time I didn’t have enough courage to have a go at doing other things. So, when I finished class, I just stayed in the classroom and after school, I just went home and didn’t go anywhere”. In her high school life, Joyce chose to study in the same school with her sister because this made her feel comfortable and safe. She recalled: “I felt it made me feel more relaxed if I studied with my sister in the same place”.
188 In addition, because Joyce felt hurt about being a person with a physical impairment, she used the peach fortress to avoid thinking of this hurt. As a result, when she was a freshman, she refused to ride a three-wheeled scooter because it told everybody she was a person with an impairment. She recalled agitatedly:
When I thought about a transportation vehicle, I strongly insisted that I was not going to ride the three-wheeled scooter, right. So I rejected doing that very very much, and I hated it, I felt riding a scooter was very ugly!
Also, she liked to take part in activities for students with an impairment because she could see many people like her, with an impairment, and thus she would not be distressed and feel hurt by the identity of being a person with a physical impairment. She explained: “It seems you have many people of the same kind”.
Furthermore, because Joyce did not have confidence in having a successful intimate relationship, she built the peach fortress to suppress her feelings. She explained: “I think I shouldn’t let myself have too many expectations and hopes, so when I end up with nothing, I won’t feel disappointed and too hurt. Even though he treats me very well, I would say we are just friends”.
Building the peach fortress outward
To manage her life with the impairment, Joyce built the peach fortress against the context in which she lived often. For example, she constructed the peach fortress to hide herself from others. Joyce spoke of how she used her impairment as an excuse to turn down others’ requests. She said: “I often use the excuse of my foot to avoid doing something. People around me would say: ok, that’s fine”. In addition, because of her worry about anticipated hurt, Joyce built the peach fortress to detach herself from people. For example, taking her views on social protests held by people with an impairment themselves as an example, she chose not to do anything about it so that she would not get hurt. She said: “I think they [participating in demonstrations] are very brave people …Honestly speaking, I think I probably won’t do such things... Because …I don’t know whether it would be an unexpected disaster, I would prefer to do nothing!”
Letting down the drawbridge to the fortress
However, Joyce pointed out she could not keep the peach fortress she built closed all the time. In some unavoidable social relationships such as working
189 relationships, she could not help coming down the drawbridge. Because having a job was necessary for her to live her life with the impairment, she had to let down the drawbridge to the peach fortress so as to keep her job. She recounted her mother’s idea of her need to work to describe why she had to let down the drawbridge: “she [Joyce’s mother] thinks because I am a disabled person, I have to be able to feed myself. Otherwise, what should I do in the future?”
Hence, Joyce managed to let down the drawbridge but still kept her peach fortress in place. She described several strategies she used for this in the workplace. For example, she tried to cover up her fear in dealing with work relationships. She said: “I have to learn how to talk with people and how to get along with them…I try very hard to survive in this environment and learn the best way to protect myself”. In addition, Joyce found she had to fit in at work. Thus, she made several changes she did not like before she started work. For example, she was aware of the necessity to be diplomatic. She explained: “People who are not diplomatic enough meet with disaster!” Therefore, she learned to tell a lie in order to adapt herself to the working environment. She concluded: “telling the truth is very difficult to survive”. Also, because of her impairment, Joyce found she needed colleagues’ help more often than others without an impairment. Thus, Joyce could not show her dislike of colleagues because she needed to retain their support. She stated: “I wouldn’t be unpleasant with him….Because I have to have others’ help with some things today, then I can’t do things that are out of the ordinary”. Furthermore, Joyce began to accept riding a three-wheeled scooter which she did not like before. She said: “when I started to go to work….I don’t know…I think…actually I don’t find riding the three-wheeled scooter is…so …unacceptable”.
Fostering self-reliance
The description above shows how Joyce built a peach fortress in order to protect her body or mind from hurt. In some unavoidable circumstances, she had no choice but to let down the drawbridge to the fortress in order to get support.
At the time of interview, Joyce was protected well like a peach by her family. She feared that one day she would no longer receive her family’s support when her parents passed away. Hence, she wanted to learn how to take care of herself independently. She told of her first attempt at independence when she took a train alone. She recalled:
190 I told them [her parents] I wanted to take a train home and they disagreed because they were worried about me taking a train alone. I kept telling them I could do it, I could do it…Because I wanted to prove I could be…independent.
Also, to live her life with a physical impairment, Joyce realized she needed to be able to be self-reliant in the future because her family support would not be sustained forever. Hence, she was careful with money. Because she knew it was difficult for people with an impairment to get a job, she would monitor her money so as not to waste it. Thus, Joyce felt she did not need to buy brands because it was unnecessary for her and also cost too much. She explained:
Even if I wear the Chanel sandals, it does not necessarily look good on my foot…so I would think it is not necessary for me to go after famous brands... The money I save can be used to plan my future!
Summary
In this section, “it is more than just the impairment” has depicted how Joyce managed her life in Taiwan. It shows that she built the peach fortress to protect her impaired body and fragile mind from hurt in the context in which she lived. She only allowed her family to live in the peach fortress with her. In working relationships, she had to let down the drawbridge to the peach fortress. In addition, considering her plans for her future, Joyce also prepared herself to be self-reliant.
Readers can refer to Figure 6.2.2 for the depiction of Joyce’s life in Taiwan and her management of it.
191 Perceptions of the context in which Joyce was living her life
Social network Perceptions of herself on living a life with a physical - Hurtful relationships such as discrimination everywhere, impairment loneliness Living with an impaired body - Supportive relationships such as family - Incurable impairment
Cultural attitudes towards her impairment - Mobility difficulties
- Rejection: such as feeling blamed, Dealing with the mind
feeling stigmatized in language, - Fragile mind: feeling uncomfortable with having a
feeling inferior to others physical impairment, having hurtful experiences
Disability legislation Dealing with the need for support - Useless: such as limited support, - Fear of unavailability of support in her life: losing employment rights not guaranteed current support, being a burden
- Recognizing needed support: self-reliance
Figure 6.2.2 Joyce’s life in Taiwan and
Joyce’s management of her life in Taiwan her management of it
Building the peach fortress
- Protecting the impaired body
- Protecting the fragile mind: such as isolating oneself, avoiding thinking of the hurt, suppressing her feelings,
hiding the real self, not trusting people
- Letting down the drawbridge to the fortress: such as covering up fear, fitting in
Fostering support 192 - Ensuring sustainability of support: such as learning to take care of herself independently, careful with money 6.2.3 Outcome of Joyce’s management of her life in Taiwan: continuing to build the peach fortress
Because Joyce was wary of anticipated hurt through being a person with a physical impairment, she got used to building the peach fortress to live her life with the impairment. She told of her lack of courage to walk out of her peach fortress: “I also need to have the courage and action [talking in small voice]. If not, even people around me have prepared well for me, but I am afraid of taking the step, that is also no use!”
Self-imposed social isolation
The outcome of continuing to build the peach fortress in her life resulted in Joyce feeling lonely. Before having a job, Joyce constructed the peach fortress so she seldom actively contacted other people except for her family. Her social life was just family and study. She described her high school life as: “I felt very stressed and life was very boring. Studying, studying, and studying. Studying, studying, and studying. My three, six years all spent on devoting myself to studying”. After starting to work, Joyce had no choice but let down the drawbridge to her fortress but kept the fortress in place to deal with her working relationships. She used the peach fortress to protect herself as she did not easily trust people. She depicted her concern about interacting with others: “I think people are strange animals and are very fickle. They find it very easy to say one thing in front of you and say another behind your back. They are not easy to cope with!” Hence, Joyce encountered difficulties in getting along with people in her life. She concluded: “Frankly speaking, friendships for me have not been going smoothly!” From ‘it is more than just the impairment’, it can be seen that the outcome of continuing to build the peach fortress was that Joyce led a self-imposed isolated life.
- Family allowed to live in the peach fortress
Because her family provided strong support to her and protected her like a delicate peach, she built a peach fortress where they were allowed to live. Joyce saw her family as an outlet to release her pressure and hurt as being a person with a physical impairment. When she was with them, she could shout about the pain she incurred from outside. She said: “I feel I put up with it hard on the outside, and when I go home, I don’t want to put up with it any more!”
Hence, she acted as a spoilt child. She depicted her attitude and behavior in the peach fortress as: “At home I act like a typical younger child, very wilful, and then
193 speaking unkindly. That means I am unreasonable. Talking to me is no use; I would insist on what I want to do!” Joyce told of one example of how she grabbed the TV remote control from her mother. She said: “I wanted to watch One Piece [a cartoon] but she wanted to watch baseball, I would insist on watching One Piece. When I finished, I would return the TV remote control”.
Hence, acting as a spoilt child in the peach fortress often brought hurt to both parties. Joyce described the situation as: “We hurt one another, saying hurtful things. I would say that you don’t understand me because you are not like me. But for them this is hurtful”.
Hurt resulting from letting down the drawbridge to the fortress
As for the outcome of letting down the drawbridge for her first job, Joyce got hurt because of this. At first, she was excited about having a job, and then became depressed because she encountered difficulties at work. She said: “Because I had never had a job, when I started to work I was very excited…Afterwards I was depressed because many things happened which have conflicted with my ideas and I can’t say anything”. Hence, letting down the drawbridge to the fortress made her feel hurt.
For Joyce, the outcome of continuing to build the peach fortress resulted in having isolated social relationships, and that of letting down the drawbridge to the fortress resulted in hurt again. The pervasiveness of hurt she experienced kept enforcing her perceptions of having a fragile mind. Hence, Joyce would build the peach fortress in order to protect her fragile mind. Thus, it became an iterative process of living her life with an impairment as a fortress lady.
See Figure 6.2.3 for the theoretical depiction of the iterative process of Joyce’s life in Taiwan.
194 Perceptions of the context in which Joyce was living her life Perceptions of herself on living a life with a Social network physical impairment - Hurtful relationships such as discrimination everywhere, Living with an impaired body loneliness - Incurable impairment - Supportive relationships such as family - Mobility difficulties Cultural attitudes towards her impairment Dealing with the mind - Rejection: such as feeling blamed, - Fragile mind: feeling uncomfortable with having a feeling stigmatized in language, physical impairment, having hurtful experiences feeling inferior to others Dealing with the need for support Disability legislation - Fear of unavailability of support in her life: losing - Useless: such as limited support, current support, being a burden employment rights not guaranteed - Recognizing needed support: self-reliance
Joyce’s management of her life in Taiwan
Building the peach fortress Outcome of Joyce’s management of her - Protecting the impaired body life in Taiwan - Protecting the fragile mind: such as isolating oneself, avoiding thinking of the Continuing to build the peach fortress hurt, suppressing her feelings, hiding the real self, not trusting people - Self-imposed social isolation: with - Letting down the drawbridge to the fortress: such as covering up fear, fitting in family in the fortress Fostering support - Hurt resulting from letting down the - Ensuring sustainability of support: such as learning to take care of herself drawbridge to the fortress independently, careful with money
195
Figure 6.2.3 Theoretical depiction of the iterative process for Joyce to live her life with a physical impairment in Taiwan 6.3 Discussion of fortress ladies
“It is more than just the impairment” depicts fortress ladies’ lives in Taiwan. It demonstrates they perceived more hurt than support in the context in which they lived. Hence, both fortress ladies believed they needed to be self-reliant and had a fragile mind. Therefore, “it is more than just the impairment” explains why these two participants tended to build a fortress for living their lives with the impairment.
In particular, it showed Pearl built a stronger fortress against people than Joyce. There were three examples to illustrate this. First, Joyce allowed her family to live in her fortress but Pearl did not; second, Pearl used a stronger tone of voice than Joyce to describe her defense against people; third, Joyce prepared herself to foster support in order to plan her future, but Pearl did not intend to do so. The intervening factor for the difference of the strength of the fortress they constructed might be that Pearl experienced more hurt than Joyce in living their lives with a physical impairment.
The similarities and differences between two fortress ladies are discussed below now.
1) Similarities with each other
a) Fragile mind
In addition to the commonality of living with an impaired body for all participants, the fortress ladies demonstrated another important characteristic: having a fragile mind, which meant their psycho-emotional well-being was undermined by living their lives with a physical impairment. Pearl and Joyce pointed out the formulation of their fragile mind resulted both from feeling uncomfortable with having a physical impairment and from having hurtful experiences. For example, Joyce admitted she was quite uncomfortable with the identity of being a person with a physical impairment which had bothered her for a long time. This identity created her fragile mind. Pearl told of how pervasively hurtful experiences from the context in which she lived made her feel hurt. She said:
What human beings remember deepest is hurt [Pearl’s emphasis]! ... Who has ever treated you badly, who doesn’t value you or who doesn’t care about you, when you are old, you will remember whoever treated
196 you badly! Although you forget their name and face, you remember I was hurt because of this!
These two factors had reciprocal effects on each other. Feeling uncomfortable with having a physical impairment made the mind fragile which led the fortress ladies easily feeling hurt in their social world. Following the hurtful experiences, the fortress ladies perceived even more uncomfortable feelings as a result of their impairment. Thus, the iterative process between feeling uncomfortable with being an impaired person, having a fragile mind and having hurtful experiences would make the fortress ladies’ feelings and thoughts render them more and more vulnerable.
b) Self-reliance
“It is more than just the impairment” suggests that the fortress ladies had another similarity: they perceived they needed to be self-reliant. Because the fortress ladies perceived they could not get ongoing or sustainable support from the context in which they lived, they needed to rely on themselves to live their lives with a physical impairment. For Joyce, she had strong ongoing support from her family, but this would not be sustained in the future. Thus, she perceived she needed to learn how to be self-reliant in order to plan her future. She said: “they do protect me very well. But I still have things that I need to face…it is impossible to depend on them for my whole life”. For Pearl, she did not perceive any strong ongoing and sustainable support from the context in which she lived. Thus, she perceived the necessity to be self-reliant to live her life with a physical impairment. She concluded: “Today, I need to live by myself”.
2) Distinguishing characteristic: Pearl’s fortress stronger than Joyce’s
In addition to the similarities between the two fortress ladies described above, “it is more than just the impairment” also shows they had a distinguishing characteristic. That is, Pearl built a stronger fortress than Joyce. Three things illustrate this difference: first, Pearl lived alone in the orphan fortress, but Joyce lived with her family in the peach fortress. Second, Pearl spoke out about keeping her distance from people as a wall which implied a stronger self-defense than Joyce’s description of a line. Finally, Pearl did not intend to plan her future, but Joyce did. These are discussed in detail below.
a) Different number of people in a fortress
197 “It is more than just the impairment” shows how the fortress ladies tended to build a fortress to protect their impaired body and fragile mind. However, they built different kinds of fortresses. Pearl built an orphan fortress, which allowed no one in. She explained: “since I moved in, I have refused to have any visitors!” Compared with Pearl’s fortress, Joyce built a peach fortress in which her family lived together with her. She said: “I would not be that detached from blood relatives”. Because Joyce received strong family support, she felt safe and comfortable with them. She depicted her family’s protective attitude towards her as protecting a delicate, precious peach. Hence, she allowed them to stay in her fortress. On the contrary, Pearl did not perceive support but rather hurt from her mother. She described meeting up with her mother as a disaster. Thus, Pearl depicted herself as an orphan who could not get warmth from her family. She said: “I was like an orphan, and I couldn’t go home!” Therefore, Pearl built an orphan fortress to live in, where her mother or anyone else was not welcome.
b) Wall vs. line
Second, when the two participants described their defense against people, Pearl used the word ‘wall’ directly to explain it. She said: “Because we both have walls when I need to say something, I have to be careful and wary of the possibility that people might hurt me”. Compared with the strong expression of Pearl’s wall, Joyce used the term ‘line’ as her boundary between herself and other people. She said:
Being a disabled person I would keep my distance from other people … That is I would have a line… I would draw a boundary, not allowing other people to get too close because I am afraid of getting hurt.
Thus, their talk implies that Pearl had a stronger self-defense against people than Joyce.
c) Planning the future
The final aspect to illustrate the different strengths of the fortresses the two participants built is that they held different views on their future. Joyce planned her future, because she knew that when her parents died, the most important support she had from her social network would be gone. Hence, she started to learn to be self-reliant, such as how to take care of herself independently, and being careful with her money for the future.
198 Compared with Joyce, because Pearl perceived she had gone through so many difficulties in living her life with a physical impairment and she found she gradually became less self-reliant as she started to age, she seemed not to think about planning her future, but wanted to live in the present. Thus, she did not want to have further health examinations to understand her condition because she thought it could not remove any difficulties in her life. She explained:
For me, I understand my physical situation. If more suspicious results are found, it can’t change my life [with pain, trials and hardships]! So I would tell myself for better or for worse I will live my life for the moment.
The above discussion demonstrates the differences between the fortresses Pearl and Joyce built respectively. To summarize, Pearl built a stronger fortress than Joyce; namely she had a stronger self-defense against people. The inferred reason for this is that Pearl identified only hurts in her social world without mentioning any support from others and Joyce received strong family support. Hence, this could explain why Pearl built a stronger fortress than Joyce to protect herself.
To conclude, “it is more than just the impairment” depicts the similarities between the fortress ladies as having a fragile mind and the need to be self-reliant. Also, it explains the different strengths of the fortresses they built. Thus, the theory has revealed the complexity of lives that the fortress ladies lived.
199 CHAPTER 7 SOCIAL NETWORKERS
Participants Judy 11 , Yugo, Mary and Hilda are grouped together as ‘social networkers’. These stories are depicted by “it is more than just the impairment”. Following that, the similarities and differences among the four participants are discussed.
11 Judy is the only participant who was involved in only one interview. She agreed to participate in the study so her story is illustrated by the developed theory. Hence, her story is not as detailed as those of the other participants.
200 7.1 Judy as a contented social networker: “I feel very contented!”
7.1.1 Judy’s life in Taiwan: “I suppose that I get along with people ok!”
Living with an impaired body and a non-fragile mind
Judy had polio as a child which has left her with incurably impaired feet. She said: “I have been unable to stand since I was a baby”. Having an impairment did not upset her because she accepted that she had to live with it. She said: “I got used to it [her impairment] when I was young!” Also, because of significant supportive experiences in her childhood, her thoughts and feelings were not disturbed by the impairment. For example, she was the only child with an impairment in her family, therefore, her ten siblings, and her parents gave her better care and love than other family members. She described: “in my childhood, I was the one who got best and most! It meant that more than ten people in my big family loved me dearly!” Furthermore, Judy found her experience of living in an institution for children with an impairment had a long-term positive effect on her social relationships. She found this experience helped her not to have difficulties in getting along with people. She recalled:
I found out that there’s no difference between me and normal people after I stepped into society, also getting along well, I found that environment in childhood was very important! It gave you a life with a group and a normal educational environment. I found it [the environment] very important!
Needing others’ support and being content with the support she received
Because of Judy’s impairment, she had difficulties in moving around. Hence, she often needed others’ assistance in her life. Therefore, when her children were young, her mother-in-law took care of her first two boys for some years. She recalled: “at that time my mother-in-law took care of my two boys almost until they went to kindergarten”. Her husband also provided physical support in dealing with the caring difficulties she had, such as bathing the babies. She explained: “when my elder daughter was born,…when her father was off duty, he would bathe her”. Moreover, when her boys were getting older, they could do a lot of chores for Judy. She said: “There were many things at home they could help me with. They helped me mopping, sweeping, hanging up and bringing laundry in!”
201 In addition to receiving considerable support from her family, Judy expressed her gratitude for having the financial support from disability legislation for helping her to raise her five children. She said: “We had more children so the pressure of life was heavier!... The social welfare was good! It helped a lot of families with people with a disability!”
Judy had made many non-disabled friends and felt they treated her well. She found they would consider the accessibility of the environment for her when they invited her to go out. Judy said: “They [non-disabled friends] know you have difficulties!...if we were planning to go somewhere, they would think about whether there are steps, and would it be ok for me?” Also, they would provide appropriate physical assistance for her, such as helping her to get on the scooter when she prepared to go home. Judy talked about this happily. She said: “When we are leaving, firstly they [non-handicapped people] would park our scooters well, …after we go up and leave, they leave. I feel very warm!”
Judy was satisfied with her life at the time of interview. She felt she was at middle age, her children all grown up and she had some good friends. Hence, she found things were not so difficult for her. She said: “I think living like this is very good! I feel very contented!”
Cultural attitudes towards her impairment
Turning to cultural attitudes towards her impairment, Judy was not happy about being called ‘a person with a disability’. This was because the word ‘disability’ means people who have both physical and mental illness in Mandarin. She knew she just had impaired feet, so wondered why she needed to be called a person with a disability. She told of her unhappiness about this at the beginning of the interview:
I don’t like that term [disability] [sounding unhappy]!…My body and mind are healthy except for the feet [sounding unhappy]!... The categories of handicaps are becoming more and more!…That means that people with many problems in psychological or mental aspects are named as people with a disability…Therefore, disability is used to include all of them.
Although Judy was not happy with the word ‘disability’ being applied to her by non-disabled people, she was pleased to find that with higher educational standards, children nowadays treated people like her with an impairment more politely. For example, children might ask why she looked different from others, but would not
202 just laugh at her directly. She said: “They would ask you: why do you walk on crutches? Why are your feet thinner than others’? Children in the early time did not ask”.
Summary
“It is more than just the impairment” shows that Judy often needed people’s physical assistance because of her impairment, and she received considerable support from the context in which she lived, such as her family, and friends, as well as the disability legislation. Having an impairment did not make her mind become fragile because she felt comfortable with it and had not had seriously hurtful experiences in her life. She was contented with her life. Figure 7.1.1 depicts Judy’s life in Taiwan.
203
Perceptions of the context in which Judy was living her live
Social network
- Supportive relationships such as family, friends Perceptions of herself on living a life with a physical
Cultural attitudes towards her impairment impairment - Rejection: feeling stigmatized in language Living with an impaired body - Growing acceptance: higher education standards - Incurable impairment of non-disabled people - Mobility difficulties Disability legislation Dealing with the mind - Better support: subsidies - Non-fragile mind: accepting living with a physical
impairment, not having hurtful experiences
Dealing with the need for support
- Recognizing needed support: such as physical support, financial support
Figure 7.1.1 Judy’s life in Taiwan: “I suppose that I get along with people ok!”
204 7.1.2 Judy’s management of her life in Taiwan: fostering support
Judy talked about how she fostered support in her social network to assist with her impairment. The strategies she used include seeking out support, maintaining harmony in her social network and ensuring sustainability of support. These are detailed below.
Seeking out support
Because of her impairment, Judy needed others’ physical assistance to help her with her difficulties in moving around. Thus, she sought out support. For example, being a mother with a physical impairment, she asked for her eldest son’s assistance in doing chores or helping her take care of his younger sisters. She recalled the days when her children were all young, and she asked her boy to assist her with bathing one of her girls. She remembered: “I would say: come to help wash her [the elder daughter]! And put the bath towel on the lid of the toilet…when I had finished bathing, I wrapped her and then asked my eldest son to carry her to the bed”. In some situations, when she could not get others’ support in time, she would try to overcome the difficulties by herself. She described this as doing things her own way. For example, she thought about how to take the dirty bowls to the sink by herself without others’ help. She said: “I put the bowls on this chair and then pushed it out. After I had washed them, I pushed the chair in. It was so convenient. And I had my own way!”
Maintaining harmony in her social network
In Judy’s experiences of interacting with people, when she was with non-disabled people, because of her impairment, she would plan her activities in advance or with more thought so as to keep pace with them. Then, people would not need to wait for her too long or to provide physical assistance to her so often. Hence, they would not feel inconvenienced going along with her. She explained: “if I am with non-disabled people, I have to consider…how I interact with others, and then what action I will take! I have to do it in advance or with more consideration”.
Ensuring sustainability of support
Judy was used to investing in profitable relationships to ensure sustainable support. From her experiences of making friends, she found it was easier to make friends with non-disabled people rather than people with an impairment. She reasoned: “sometimes I feel it’s harder for the handicapped to get along with the
205 handicapped!... Instead, I think I will get along better with other people!” Thus, she chose to invest in friendships with non-disabled people to receive more support. She said: “the handicapped do not necessarily want to make friends with the handicapped. To make friends with a non-disabled person is very nice, and has lots of convenience!” Furthermore, Judy married a non-disabled man who did not have much education and his family was poor. Judy thought she accepted his condition and he also accepted her impairment so that she could receive sustained support from the reciprocity in the marriage. She described the beneficial relationship she thought worthy of development: “I also thought poor family financial circumstances were fine! Because I had difficulties, he had none so that we could support each other!”
Readers can refer to Figure 7.1.2 for the depiction of Judy’s life in Taiwan and her management of it.
206 Perceptions of the context in which Judy was Perceptions of herself on living a life with a living her live physical impairment Social network Living with an impaired body - Supportive relationships such as family, - Incurable impairment friends - Mobility difficulties Cultural attitudes towards her impairment Dealing with the mind - Rejection: feeling stigmatized in language - Non-fragile mind: accepting living with a physical - Growing acceptance: higher education
impairment, not having hurtful experiences standards of non-disabled people Dealing with the need for support Disability legislation
- Recognizing needed support: such as physical - Better support: subsidies support, financial support
Judy’s management of her life in Taiwan Fostering support
- Seeking out support: such asking for help, overcoming difficulties by herself
- Maintaining harmony in relationships: not bothering others too much
- Ensuring sustainability of support: investing in beneficial relationships
Figure 7.1.2 Judy’s life in Taiwan and her management of it 207 7.1.3 Outcome of Judy’s management of her life in Taiwan: continuing to foster support
Living a life with a physical impairment, Judy kept on overcoming difficulties by herself and seeking out others’ support for her mobility difficulties. Thus, she had the attribute of social networker in the study. Because she only took part in one interview, some important issues might be left without achieving a deeper understanding. However, one significant finding was that Judy was satisfied with the support she had then. She said: “I think living like this is very good! I feel very contented!” Thus, she was considered as a contented social networker.
Readers can refer to Figure 7.1.3 for the theoretical depiction of how Judy lived her life with a physical impairment in Taiwan.
208 Perceptions of the context in which Judy was Perceptions of herself on living a life with a living her live physical impairment Social network Living with an impaired body - Supportive relationships such as family, - Incurable impairment friends - Mobility difficulties Cultural attitudes towards her impairment Dealing with the mind - Rejection: feeling stigmatized in language - Non-fragile mind: accepting living with a physical - Growing acceptance: higher education impairment, not having hurtful experiences standards of non-disabled people Dealing with the need for support Disability legislation - Recognizing needed support: such as physical - Better support: subsidies support, financial support
Judy’s management of her life in Taiwan
Fostering support Outcome of Judy’s management of her - Seeking out support: such asking for help, overcoming difficulties by life in Taiwan herself Continuing fostering support - Maintaining harmony in relationships: not bothering others too much - A content social networker - Ensuring sustainability of support: investing in rewarding relationships
Figure 7.1.3 Theoretical depiction of the iterative process for Judy to live her life with a physical impairment in Taiwan 209 7.2 Yugo as an active social networker: “I am a diplomat!”
7.2.1 Yugo’s life in Taiwan: “Managing good relations with others is my way of existence!”
Living with an impaired body and needing others’ support
Living with cerebral palsy, Yugo found it brought great mobility difficulties, thus, he needed people’s assistance. He described its impact on his daily life as: “[the most difficult influence of the physical impairment on his life] I suppose is mobility difficulties! If I need to go out, I must have either siblings’ or parents’ help”.
Yugo perceived that in living his life with the impairment, he was dependent on ongoing and sustainable support from others. He mentioned that if he leaves home for work in the future, his family support might not be available. Hence, losing current support was his main concern. He said: “If I work in other places, I will need to consider whether someone is available by my side to take care of me!”
Getting more supportive than hurtful relationships
Family as the primary ongoing support
Yugo depended extensively on his family’s physical and emotional support to live his life with a physical impairment. For example, as a masters student at the time of interview, he depended on his parents’ assistance to take him to and from school. Yugo said: “in the morning my mum takes me to school, and in the evening my dad brings me back home”. Also, he was protected well by his family. He illustrated his parents’ protective attitudes towards him: “I think… [they are] still in the protection stage…when they want to go out for something, they would think: we are going out, won’t you come with us? If something happened to you, what would we do [Yugo’s emphasis]?” Family support played a key role in providing the ongoing assistance Yugo needed.
- Conflicts with family
However, Yugo had a great deal of conflict with his family because of the different perceptions of his required support. He said: “I have quite a lot of conflicts with my family!” For example, Yugo and his parents had different understandings of whether to remove the inaccessibility at home. Yugo felt he experienced more inaccessibility
210 at home than at school. He found being outside was accessible. He said: “I encounter more barriers at home instead…Contrarily, I am more ok outside [soft voice]”. Yugo had constantly talked to his parents about this issue and tried to strive for improved accessibility at home. However, due to financial concerns, his parents chose to maintain the present situation. He said: “It’s an economic problem at present! We don’t have so much money…Perhaps my parents are used to it [the current mode of taking care of him] so they think to keep it is the best”.
Yugo and his parents were also aware of the dangers of unsustainable support for him to live his life with the impairment. He told of the unavoidable fact that he would lose the important family support in the future: “it’s impossible that my family always takes care of me like now”. As for solving this issue, his parents held different views from him in planning his career and marriage. In regard to the choice of work, his parents hoped he could get a stable job, such as being a civil servant.
Yugo described his parents’ expectation as: “they hope I can pass the civil service exam! And then if I go to work, it will be more stable. At least I can feed myself. It’s their current wish”. However, he preferred an academic career. He described his wish for work as: “if possible… I want to be a scholar. Although it’s somewhat far away to me so far…if possible I want to teach at school”.
Concerning marriage, his parents thought he needed to marry a foreign woman because they thought that as a result of his impairment, it would be difficult for him to marry a Taiwanese woman and he would need someone to look after him in the future. He described their viewpoints on his marriage: “They think I need someone to take care of me!... the journey in love is very difficult. Because it’s hard to marry, they think I need a foreign spouse!” However, Yugo did not want to get married. He said: “I suppose I’ve given up on the idea of marriage!”
In a word, Yugo’s family provided the most significant ongoing support in his current life but this also brought arguments around different perceptions of how to take care of him. His parents in particular expressed great concern about how to plan Yugo’s future, which resulted in conflicts with him.
Friends as the additional ongoing support
In the context in which Yugo lived, because he had had good relations with his friends throughout his school life, he received good support from them. He spoke of
211 the necessity for him to maintain good relations with them. He said: “because I have mobility difficulties, I need friends’ assistance in my life. Hence, positive interpersonal interaction is very important to me”.
Yugo’s friends provided significant support in his life. In regard to physical assistance to him at school, Yugo said: “they help running errands for me and lifting me in and out of the car”. With regard to attending class, Yugo might not be able to jot down notes in time so he would borrow his classmates’ notes. He recounted: “sometimes the teacher has finished a lecture, but I haven’t finished taking notes. I would tell my friends: excuse me, can I have a look?” Furthermore, friendships make Yugo feel warm and not lonely. For example, Yugo did not like to be alone. Thus, he did not like school holidays. He said: “actually I am afraid of being alone!... when everyone is on holiday, only I am alone” . Hence, he always looked forward to the term beginning because he could have his friends’ company. He described the time with them which made him happy as: “I enjoy very happy and lively interactions with them!”
Other support from the community
In addition to support from Yugo’s family and friends, he also received support from people around him. For example, Yugo did not worry about lacking others’ assistance when he went outside because he found most people were willing to help him. He said: “such as going out, if I needed help, many people give me a hand automatically to lift my wheelchair”. In addition, as a student with a physical impairment, he received support from the disability service at school. He told of how the teachers in the resource room encouraged students with an impairment such as him to seek out others’ help when they were in need. He recounted: “when I was an undergraduate freshman, teachers in the resource room told us the first thing was if we really could not do something, actually schoolmates would be very enthusiastic to help us, so we shouldn’t be afraid!”
Views on cultural attitudes towards his impairment
For the cultural attitudes towards those with an impairment, Yugo felt people with an impairment like him were accepted more than previously, and he was happy about this. For example, Yugo talked about people with an impairment being less devalued than before. He said: “I definitely heard that [disabled people were
212 useless] before! But that was an idea before! Now I can’t say it doesn’t exist, but fewer and fewer people have such an idea now!”
However, Yugo found many non-disabled people, including his father, tended to use offensive words in Taiwanese to refer to those with an impairment. This made him feel uncomfortable. He spoke of this: “I’ve heard ‘soft bone’ [Taiwanese] [to call him], ‘a cripple’ [Taiwanese]....because my father would say so… [these words in] Taiwanese sound very unpleasant to me!”
As a whole, Yugo felt most of the cultural attitudes towards those with an impairment were not hurtful to him, because he perceived impaired people like him to be gaining more acceptance.
Views on the support from disability legislation
Living a life with a physical impairment, Yugo held both good and bad opinions on the support provided by disability legislation. Talking about the positive views on it, Yugo found disability legislation made his living environment more accessible. He said: “I think it is improved quite a lot…at least I go out now, not like before when I needed people to lift the wheelchair. Now I can find a ramp”.
Turning to his negative perspectives on the legislation, Yugo pointed out the support for people with an impairment was not distributed fairly. He said: “I think these [resources] haven’t been nationwide!” He found the available support for people with an impairment was more extensive and of better quality in larger cities. For example, the transportation system in his county was not like that in the big city, which was more accessible for people with an impairment. He explained: “I envy those disabled friends living in Taipei! When they go out, they can take the Metro and a bus! But we have none here!” Additionally, he found students with an impairment living in a big city had more part-time work opportunities provided by their city hall. He felt it was unfair because he also had the ability to do it, but he had no opportunities. He complained: “I care that some [disabled] students, their municipal government provides part-time jobs to them! …It’s about organizing the official forms! It’s very basic! People who can use a computer can do that!” Thus, Yugo thought the legislation did not provide available resources to him in such ways.
In addition, Yugo also felt disability legislation was of little help in protecting the employment rights of people with an impairment. Although there are regulations to guarantee the employments rights for people with an impairment, he found most
213 employers did not obey the regulations, and they did not care if they were fined. Moreover, he did not think the government seriously penalised these people. He said: “In reality,…a boss might not care about this Act and he won’t care if he is fined…Not many employers abide by it. They think paying the penalties is fine and it seems the government doesn’t clamp down often!”
Considering the support from disability legislation, Yugo held both positive and negative viewpoints on it. As a whole, he kept an optimistic attitude to there being further improvement in it in the future. He concluded: “The legislation is making progress. Take it easy! I think we [people with an impairment] will have that one day [that we have better support]! We will!”
Having a non-fragile mind
The above section, “it is more than just the impairment”, depicts Yugo living with an impairment and recognizing that he needed others’ support. It also demonstrates that he received more support than hurt from the context in which he lived. Because he did not have deeply hurtful experiences like the fortress ladies, he retained his optimistic personality. He explained: “Maybe I haven’t been deeply hurt! … So to some extent I am more optimistic and positive”. He was willing to talk about his impairment with people around him, such as talking with his friends and me. He said: “I don’t think these questions [in the interview] are threatening to me because my friends also asked me, too! I told them exactly as it happened!”
Also, because Yugo accepted living with the physical impairment, his thoughts and feelings were not disturbed by it. Yugo reflected on this in the interviews, and recounted: “I think it depends on whether you accept yourself!...So these are not taboo topics for me!” Therefore, having a non-fragile mind, Yugo did not see stigma as something hurtful to him. For example, he understood why children stared at him in amazement. He explained: “I don’t care how children see me and let them see…because they must be curious and think that of course people can walk, so why do I sit in a chair and need someone to push me!!”
Summary
Using “it is more than just the impairment” tells how Yugo perceived having others’ ongoing and sustainable support as the most important thing in his life in Taiwan, and his thoughts and feelings (mind) were not undermined by the
214 impairment. His most important source of support was from his family and friends. Generally speaking, he felt the context in which he lived was supportive. However, he was wary of lacking support in the future, as he understood the impossibility of his family support being sustained (Readers can refer to Figure 7.2.1 to see Yugo’s life in Taiwan). Hence, Yugo developed strategies to foster the support he needed to live his life with his impairment. This is explained below.
215 Perceptions of the context in which Yugo was living his life
Social network
- Supportive relationships such as family, friends, Perceptions of himself on living a life with a physical
disability services impairment
Cultural attitudes towards his impairment Living with an impaired body
- Rejection: use of offensive language - Mobility difficulties
- Growing acceptance: improved social values Dealing with the mind
towards people with impairment - Non-fragile mind: accepting living with a physical
Disability legislation impairment, not having hurtful experiences - Better support: improved accessibility Dealing with the need for support - Useless: such as limited support, - Recognizing needed support: such as getting others to help,
employment rights not guaranteed company
- Fear of unavailability of support in his life: losing current
support
Figure 7.2.1 Yugo’s life in Taiwan: “Managing good relations with others is my way of existence!”
216 7.2.2 Yugo’s management of his life in Taiwan: fostering support
Yugo was good at maintaining good relations with people around him so as to receive support from them. He said: “Managing good relations with others is my way of existence!” In relation to his most important family support, because he had a great deal of conflict with his parents, he had to balance this relationship with the strategies of arguing for support and maintaining harmony in the family. For other social relationships, Yugo devoted himself to creating a supportive context to live in. He used several strategies for this. These included seeking out support as much as possible, maintaining harmony in his social network, and increasing the sustainability of support. Each of these is described below.
Managing his conflicts with family
Yugo received significant support from his family in his daily life. However, he also had many arguments with his parents. He dealt with such relationships by arguing with his parents for the support he wanted. He explained: “Sometimes I argue with them [for the support he wanted]!” However, Yugo was aware that he should not annoy his parents because their support was important to him. Hence, he moderated his behaviour by having insight into his parents’ views, and then he could let it go. He said: “I think my parents are old after all. To change their ideas, they’ve been imbued so long, I think it’s very hard to change their ideas!... I think I am very relaxed about…letting it go at that!” When he really could not balance his uncomfortable feelings with them, Yugo chose to compromise for a while in order to minimize the conflicts temporarily. He said: “I compromise with them!” Thus, he could retain their support.
Seeking out support as much as possible
For other social relationships, Yugo would evaluate whether he could get support from people around him. He observed people sensitively for this purpose. He said: “I am quite good at observing people’s expressions… At first, I chat with them. During our talk, I also observe what kinds of people they are”. If Yugo felt he could build further relationships with people, he would create some opportunities for this. He described how he did so when he made friends with schoolmates in the general class. He explained: “sometimes when they sit next to me, I maybe initiate contact by borrowing something, and then we start a conversation”.
217 In addition, Yugo asked for people’s assistance quite often to solve his mobility difficulties. For example, when he ventured outdoors, he would ask whether his family could help him with this. He commented: “if I needed to go out today, I would find some people and ask them, so I might go out, can you help me?” As for his difficulties in taking an exam, he would also discuss this issue with his teacher so as to get support. He said: “If there were several subjects I could not finish in time, I might tell the teacher my request, and he/she sometimes would arrange another classroom for me on purpose”. Furthermore, Yugo also sought friends’ company while he was alone. He told of how he used the Internet to maintain their company on school holidays. He explained: “at this time [being alone], msn and messenger are my means of survival!”
Besides seeking out support in his social network, Yugo was willing to be involved in creating a supportive context in Taiwan for people with an impairment to live. For example, he thought using social protest could be helpful for fighting for rights for people with an impairment. He told of his idea as: “My experience is I think that society indeed discriminates against us to some extent. And then we strive for our own rights by social protests. I agree with it very much!” Furthermore, Yugo pointed out that people with an impairment should also overcome difficulties by themselves by constructing a supportive context. He expanded: “people with a physical disability have to make a good showing by themselves!... to make efforts to do what one should do!” Thus, Yugo thought from the social protests and efforts of people with an impairment, a more supportive context could be achieved.
Maintaining harmony in social network
In terms of keeping peaceful or good relationships, Yugo reflected on what kind of personality was helpful for good relationships. He commented: “I am quite optimistic, so my relations with others are really not bad!” He was easy to get along with. He spoke of how he interacted with people around him: “When I go out, I smile and then when I see people, I say hello to them”. He also related how he was willing to communicate with his friends. He said: “if they have any complaints about me, I hope they can tell me directly, it’s ok! Because people cannot be perfect, they always have flaws!” Moreover, in the important relationships for him, such as friendships, Yugo provided support to his friends in a way he was competent to do. He depicted the reciprocity with his friends as: “they help running errands for me and lifting me in and out of the car. And I help them with
218 their assignments. Sometimes I also have to play a role as a psychological counselor to resolve their emotional problems”.
Ensuring sustainability of support
Yugo was concerned about having sustainable support to live his life with a physical impairment in the future after his parents died. Hence, he was aware that he had to learn how to take care of himself independently. Therefore, when he went out, he would think about how to take public transport alone in the future. He said: “I would think about what I should do if I went there by myself”. Also, in order to plan his future, Yugo was careful with his money in order to have financial support sustained. So, he was not keen to keep a pet because he thought it wasted his money. He said: “I am not interested in keeping a pet!...because a pet…maybe I need to spend on foodstuff or perhaps it needs injections….I am very frugal!...
I’m thinking about the future! I think when I am old, no one will take care of me, and I might need money!”
Because Yugo did not want to have an intimate relationship, which his parents expected him to have, he would focus on developing other helpful relationships such as friendships which would bring support. He said: “even if I try hard to get a girl friend, it will be a fruitless investment. So it would be better to invest in more beneficial relationships with other people”. In addition, Yugo wished to have friends’ support when he was old. Hence, he made a joke about going to a nursing home with his single friends when they became old. He said: “anyway we can’t find [intimate partners] so we can go to a nursing home together! …At least there are friends taking care of each other afterwards!” Thus, Yugo was more enthusiastic about managing his friendships than other relationships because he perceived the outcome of such relationships would be more productive.
Readers can refer to Figure 7.2.2 to see what Yugo’s life in Taiwan looked like and how he managed it.
219 Perceptions of the context in which Yugo was
living his life Perceptions of himself on living a life with a physical
Social network impairment
- Supportive relationships such as family, friends, Living with an impaired body
disability services - Mobility difficulties
Cultural attitudes towards his impairment Dealing with the mind - Rejection: use of offensive language - Non-fragile mind: accepting living with a physical
- Growing acceptance: improved social values impairment, not having hurtful experiences towards people with impairment Dealing with the need for support
Disability legislation - Recognizing needed support: such as getting others to
- Better support: improved accessibility help, company
- Useless: such as limited support, - Fear of unavailability of support in his life: losing current
employment rights not guaranteed support
Figure 7.2.2 Yugo’s life in Taiwan and his management of it Yugo’s management of his life in Taiwan Fostering support - Seeking out support: such as overcoming difficulties by himself, sensitive
observation, asking for help, fighting for support, compromising to retain support
- Maintaining harmony in relationships: such as reflective insight, easy to get
along with, reciprocity
- Ensuring sustainability of support: such as learning to take care of self 220 independently, careful with money, investing in beneficial relationships 7.2.3 Outcome of Yugo’s management of his life in Taiwan: continuing to foster support
Yugo received a certain amount of support from the context in which he lived, such as from his family and friends. His management of fostering support was successful. He was happy about the outcome, and continued to actively foster support in the context in which he lives. For example, as a result of being a student at the time of interview, he maintained and built good relations with friends at school. He described himself as “a diplomat” because he knew so many people at school. He said: “because I find I know more people in other faculties than mine, I would make a joke and say: because I am a diplomat!” He described the flourishing outcome of the friends he had at school as his territory. He talked about his territory in his faculty as: “my territory is quite broad, including schoolmates either senior or junior to me”. Also, he spoke of his territory in other places like the resource room and general knowledge courses as “I know people either from the resource room or some general knowledge courses in the uni”. Yugo seemed happy and enjoyed making friends because he found such social experiences could help him become a more excellent and experienced diplomat. He described: “Through my interactions with friends, it not only lets me learn others’ strengths but also increases my experiences in interpersonal interactions”.
In summary, having good relations with people so as to receive others’ support is vital for Yugo to live his life with the impairment. Thus, he continued actively fostering support for this purpose. He said: “Managing good relations with others is my way of existence!” This resulted in having others’ support such as physical assistance and the company he needed from the context in which he lived. It became an iterative process for Yugo to actively foster support for his life in Taiwan. Thus, using “it is more than just the impairment”, he was considered an active social networker (see Figure 7.2.3).
221 Perceptions of the context in which Yugo was
living his life Perceptions of himself on living a life with a physical Social network impairment
- Supportive relationships such as family, friends, Living with an impaired body disability services - Mobility difficulties Cultural attitudes towards his impairment Dealing with the mind - Rejection: use of offensive language - Non-fragile mind: accepting living with a physical - Growing acceptance: improved social values impairment, not having hurtful experiences towards people with impairment Dealing with the need for support Disability legislation - Recognizing needed support: such as getting others to help, - Better support: improved accessibility company - Useless: such as limited support, - Fear of unavailability of support in his life: losing current employment rights not guaranteed support
Yugo’s management of his life in Taiwan
Fostering support
Outcome of Yugo’s - Seeking out support: such as overcoming difficulties by himself, sensitive management of his life in observation, asking for help, fighting for support, compromising to retain support
Taiwan - Maintaining harmony in relationships: such as reflective insight, easy to get
Continuing fostering support along with, reciprocity
- An active social networker - Ensuring sustainability of support: such as learning to take care of self
independently, careful with money, investing in beneficial relationships 222
Figure 7.2.3 Theoretical depiction of the iterative process for Yugo to live his life with a physical impairment in Taiwan 7.3 Mary as an anxious social networker: “If no one is here, what should I do!?”
7.3.1 Mary’s life in Taiwan: “Now it’s tolerable!... …but how about the future?”
Living with an impaired body and worrying about the availability of others’ support
Mary’s physical impairment brought many mobility difficulties in her everyday life. For example, she could not stand for too long so she had trouble with home chores, such as cooking and doing the laundry. She described her difficulties in standing as: “I can’t stand too long!...otherwise my hand would be paralyzed. … And because one of my feet is very loose and has no strength, if I stand for too long, the other foot will become twisted”.
Furthermore, Mary perceived the incurable impairment had some associated impacts. For example, she encountered decreasing strength as she aged so she would have more difficulties in her life. She was worried about this. She told of her concern with panic: “When I get older, I will have less physical strength so I will have more difficulties… Now I don’t have enough physical strength [Mary’s emphasis]. I can’t help it [Mary’s emphasis]!” Also, Mary pointed out that she lived with pain because her impairment brought additional discomfort, like constant vomiting in cold weather stopping her from eating. She told of this discomfort as: “Since the year before last, if I felt cold, I would vomit… keep vomiting and I couldn’t eat anything!”
Her deteriorating physical situation made her worry about available physical support from people around her when she was sick. For example, when her husband was alive, he could help her up from the toilet when she was unable to do so. After her husband died, she was fearful of being unable to do this by herself. She explained: “If no one is here, what should I do!? [sounding anxious]…Sometimes I could not stand up [from the toilet], and I become more nervous, and then I am more unable to stand up [Mary’s emphasis]!”
223 Losing important support
After Mary married, she moved to her husband’s family and she was the main person taking charge of the family finances because her husband was unwell with a mental illness. Therefore, Mary worked and her husband played an important role as a help for Mary. She described his support in multiple aspects of her life: “My husband helped me taking over my shift…He would help me do the housework……he would help me do trivial things!” Furthermore, her mother-in-law assisted her in keeping the house and taking care of her two young children so she was able to work with ease. She was grateful for her assistance. She said: “At that time my mother-in-law was younger, she helped me [doing housework]....She was nice to me… she looked after both of my children until they grew up”. As Mary’s children grew older, they could assist her in doing simple work. She described: “when the children were young, if I had some easy tasks, they could help me”. In addition to family support, government subsidies also played an important role in assisting Mary’s family. She told of how such subsidies helped her to raise her children: “They [her children] have been raised by the government all the way”. Hence, Mary received important support from both her family and subsidies for her life in Taiwan.
After her parents, mother-in-law, and husband passed away and her children grew up, she found she had lost much of the family support she had had before. For example, she felt lonely because no family was around her. She said: “My husband died in May…when I go home at night, of course, I am always alone! My girl studies in another place, and my boy is in the military”. Also, because of the death of Mary’s husband in 2006, there was extra money coming into her bank account. As a result of her not noticing the amount of money in it, it exceeded the eligibility threshold for the government subsidies a family could have. Therefore, she was informed that she had lost the subsidies at the time of the last interview in 2007. Mary said:
Because my husband died and then we got some allowances for it, we didn’t withdraw but kept money in the account. Wow! It exceeded the limit! I’ve got the letter, saying too much money in the account. So we don’t have the status [of low-income family] this year!
To conclude, Mary encountered losing physical strength with her aging, the great support from her family and the subsidies. She felt threatened by a lack of support to live her life with a physical impairment in the future. She said: “Now it’s tolerable!... …but how about the future?”
224 Other support and hurt from the community
To live her life in Taiwan, Mary pointed out that she had got support from the community but also had several hurtful experiences from employers. How she perceived support and hurt from her social network is described below.
First, Mary received significant assistance from people around her, including her friends, colleagues, school teachers and the disability organization she was involved in. For example, she had good relations with her friends, and she received physical assistance and company from those friendships. She described how one of her friends helped her at work. Mary said: “she sometimes takes over my shift! When I sometimes have more work, I call her at times”. In addition, because of Mary’s impairment, she was unable to sweep at a bus booking office so the employer did not want to hire her at first. Fortunately, because of a bus driver’s assistance to do this for her, it helped her to keep this job. Mary told of this gratefully: “He said to give me a working opportunity! So he went here and swept!”
Moreover, Mary had received school teachers’ generosity several times. She recalled one of the experiences at the time when her children went to primary school; there was a local benefit for low-income families that exempted these children from the payment for private after-school classes. Mary spoke of it thankfully: “The teacher said the after-school class was free for low-income families [Mary’s emphasis]!…They didn’t charge us money and they were really nice [Mary’s emphasis] !”
In addition, Mary was a member of a local disability organization. She liked to participate in the group because it provided a great deal of support to her. For example, she saw such a group as helpful to strive for rights for people with an impairment. She said “It fights for some of our benefits! See what benefits we have and what we need”.
Turning to the hurtful experiences in her social network, Mary felt people with an impairment like her had disadvantages at work. She found she had to work longer than non-disabled people but got paid less. She described the unfair treatment: “I am low-cost labor!” Additionally, from her several working experiences, she found the employers were strict with her, because they never praised her performance but only criticized it. This hurt her. She said: “They don’t mention what I do well! But if I did something wrong, they would… [keeping silent, and looking sad]”.
225 Her experiences of cultural attitudes towards her impairment
As for how non-disabled people saw her impairment, Mary had been hurt because she felt she was inferior to others. She recalled that her children were teased and bullied at school because their parents had an impairment and were poor. She told of this sadly: “Handicapped people’s children,…like my kids, perhaps because our family situation was also poorer, they [her children] were looked down upon!…I felt hurt [Mary’s emphasis]!...They [her children] felt inferior to others!”
On the other hand, Mary perceived having fewer stigmatizing experiences than before. She found more parents nowadays would teach their children not to laugh at people with an impairment so that she found people with an impairment were stigmatized less than before. She illustrated this change by saying: “Now children would ask their mothers what happened to these people, and mothers would answer so there is less teasing now”.
Her experiences of the support from disability legislation
On her views on the disability legislation, Mary said: “the legislation nowadays is much better!” Mary received significant support from the legislation, such as subsidies, services for people with an impairment including services from a disability organization and having home care services to clean her place, as well as improved accessibility. Hence, she thought the legislation improved a lot because it provided better support than people with an impairment had ever previously had. She said: “Did the handicapped before enjoy such benefits! No!...So of course the legislation nowadays is much better!”
Furthermore, Mary’s social life changed dramatically after she accessed the service of assistive technology for people with an impairment. For example, because of having a three-wheeled scooter, she was able to work. She said: “because I have a scooter, I can go to work!” Also, with it, she could go out to have fun like non-disabled people and was not confined to home. She talked about how excited she was to have a scooter: “now I have a scooter to ride anywhere…before having it, I looked at the outside world and was very envious of people who could go out!…Without it, you don’t expect that people will take you out with them!” Moreover, she found the disability organization she was involved in had a specialized bus for people with a physical impairment and it enabled impaired people like her to go out for fun together. She said: “When we have a specialized
226 bus for people with mobility difficulties, we can go out and have fun with others; otherwise can we sit on a tourist coach with people?” Because of the improvement of assistive technology, Mary experienced having more opportunities to socialise, and to have fun. Hence, disability legislation contributed to broadening her social network and made her feel included in the community.
Turning to the employment rights for people with an impairment, Mary did not feel the legislation protected their rights well in this respect because she found she worked harder than non-disabled people but received unequal treatment. She explained: “I think we should have a protection. Although I have difficulties in some aspects, I work hard at the things I can do [Mary’s emphasis]! I work hard as usual, why am I treated worse [Mary’s emphasis]?”
For Mary, she thought the legislation provided a great deal of support in her life, such as giving her the subsidies for many years, having the disability organization to run services for people with an impairment, and improved accessibility and assistive aids. These contributions the legislation made influenced her social network significantly, which made Mary feel included in society and able to work. However, she felt dissatisfied with the unfair treatment at work. She thought the legislation should guarantee employment rights for people with an impairment.
Having a non-fragile mind
Talking about her feelings of being a person with an impairment, Mary did not mind people calling her a handicapped person because she accepted living with it. Hence, she saw it as a kind of classification to let people know her situation. She said: “we were born like this. This [to call us the handicapped] makes people categorise us! This is a kind…a kind of differentiation. So, we want to apply [for disability benefits] so that people would understand”.
Summary
The above illustrates Mary’s life in Taiwan by “it is more than just the impairment”. It shows having others’ support was critical for her to live her life with the impairment. She had received significant support from the context in which she lived, such as her family, friends, work colleagues, the disability organization and disability legislation. But she also felt hurt by the discriminatory behaviour of employers and Taiwanese culture.
227 At the time of interviews, she was faced with losing the important support from her family and the subsidies. At the same time, with her aging, she found her physical strength gradually declining. Thus, Mary was anxious about receiving others’ support in the future.
Readers can refer to Figure 7.3.1 to see Mary’s life in Taiwan.
228
Perceptions of the context in which Mary was living her life Perceptions of herself on living a life with a physical Social network impairment - Hurtful relationships such as discrimination everywhere, Living with an impaired body loneliness - Mobility Difficulties - Supportive relationships such as family, friends, - Living with pain work colleagues, school teachers, disability services - Incurable impairment Cultural attitudes towards her impairment Dealing with the mind - Rejection: feeling inferior to others - Having a non-fragile mind: accepting living with a physical - Growing acceptance: higher education standards impairment of non-disabled people Dealing with the need for support Disability legislation - Recognizing needed support: getting others to help, company - Better support: services for people with an impairment, - Fear of unavailability of support in the future: losing current subsidies, improved accessibility support, aging, being a burden - Useless: employment rights not guaranteed
Figure 7.3.1 Mary’s life in Taiwan: “Now it’s tolerable!... …but how about the future?”
229 7.3.2 Mary’s management of her life in Taiwan: fostering support
Having others’ support was important for Mary to live her life in Taiwan, both in the present and the future. Also, having a job was critical for her to be able to look after herself. She managed her need for support by exerting herself to seek it out, maintaining good and peaceful relationships with people, and ensuring sustained support. These are illustrated below.
Seeking out support as much as possible
Because Mary was facing a loss of significant family support at the time of the interviews, she sought out available physical support to assist her with daily chores. For example, she used the free home care services for people with an impairment to supplement the time her children spent cleaning her home. She said: “sometimes the person from the home care services cleans my house…usually does the half of the cleaning, and when my kids come home, they clean the rest”.
In addition, Mary also compromised to retain important support for her life. For example, having a job was important for her to be able to take care of herself. Hence, although she got unequal treatment at work, she chose to work hard to keep the job. She said: “I work hard and don’t ask for leave!”
Furthermore, Mary thought fighting for support was helpful for creating a supportive context for people with an impairment to live. Hence, she had participated in a demonstration held by the disability organization she joined for seeking out more benefits for people with an impairment. She said: “using a protest so that the voice of the disadvantaged can be heard! …I have been to take part in a demonstration!... They asked me to walk together, to show our objection! To strive for some benefits!”
Maintaining harmony in her social network
Mary thought that having others’ support sustained was important for her to live her life with a physical impairment, so maintaining peaceful relationships was important for her. Thus, she was an easy-going person and did not like to have arguments with people. She said: “I am easier to get along with”. She thought people with an impairment should be optimistic so that people would like to be with
230 them. She explained: “Don’t think people are always treating you badly, or you will seem really hard to get along with…if you make yourself look pitiful, people see you like this, why would they want to be with you?” Moreover, Mary thought one should not impose on people too much, and then they would be more willing to provide assistance for longer. She said she did not ask for her colleagues’ help when they were busy. She said: “it’s ok that sometimes people help you without extra trouble!... If they [Mary’s colleagues] are busy and you ask them to do something, they would not like it!” From her personal experiences, Mary found being optimistic and asking for help at the right time enabled her to receive a reasonable level of support from people around her. She related one of her work experiences to illustrate the supportive outcome: “when I worked in yarn manufacturing, my colleagues were quite helpful,…we needed to take clothes here for work…they would help me move them [materials and tools for making yarn], and didn’t refuse!”
As for some distressing relationships, Mary had thoughtful insights into the difficulties she encountered in these relationships. Then, the harmony in these relationships was not endangered and support might be sustained. For example, talking about her family relationships, Mary perceived her siblings saw taking care of her as a burden so she needed to have her own family. She said: “if I had not married, who would feed me?!” Mary accepted the fact that a woman with a physical impairment had disadvantages in having a non-disabled spouse. Thus, she gave the idea of having a non-disabled spouse up, and decided to marry a man with a mental illness. She concluded: “of course, I want to marry a better man! A non-disabled man. Although I want them, do people want me? …Right, it’s not so fair but it’s my destiny”.
Mary also used the strategy of reflective insight to manage the unequal treatment at work. She accepted the inequality at work because she thought the employers were at least still hiring her, so she should not argue too much about the unfair treatment because her physical impairment did make her working performance worse than non-disabled people. She noted: “Compared with non-disabled people at work, there’s a difference. So we can’t blame people for not hiring us!”
Ensuring sustainability of support
With her aging and loss of significant family support, how to get others’ support such as physical assistance and company became a major concern for Mary. She understood that when her children grew up, they might have their own
231 considerations for their future. Therefore, she might receive less support from them and she was also worried about being a burden to them. She explained:
When the children grow up, they will not necessarily be with me. If they are with me, I will have more company. Otherwise [uh]…I have the impairment! If they make money and also take care of me, then it will tend to have problems!
Therefore, Mary thought she needed to be careful with her money for her contingent use in the future. She noted: “I must save some money…otherwise, if I need a large sum of money some other day, where will it come from?”
Readers can refer to Figure 7.3.2 to see what Mary’s life in Taiwan looked like and how she managed it.
232 Perceptions of the context in which Mary was
living her life Perceptions of herself on living a life with a physical Social network impairment - Hurtful relationships such as discrimination everywhere, Living with an impaired body loneliness - Mobility Difficulties - Supportive relationships such as family, friends, - Living with pain work colleagues, school teachers, disability services - Incurable impairment Cultural attitudes towards her impairment Dealing with the mind - Rejection: feeling inferior to others - Having a non-fragile mind: accepting living with a physical - Growing acceptance: higher education standards impairment of non-disabled people Dealing with the need for support Disability legislation - Recognizing needed support: getting others to help, company - Better support: services for people with an impairment, - Fear of unavailability of support in the future: losing current subsidies, improved accessibility support, aging, being a burden - Useless: employment rights not guaranteed
Figure 7.3.2 Mary’s life in Taiwan and her management of it Mary’s management of her life in Taiwan
Fostering support
- Seeking out support: such asking for help, compromising to retain
support, fighting for support, overcoming difficulties by herself
- Maintaining harmony in relationships: such as easy to get along with,
being optimistic, not bothering others too much, reflective insight
- Ensuring sustainability of support: careful with money 233 7.3.3 Outcome of Mary’s management of her life in Taiwan: continuing to foster support
Mary had continued relying on herself and others to get physical assistance, financial assistance and emotional support to live her life with a physical impairment. She thought people with an impairment should try to solve the difficulties they faced by themselves; if they could not, and then they should seek out support. Therefore, she worked hard to support her family, and also relied on assistance from others, like the subsidies and people’s generosity, to manage her family’s living expenses. Furthermore, because of her impairment, she also needed others’ help in supporting her role as a mother, a wife, and a worker. Mary had been concentrating on fostering support by seeking out support and maintaining harmony in her social network to live her life with her impairment. Hence, she was categorized as a social networker because of her continuous fostering of support in her life.
However, because of the death of her husband and her children’s growing up, she encountered losing the most significant family support. In addition, she found she was getting weaker as she aged. Unfortunately, the subsidies she had had for many years were cancelled at the last time of interview. Because of one disaster following another, she felt fearful of lacking enough support to live her life with the impairment in the future. Thus, she became an anxious social networker. She told of her concern at lacking support from others when she was in need: “If no one is here, what should I do [sounding anxious] !?”
Readers can refer to Figure 7.3.3 for the theoretical depiction of Mary’s story.
234 Perceptions of the context in which Mary was
living her life Perceptions of herself on living a life with a physical impairment Social network Living with an impaired body - Hurtful relationships such as discrimination everywhere, - Mobility Difficulties loneliness - Living with pain - Supportive relationships such as family, friends, - Incurable impairment work colleagues, school teachers, disability services Dealing with the mind Cultural attitudes towards her impairment - Having a non-fragile mind: accepting living with a physical - Rejection: feeling inferior to others impairment - Growing acceptance: higher education standards Dealing with the need for support of non-disabled people - Recognizing needed support: getting others to help, company Disability legislation - Fear of unavailability of support in the future: losing current - Better support: services for people with an impairment, support, aging, being a burden subsidies, improved accessibility
- Useless: employment rights not guaranteed
Outcome of Mary’s management of
her life in Taiwan Mary’s management of her life in Taiwan
Continuing fostering support Fostering support
- An anxious social networker - Seeking out support: such asking for help, compromising to retain
support, fighting for support, overcoming difficulties by herself
- Maintaining harmony in relationships: such as easy to get along with,
Figure 7.3.3 Theoretical depiction of the iterative process of being optimistic, not bothering others too much, reflective insight 235 Mary’s life in Taiwan as an anxious social networker - Ensuring sustainability of support: careful with money 7.4 Hilda as a hapless social networker: “If I had died at the time when I got hurt, it wouldn’t cost so much money!”
7.4.1. Hilda’s life in Taiwan: “To live every day is waiting for death”
Living with an impaired body and always needing others’ support
Her spinal cord injury brought severe mobility difficulties to Hilda. It made Hilda unable to move her body voluntarily. In addition, she found it was impossible to recover so this situation would remain the same until she died. She explained: “I lie like this every day, and I can’t move…To live every day is waiting for death”. Furthermore, her impairment made her life one of pain. Because she cannot move her body, much air was accumulated in her abdomen, which gave her pain every day. She told of how the pain disturbed her sleep at night. She said: “I have abdominal pain all night, so I take medicine once or twice at midnight…If it continues, I will not fall asleep all night!”
Because of Hilda’s impairment, she needed to depend on others’ assistance every day. She confirmed: “If no one took care of me, how could I live!” As a result, Hilda’s family hired a 24-hour foreign carer to take care of her. She told of her reliance on the carer’s support: “to cook, wash clothes, feed me, and wash my face. She needs to do everything…Even scratching my head and ear, I depend on her!”
Getting insufficient support from the context in which Hilda lived
Hilda was worried about the poor financial situation of her family because she found no one could earn money, yet everything cost money. In addition, this situation had worsened since she became impaired. She outlined the financial difficulty of her family as:
No one can make money! My husband has had a stroke so he can’t make money… Neither can I. Neither can my son [because he is in jail]. So who can feed us?... No one can make money, but everything costs money [Hilda’s emphasis]! …The situation has been like this for almost ten years [since she became impaired]!
236 The expenditure in her family included general living expenses, the cost of her and her husband’s medical treatment and the cost of medicines. Moreover, the expense of hiring a foreign carer to take care of her was a heavy one for her family. However, they had no choice. She said: “hiring a foreign carer like her costs twenty-one thousand dollars per month,…but we can’t help it!”
Hilda and her husband received subsidies totalling ten thousand dollars every month. Hilda complained that the subsidies they had were not enough for them to pay their living expenses and the heavy expenditure on medical treatment. She said:
We get subsidies of 10,000 dollars in total! To pay bills, meals, gas and so on uses it up. And we need to see a doctor. That costs a lot! ... What it gives us is limited, and it can’t give us enough!
Also, Hilda had not enough money of her own to pay the carer’s wages. Hence, her daughters supported her with this. She explained: “Those daughters pay her [the foreign carer] salary, so it’s enough!...one of my daughters gave five thousand dollars!...the youngest one, two to three thousand dollars!” Sometimes, she receives generous assistance from her neighbours and a charitable organization.
She said: “in January, my neighbours next door gave me money!...My husband one thousand dollars and me too! As for the support from the charitable organization, Hilda felt this was low. She stated: “The volunteers come once a month, to send their regards to me! That’s all…They help us without money, but provide some rice”.
In addition to the financial support from her family, Hilda needed significant physical assistance from her family in her daily life. For example, the eldest daughter who lived closest to Hilda assisted her in doing the regular in-home rehabilitation exercises, and taking care of her daily life. Hilda described her daughter’s help as: “she lifts me out and in [for Hilda’s rehabilitation exercise], buys food, does many things. She does everything!”
Hilda needed at least two people to move her. She said: “if I went out, I would need two or three people to move me!...To move me both in and out!” Hence, as this would bother others and bring financial concerns, she seldom went out. She told why it was impossible for her to be involved in any disability organization. She said agitatedly:
237 “Who would push my wheelchair there?...You think about whether it is convenient for me [Hilda’s emphasis]!... I need people to lift me in and out of a car, and I also need to take a wheelchair with me. That’s really troublesome!...and the cost of a taxi is very expensive…I don’t know how much it will cost!”
Thus, Hilda stayed at home all day and lived a boring and unsatisfying life. She spoke of her daily activities in the morning: “I do the rehabilitation exercises at 8:30 am and go into the bedroom at 10:30 am. After that, I watch TV. Otherwise, what can I do?” Although Hilda liked to have contact with people, she could only wait for their visits. She explained: “I can’t go outside and I can’t go to talk with someone. Only when people come, and then I talk to them. That’s all”. Thus, the impairment made her live a lonely life because it stopped her doing things she wanted to do.
The above, “it is more than just the impairment” demonstrates how Hilda mainly depended on her family’s physical assistance and financial support to live her life with the impairment. Additionally, Hilda mentioned she also needed their emotional support, like company. Once when her second daughter was unwilling to support her to live at home, she suggested Hilda move to a nursing home. However, Hilda refused to go because she was afraid of losing her family’s company. She spoke of this and cried: “Last time my second daughter wanted to make me live in a nursing home, I cried not to go! If I live there, I will lose company [crying]”.
Having a non-fragile mind
Hilda did not feel upset when people talked about her impairment, and she had accepted the fact that she became impaired in the accident and attributed the cause simply to bad luck. She said: “I had bad luck!” In addition, Hilda liked to have people’s company and to chat with people. She said: “Yes! I like to talk to people!” However, because of her impairment, she could only wait for people’s visits, such as her relatives and neighbours. Thus, it showed her impairment did not make her feelings and thoughts vulnerable like fortress ladies to isolate themselves and not interact with people. Thus, although Hilda lived with a serious impairment, she had accepted that she had to live with it so she did not have a fragile mind.
Summary
To sum up, Hilda described the influence of her impairment on her family as: “our family is broken!” Hilda felt sorry for being such a burden to her family. She told of
238 this sadly: “Now…they are encumbered with assisting at my expense. They also need to eat and to raise their children”. Also, because of her serious impairment, she felt anguish about the painful days she still had to live. She was despairing and wished she had died at the time when she received the injury. She said: “To live everyday is to wait for death. If I had died at the time when I got hurt, it wouldn’t cost so much money!”
Readers can see Figure 7.4.1 for the theoretical depiction of Hilda’s life in Taiwan.
239
Perceptions of the context in which Hilda was living her life Perceptions of herself on living a life with a physical
Social network impairment
- Hurtful relationships such as loneliness, other Living with an impaired body
people’s unwillingness to support -Incurable impairment
- Supportive relationships such as family, - Living with pain
disability services - Mobility difficulties
Disability legislation Dealing with the need for support
- Useless: limited support - Recognizing needed support: getting others’ to help, company - Fear of unavailability of support in the future: being a burden
Dealing with the mind
- Non-fragile mind: accepting living with a physical impairment
Figure 7.4.1 Hilda’s life in Taiwan: “To live every day is waiting for death”
240 7.4.2 Hilda’s management of her life in Taiwan
Because of Hilda’s serious physical impairment, she could not actively seek out support like the other social networkers. The strategies she used to foster support for living her life with the impairment were trying to minimize others’ physical assistance, and being careful with her money. However, the results of her fostering of support were unsuccessful. She was still encountering a shortage of support in her life.
Maintaining harmony in social network
Although Hilda could not avoid needing her family’s physical assistance, she tried to minimize it as much as she was able. Hence, Hilda chose to decrease the times she went out. For example, she asked her son-in-law to go to the hospital to get her medicine and then it would not bother other people to take her there. She said: “[if I go to the hospital] I needed two people at least to go with me!...[so] my son-in-law will go to the hospital to get the medicine”. Thus, she would not bother her family too much so as to decrease the burden of their taking care of her.
Trying to ensure sustainable support, but failure to do so
The strategy Hilda used to manage the financial difficulty in her family was to be careful with money. Therefore, instead of going to a hospital regularly for rehabilitation, Hilda purchased a rehabilitation machine so that she could do it at home. In this way, she could save the cost of hiring a taxi. She said: “I bought the rehabilitation machine … To do it in a hospital is the same as at home! And how do I have money to do rehabilitation in a hospital? It costs four to five hundred dollars for a taxi”. However, being careful with money seemed to do little to alleviate the financial difficulties in her family. She said: “we economize on our expenditures but when things go wrong we still have to pay for repairs!”
Readers can refer to Figure 7.4.2 to see what Hilda’s life in Taiwan looked like and how she managed it.
241 Perceptions of the context in which Hilda was
living her life Perceptions of herself on living a life with a physical impairment
Social network Living with an impaired body
- Hurtful relationships such as loneliness, other -Incurable impairment
people’s unwillingness to support - Living with pain
- Supportive relationships such as family, - Mobility difficulties
disability services Dealing with the need for support
Disability legislation - Recognizing needed support: getting others’ to help, company
- Useless: limited support - Fear of unavailability of support in the future: being a burden
Dealing with the mind
- Non-fragile mind: accepting living with a physical impairment
Figure 7.4.2 Hilda’s life in Taiwan and her management of it Hilda’s management of her life in Taiwan
Fostering support
- Maintaining harmony in relationships: such as not
bothering others too much
- Ensuring sustainability of support: careful with 242 money 7.4.3 Outcome of Hilda’s management of her life in Taiwan: continuing to foster support
Because of her physical impairment, Hilda could not live without others’ support. She said: “I can’t move and turn my body over so I depend on others’ help…If no one took care of me, how could I live!” Hence, she needed to continue fostering support from the context in which she lived. Unfortunately, her failure to get sufficient support much of the time meant that she felt she had become a burden to her family. With the failure to have enough support, Hilda could only wish for more support from others’ generosity, such as the story of her poverty to be reported by the media so that her family could come to the public’s notice. She said:
My story is never reported!... If it were, people would read it, and they would know. Otherwise, how would they know we are sick! How would they know I am handicapped so I lie in bed, and none of my family can earn anything!
Thus, her life had allowed her to become a hapless social networker just waiting for death, and she had no hope for her future. She told of how living with the impairment for her was desperate. She said: “it’s suffering, I lie like this every day, and I can’t move… but whom I can talk about my suffering to?...To live every day is to wait for death. If I had died at the time when I got hurt, it wouldn’t cost so much money!”
Readers can refer to Figure 7.4.3 for the theoretical depiction of Hilda’s miserable story.
243 Perceptions of the context in which Hilda was
living her life Perceptions of herself on living a life with a physical
Social network impairment
- Hurtful relationships such as loneliness, other Living with an impaired body
people’s unwillingness to support -Incurable impairment
- Supportive relationships such as family, - Living with pain
disability services - Mobility difficulties
Disability legislation Dealing with the need for support
- Useless: limited support - Recognizing needed support: getting others’ to help, company
- Fear of unavailability of support in the future: being a burden
Dealing with the mind
- Non-fragile mind: accepting living with a physical impairment
Hilda’s management of her life in Taiwan
Fostering support Outcome of Hilda’s management - Maintaining harmony in relationships: such as not of her life in Taiwan bothering others too much Continuing fostering support - Ensuring sustainability of support: careful with - A hapless social networker money
Figure 7.4.3 Theoretical depiction of the iterative process for Hilda to live her life in Taiwan as a hapless social networker 244 7.5 Discussion of social networkers
“It is more than just the impairment” illustrates that having others’ support is the most important thing for social networkers to live their lives with their impairment. Their feelings and thoughts were not disturbed by having an impairment because they all accepted living with it. It further highlights that the support they needed included others’ physical assistance, financial assistance, as well as emotional support. Social networkers continued fostering support by seeking out support, maintaining harmony in their social networks and ensuring sustainability of support.
Their level of contentment with the support they received influenced their happiness. Judy was the one who felt most contented with her life; Yugo seemed contented with his current life but worried about having others’ support in the future; Mary was encountering losing support so she felt anxious about her current life and future; Hilda was the one who felt hapless in her life because she had gone through a serious shortage of support for some time.
The similarities and differences among four social networkers are detailed below.
1) Similarities with each other
Social networkers had the consistency of having a non-fragile mind as their impairment did not make their mind vulnerable but made them perceive their need for others’ support. This is described below.
a) Having a non-fragile mind
Social networkers saw dealing with the support they needed as the most important aspect of living their lives with the impairment. Hence, these social networkers were not like the fortress ladies who easily got hurt in their social relationships. The four participants showed that they accepted living with a physical impairment so their thoughts and feelings were not like those of the fortress ladies who were vulnerable to their social milieu. Furthermore, they managed their social relationships better than the fortress ladies because good relations were helpful in getting others’ support or in ensuring it was sustainable. Yugo’s words confirmed this point. He said: “Managing good relations with others is my way of existence!” Hence, the four social networkers in the study showed they had a non-fragile mind to live their lives in Taiwan. This is in stark contrast to the fortress ladies’ lives.
245 b) Fostering support
Having others’ support was important for social networkers. All experienced family as a great source of support to them. They identified three types of support received from their families. These were physical, emotional and financial assistance. For example, Yugo needed his parents to take him to and from school, Mary wanted to have her family’s company and Hilda’s daughters assisted in paying the all-day carer’s wages.
Thus, how to make others’ support sustainable was crucial for social networkers. They perceived that they needed to keep harmonious relations with support providers and tried not to have conflicts with these people. For example, when Yugo had arguments with his parents, he would try not to displease them. In addition, he would be considerate and see things from his parents’ viewpoint. He explained that because his parents and he had different educational backgrounds, he could understand why his parents had different views from him. He illustrated this: “Maybe their notion still stays at the senior or junior high school level because their education level is just at senior high school after all”. Having considerate understanding allowed his uncomfortable feelings to pass quickly. He said: “I think I am very easy to…let it go at that!” Likewise, Mary was considerate in her understanding of why she received unequal treatment at work because her impairment made her work performance worse than that of non-disabled people. This made her feel better in comforting the hurt from the employers’ unfair treatment. She recalled her work experience in a yarn factory:
Like doing the knitting, I still need someone to help me to take a bundle of yarn. The boss hired non-disabled people, and they could do it, but I couldn’t…Although there are some things I can do, I still need people’s assistance. That’s the difference between non-disabled people and me!
The four social networkers also thought that not imposing on support providers as much as possible was a way to maintain harmony with them. For example, Hilda chose to stay at home rather than to ask to go out so as to avoid troubling her family. She said: “Going by car takes up other people’s time, driving me to and fro…so we shouldn’t bother them so much”.
To conclude, having sustained support was important for social networkers to live their lives with an impairment. Hence, they knew the significance of managing good social relationships, and they managed the important relationships skilfully and well.
246 2) Distinguishing characteristics: facing different shortages of support
The four social networkers showed four different levels of satisfaction with their support. Judy was most satisfied with the support she had. She said: “I think living like this is very good! I feel very contented!” However, she did not mention her expected support needs in the future. Perhaps, it was because she was only involved in one interview so she had no further opportunity to talk about her plans for the future; Yugo was mostly satisfied with his level of support, and he felt he managed the support he needed well and kept fostering support actively in his life. He described himself as a diplomat. However, he was concerned that if his parents died, he would lose significant support in the future. Hence, he worried about this. He described one of his coping strategies as being careful with money for planning the future. He said: “I think when I am old, no one will take care of me, and I might need money! Then I will really need money to solve it!”
Compared with Judy’s and Yugo’s satisfaction with their current level of support, Mary and Hilda were worried about it. Because Mary encountered losing family support and her aging, she started to worry about the problem of having others’ support available. She said: “If no one is here, what should I do [sounding anxious] !?” Thinking about her future, she had no ideas for how to retain her children’s support and worried about more difficulties brought about by her aging. She said: “when I was younger, I was more able to do things, and could ask the children to help me with trivial things…but how about the future?”
As for Hilda, because her severe impairment made her unable to seek out support like the other three social networkers, she just stayed at home to be taken care of by a 24-hour foreign carer. Hence, she had been experiencing a serious shortage of support to live her life with the impairment and this situation was getting worse. Thus, she lived with worries about having more support and also feeling guilty about being a burden to her family. This had made her become hopeless about the future. She said: “To live every day is waiting for death”.
To summarize, “it is more than just the impairment” tells four social networkers’ stories. It shows the similarities they had with non-fragile minds, and how they continued fostering support to live their lives with the impairment. Moreover, it also indicated the differences among them in terms of how contented or worried they felt about the support they had. This would influence their life quality and how they planned their future.
247 CHAPTER 8 THE MIND MAN
Venice is the only participant who is considered as a mind man. His story is illustrated by “it is more than just the impairment” below.
8.1 Venice’s life in Taiwan: “I don’t care that my feet or my hands are not good because these are not important!”
Living with an impaired body as a mission for the development of mind
Because he suffered from polio, Venice knew he had an incurable impairment in his life. He said: “I know the situation of my feet is impossible [to be cured]”. His impairment caused him mobility difficulties and he could not reach things. He described: “my feet are unable to stand so that my hands can’t reach something at a high level”.
He saw living with the impaired body as a mission which gave him a task to complete in his present life. He referred to this process as ‘striving for self-actualisation’ which he thought was necessarily challenging. He illustrated:
When people are born, they have a mission…[so] we don’t minimize ourselves!...that means if you had difficulties today, if your feet were unable to move today, are you supposed to give up? Not necessarily!...If you were a perfect person, then that doesn’t need to strive for self-actualisation! Right? If you live comfortably and have good days, this doesn’t account for striving for self-actualisation! To strive for self-actualisation must be very exacting!
Venice saw ‘striving for self-actualisation’ as the purpose for which people pursued their religious beliefs. He believed every religion was constructed based on this purpose, but just named differently and then used different religious methods to achieve this goal. He explained:
In fact, all religions… have the same purpose….That’s to strive for self-actualisation…but everyone may use different methods! People might simply define self-actualisation as Buddhism, but actually it’s a kind of method. If we define it as Christianity, it’s also a kind of method! The goal of the method is to achieve self-actualisation!
248 ‘Self-actualisation’ for Venice was an individual learning process which gradually accumulated over his various incarnations in order to develop his spirit to a higher level. He said: “what so-called self-actualisation is just my individual learning process…It might need years of striving for self-actualisation [to advance my mind to a higher level]”.
Venice thought that through the striving for self-actualisation, the level of his mind in this life had achieved a higher level. He used Sky12 to describe the level of his mind. He said: “my foundation in a previous life was in the Sky Eighteen [Venice’s emphasis]!” He wanted to continue utilizing his mind to attain a higher level. He said: “perhaps my mind could be superior!” Venice believed his mind was attached to this impaired body and he could use his body to do many things for this purpose. He explained how the mind worked on a body. He explained: “The mind attaches itself to a body…with hands and feet to move…It makes the body work and do many things”. Hence, Venice did not see himself as being disabled by the impairment because the mind could control his body and he had an intact mind. He said: “As for one’s body,…not everyone is necessarily complete! The most crucial thing is the completeness of one’s mind. That’s important!” Venice dealt with his feelings and thoughts without concern about the influence of having a physical impairment itself. This was different from fortress ladies and social networkers. Therefore, Venice was categorised as having a strong mind.
Needing others’ physical support but realizing this could not be sustained
Because of his mobility difficulties, Venice perceived he needed others’ physical assistance in his life. His understanding of this was that he could only get temporary assistance from people. So long as people did not see helping him as a burden, they were willing to do so. He spoke of this: “Of course for these bits and pieces, I need non-handicapped people’s help,… but this is temporary dependence so they can tolerate it! I have to have this understanding and perception! As for long time dependence, it’s impossible!” Therefore, Venice thought taking care of a person with a physical impairment was a burden to non-disabled people so he did not expect he would get sustained support in an intimate relationship. He explained: “When handicapped people depend on their partners for everything, one day they will run out of patience...so they will leave”.
12 “Sky” is used in Buddhism as a way to describe the level of one’s mind.
249 In summary, Venice perceived living a life with a physical impairment, he needed others’ support for his difficulties in moving around, but he found their support could not be sustained.
Disability legislation influenced his life significantly
Disability legislation had considerable influence on Venice’s life in Taiwan. He talked about how policy change made him leave the disability organization; how his impaired friends’ working experiences made him feel less supported in employment rights for people with an impairment; and how services provided by the legislation helped him understand how to take care of himself. These influences of the disability legislation on his life are detailed below.
- Experiences of participating in a disability organization
First, Venice experienced how a policy change in disability legislation brought about a loss of non-disabled people’s support in a disability organization. In the early days, when he participated in an organization for people with an impairment, there were non-disabled members in that group. After the new policy was released, he found all non-disabled members left. According to Venice’s description:
Because it was at very initial stage of the establishment of the organization, there were not many members and some non-handicapped people joined it!...but after some time, the government stipulated that the position of organizers was restricted to handicapped people, not those without a handicap [Venice’s emphasis] …the non-handicapped people left the organization.
After that, he found the group lost support from these non-disabled members. He recalled the terrible situations without non-disabled people’s assistance in the organization: “these organizers were all handicapped, what could we do?...because I knew that when non-handicapped people were organizers, they handled the task very well. But later these organizers were handicapped, and they could not accomplish the tasks!”
In addition, after the policy changed, he had distressing relationships with other members with impairments because he started to feel that getting along with them was not easy. He thought the problem was that “Many handicapped people didn’t think they were handicapped!” Venice found these people joined the group
250 just to gain more social resources. He related this to one of the members: “He joined our handicap group because he had no choice and he wanted to gain social welfare!” Hence, he found the interactions among members became like this: “they plotted against each other [Venice’s emphasis]!” Additionally, those members who did not see themselves as a handicapped person held a superior attitude towards other members with a physical impairment. Hence, Venice felt hurt in getting along with them because these people would gossip about others’ weaknesses, such as his. He said: “they thought they were superior to others with a handicap so they would talk about others’ weaknesses… I might get hurt…because I didn’t like others gossiping about me!”
Finally, he felt frustrated about this group and so decided to leave. He said: “I’ve seen a lot like this [members with an impairment plotting against each other]! ... It disappointed me! So I don’t want to join these disadvantaged minority groups! ... It has been more than ten years since I quit”.
Venice thought the problems incurred by losing the support of non-disabled members and the bad relationships among the rest of the members with a physical impairment resulted from the new regulations. He concluded: “I think if possible, it would be better not to have such inflexible regulations… they incurred troubles! So I said the problem was that it’s restricted to handicapped people as organizers!” So, in such a way, the legislation actually had a negative effect on Venice’s social life – even if it was unintentional.
- Views on employment rights
Second, Venice heard his friends with a physical impairment complaining frequently about the disability legislation in terms of employment. He said: “Many of our handicapped friends said there was a lot of inequality of treatment!” For example, the government also allowed other disadvantaged groups like single-parent families and aborigines to be eligible to apply to run a Taiwan lottery13 shop. Hence, people with an impairment did not feel supported because they were at a distinct disadvantage. He said: “all disadvantaged people were eligible for this, including aborigines and single-parent families. After this, are those handicapped really taken care of?” Furthermore, Venice found people with an impairment were disadvantaged in promotion when they worked together with non-disabled people. He related this to his friend’s working experience in a bank:
13 One of the aims of Taiwan lottery is to ‘look after more handicapped, aborigines and single- parent families with low income with the profits the Public Welfare Lottery gained’ (Taiwan Lottery Co., 2006)
251 “In regard to promotion,…they thought because you were a handicapped person, people could do it but you couldn’t”. He thought it was unfair to compare the working performance of an impaired person with non-disabled people; an impaired employee had no chance to be recognized. He argued: “when a handicapped person runs a race with non-handicapped people, he is always behind them! You cannot see an excellent handicapped person at all!” Thus, from his impaired friends’ working experiences, Venice held negative views of the legislation to ensure employment rights for people with an impairment.
- Experiences of accessing services for people with an impairment
Finally, Venice had one supportive experience from the legislation. This was from his experience of accessing a free rehabilitation service for people with an impairment. Venice used this service to ask the physical therapist how he could take care of himself. He said: “I asked him a lot of questions, and he told me how to exercise”. Venice found it was useful because the therapist taught him how to do the rehabilitation exercises to maintain or improve his physical situation that he did not understand before. He said: “We didn’t know we could exercise before… He taught me to use my feet to exercise,…I think it’s very useful!…and won’t cause us to be handicapped twice!” Because Venice felt supported by this service, he expressed his willingness to have this service again. He said: “when the social worker asked me whether I wanted this service again, I said YES!”
Feeling rejected by cultural attitudes towards his impairment
Venice perceived cultural attitudes towards his impairment as excluding him from society in several ways. First, Venice felt blamed by Taiwanese culture because of many non-disabled people’s understanding of those who had an impairment as the result of reincarnation and karma. He thought this was wrong. Because Venice thought that if one had an intact mind, a person’s life was intact no matter whether he had an impairment. He illustrated:
I think after people are born, the important thing is their spiritual life. As for the [impaired] body, that is not necessarily attributable to karma...because even if one breaks a leg, even the blind or a cripple, their life is still intact…so I don’t think my handicap is due to what I did in a previous life or karma and reincarnation!
252 Moreover, Venice did not like people calling him a person with a disability because the word ‘disability’ translated in Chinese implied a person had problems in his body and mind. He expressed his displeasure about this: “I felt puzzled that we are called ‘people with a disability’… We don’t have problems of body and mind!” Thus, Venice gave me a hint that he wanted to be called a handicapped person rather than a person with a disability in the interviews. He said: “When you asked me about disability, I didn’t understand it at all! If you asked me about the needs of the handicapped, I would understand it”.
In addition to cultural attitudes towards his impairment from the religious and language aspects, Venice pointed out many non-disabled people saw people with an impairment as being inferior to others so they thought impaired people were useless. Venice told of his experience of how a non-disabled person used the word ‘driving’ to imply his inability both to drive a car and to have a sexual life because this person thought impaired people were assumed not to succeed. He said:
Someone saw me driving and he asked me: How do you drive! You don’t have feet; it’s strange how you drive?...And then he asked me: if you went to…a red-light district, how would you do it?!...So the handicapped like us also give people a feeling: you are all out of order!
Summary
From the above, ‘it is more than just the impairment’ depicts Venice’s life in Taiwan. It shows how Venice saw having a physical impairment as a mission for him to complete himself in this life. This was to help him to advance his mind to a higher level. Because of the impairment, Venice perceived he needed others’ help for things he could not do. However, he was aware he could only ask for short-term assistance from people so that people would not feel that helping him was a burden.
In addition, disability legislation had a significant influence on his life. The legislation exerted negative influences on his social life and his views on employment rights. However, Venice benefited from a rehabilitation service for people with an impairment. He felt the legislation was supportive in helping him to live independently.
Also, Venice perceived many non-disabled people did not understand his impairment because they interpreted it as karma and reincarnation, used an
253 inappropriate word ‘disability’ to label him, and saw him as being useless. He felt such cultural attitudes towards his impairment made him feel rejected by society.
Readers can see Figure 8.1 for the theoretical depiction of Venice’s life in Taiwan.
254
Perceptions of the context in which Venice was
living his life Perceptions of himself on living a life with a Social network physical impairment - Hurtful relationships such as discrimination everywhere Living with an impaired body Cultural attitudes towards his impairment - Incurable impairment - Rejection: such as feeling blamed, feeling stigmatized - Mobility difficulties in language, feeling inferior to others Dealing with the mind Disability legislation - Strong mind - Better support: services for people with an impairment Dealing with the need for support - Useless: limited support, employment rights not guaranteed - Recognising needed support: getting others to help
Figure 8.1 Venice’s life in Taiwan: “I don’t care that my feet or my hands are not good because these are not important!”
255 8.2 Venice’s management of his life in Taiwan
Venice indicated two main strategies to live his life with the impairment. One was to foster his mind because he saw having an impairment as a mission in this life for him to strive for self-actualisation. The other strategy was making sure he was able to support himself because he perceived he could not get sustained support from others in the context in which he lived. These strategies Venice used are detailed below.
8.2.1 Fostering his mind
- His reflection on the meaning of having a handicap
Venice saw living with an impaired body as a mission to advance his spiritual development in this life. He thought he should face this task, and then went on to complete this task so as to do the following one in the next life. He said:
We should cherish what we learn now, because it is what we should face. To face it is a kind of task! When we finish the task, we will have to learn a new one in the next life!
Hence, Venice put great emphasis on fostering his mind. He reflected on the meaning of being a person with a physical impairment. He told of the influence of the impairment on his mind as: “If my handicap was an important part to me, it should be my own self-reflection [Venice’s emphasis]”.
From his self-reflection on the meaning of having an impairment, he developed three positive interrelated ideas. First, Venice did not see having impaired feet as a defect in his life but just bringing some mobility difficulties. He interpreted:
A handicap is not necessarily a defect in life [Venice’s emphasis]…if because of having a handicap, I can’t do anything, then it’s a defect!... But handicap for me…is just my feet are unable to stand and allow my hands to take something at a high level.
Second, because of the impairment, he needed to work out the difficulties brought about by impairment in his everyday life. Hence, living with the impairment made him think more and then do more than non-disabled people. He said: “Since we have been handicapped and our feet have problems, we have more opportunities to think more and then do more instead!”
256 Third, Venice thought that he had some advantages from having an impairment. For example, his impaired feet stopped him from committing a crime. It saved him from being in jail. He told of this happily:
Because of having a handicap, we have difficulties! I think that’s not bad! At least with [unimpaired] feet , …I might go out everywhere and then showing off!...I might do…something bad…And then today I know my ability is worse than others! …So I just do things I am equal to…So I would say: if my feet were good today, I might have been in jail for a long time!
- Breaking through the handicap
Because of his reflection on the meaning of having an impairment for him, he thought trying to find a way to cure his impaired feet was futile so he should not be bothered by it. He said: “I know the situation of my feet is impossible [to be cured]!…the incomplete part, leave it alone, that doesn’t matter”. Instead, he thought he could not be defeated by the restriction of impairment in his life. He said: “Because I know I am handicapped, I must make myself move freely and I can’t be completely handicapped because of it!” Therefore, he thought he should figure out how to overcome the difficulties brought by the impairment in his life. He explained: “Although I have difficulties in my feet, my hands are ok and my thinking model is also very good and normal! And then when I do anything, I will figure it out to break through!”
He thought of using aids to solve the problem of his inability to walk in his life. He said: “because I have difficulties in mobility, I think of what we can use to replace [the function of] my feet”. For example, he used crutches to provide assistance for his impaired feet in moving around, and then he was no different to those who had healthy feet. He explained: “I use crutches! ... This is like using something fake to substitute for a broken bowl, to glue it together. This accounts for … using them to make up for the handicapped feet as completeness!”
8.2.2 Making sure he would be able to support himself
Because Venice found people considered providing long-term assistance to an individual with an impairment as a burden, he could not get sustainable and ongoing support from others. Hence, he tried to minimize the need for others’ help and maximize how to get sustainable support from himself in his daily life. For example, in considering and planning how to take care of himself as he aged,
257 Venice actively asked the physical therapist from the free disability service questions to learn how to take care of himself. He said: “This is for thinking about how to take care of myself so that I propose questions!”
Furthermore, Venice would avoid taking on a burden so that he did not have the responsibility to take care of others. Hence, he decided not to marry. He described his fear of having a family as taking on a burden with this comment: “The money you earn isn’t enough for yourself, and you… need to take care of your wife and children, won’t you be tired?”
See Figure 8.2 for the theoretical depiction of Venice’s life in Taiwan and his management of it.
258
Perceptions of the context in which Venice was
living his life Perceptions of himself on living a life with a physical Social network impairment
- Hurtful relationships such as discrimination everywhere Living with an impaired body
Cultural attitudes towards his impairment - Incurable impairment
- Rejection: such as feeling blamed, feeling stigmatized - Mobility difficulties
in language, feeling inferior to others Dealing with the mind
Disability legislation - Strong mind
- Better support: services for people with an impairment Dealing with the need for support
- Useless: limited support, employment rights not guaranteed - Recognising needed support: getting others to help
Venice’s management of his life in Taiwan
Fostering the mind Figure 8.2 Venice’s life in Taiwan and his management of it - Self-reflection on the meaning of having a handicap
- Breaking through the handicap
Fostering support
- Ensuring sustainability of support: learning to take care of
himself independently, not getting married
259 8.3 Outcome of Venice’s management of his life in Taiwan: continuing to foster his mind
Because Venice put great effort into fostering his mind, the outcome for him to live his life with a physical impairment was continuing to foster his mind. Because of this, he did not rely on any religions but rather on himself to strive for self-actualisation because he believed he was God. His explanation of this was:
I am God, and so are you!...Because the mind…is the God that can’t be seen or touched!...because you [the mind] attach to a body, you don’t know you are excellent! When you leave it, you become excellent because you are God essentially.
Venice used his impaired body as a tool for the journey of developing his mind to a higher level. He explained: “now I use my personal body to strive for self-actualisation … I [his body] am just one of the appliances for striving for self-actualisation”. As a result of continuing to foster his mind, he had a superior mind because he gained the spiritual power from his mind to be able to face difficulties in his life. He said: “Many people are afraid of encountering difficulties … But I am not … you must have a spiritual power to support. It is unimportant who gives you this power, but it exists in your mind”. Furthermore, he did not see having an impairment as significant issue in his life. He explained: “Because the main thing is our mind, our whole mind is intact, that’s good! I don’t care that my feet or my hands are not good because these are not important!” Because of having a superior mind, Venice became a mind man who lived his life and enjoyed his life with a physical impairment in Taiwan.
See Figure 8.3 for the theoretical depiction of the iterative process of how Venice lived his life with a physical impairment in Taiwan as a mind man.
260 Perceptions of the context in which Venice was
living his life Perceptions of himself on living a life with a
Social network physical impairment
- Hurtful relationships such as discrimination everywhere Living with an impaired body
Cultural attitudes towards his impairment - Incurable impairment
- Rejection: such as feeling blamed, feeling stigmatized - Mobility difficulties
in language, feeling inferior to others Dealing with the mind
Disability legislation - Strong mind
- Better support: services for people with an impairment Dealing with the need for support
- Useless: limited support, employment rights not guaranteed - Recognising needed support: getting others to help
Venice’s management of his life in Taiwan
Fostering the mind Outcome of Venice’s management of his - Self-reflection on the meaning of having a handicap life in Taiwan - Breaking through the handicap Continuing fostering his mind Fostering support - A mind man - Ensuring sustainability of support: learning to take care of
himself independently, not getting married
261
Figure 8.3 Theoretical depiction of the iterative process for Venice to live her life in Taiwan as a hapless social networker SECTION 4 WHAT ARE THE IMPLICATIONS OF FINDINGS?
This study sought to discover how disability is experienced in Taiwan, from seven Taiwanese people with a physical impairment. Using the social model as a hammer, my understanding of disability has been challenged. Moreover, I see study participants as having expertise in disability from their lived experience in the everyday life. Hence, three important discussion points have emerged in the study. The first is my reflection on my personal growth of understanding what disability is; what this understanding contributes to the recognition of the capacity of people with a physical impairment as having agency in their lives, and that of the importance of building alliances with them. These will be addressed in the first chapter of discussion. The second chapter aims to discern how well-suited the adopted conceptual framework is to exploring and understanding study participants’ lived experience of living a life with a physical impairment. This chapter also explores the implications of three important lived experiences from the study participants. Finally, the contribution of the developed theory, “it is more than just the impairment”, to the expert knowledge of study participants is explored, along with a consideration of how this theory contributes to a more holistic understanding of disability.
Three discussion chapters are organized and presented in such a way as to highlight the connections among them. It is suggested that readers either read these chapters in order or pick up the theme of the chapter they are interested in.
Before continuing, some limitations of the study should be acknowledged. First, these findings should not be generalized to all Taiwanese people with a physical impairment, as they apply only to these study participants with a physical impairment. Furthermore, the issues of gender-, tribe-, or age-related experiences, the differences between those Taiwanese with congenital or acquired impairments, and experiences for those who live in an institution for impaired people, as well as the expansion of the types of impairments are not specifically addressed in this study. The contribution of the study is that it provides a deeper understanding of disability from the lived experiences of how people with a physical impairment live their lives in Taiwan; also, it recognizes people with an impairment as having expertise in disability and gives them an opportunity to have their say. CHAPTER 9 THE RESEARCHER’S REFLECTION ON
UNDERSTANDING DISABILITY
The first part of this chapter is my personal reflection on my growing understanding of disability during the study. Following that, the need to develop service user directed services and to build alliances with people with an impairment are recognized; how to achieve a better relationship with the users is also addressed.
9.1 Who are the experts in disability?
My personal journey in this PhD study has caused my understanding of disability to undergo significant change. The most important thing I have come to realize is that having an impairment is just one part of the person and not the whole person. Hence, honestly speaking, I have found I do not agree with applying the individual (or medical) model of disability to understand people with an impairment, which was the core of my previous training as an occupational therapist or biomedical engineer. Now, I see my self as a learner in the disability field who needs to learn from the experts who have an impairment because I believe their expertise in disability can broaden my views on disability. This position can benefit both parties. Because of this, service providers can be better able to provide the services that service users need. Also, power might more easily be shifted from the dominant professionals to achieving a more harmonious balance between the two sides. This would result in a service able to more readily meet its service users’ needs.
I remember while I was conducting the in-depth interviews, that I thought my understanding of disability had shifted from the individual model of disability towards a social model of disability which I used as a hammer to see participants as having expertise in their disability. However, I was too influenced by my previous training to do so; that is I still unconsciously applied the individual model to see their impairment as problematic and I still thought they should seek medical intervention to fix their individual problems. Barnes and Mercer (2003) say that professionals who absorb themselves in this model see disability as a health concern. That was the personal bias I brought to the process of interviewing. Some influential talks with participants made me realize I still focused on their impairment as ‘a health issue’. What I learned from them are detailed below.
First, for participants, living a life with a physical impairment is ‘more than just the impairment’. Having an impairment might have other meanings rather than setting the goal to cure or rehabilitate. For example, Venice reflected on his
263 impairment in this way: “If my handicap was an important part to me, it should be my own self-reflection [participant’s emphasis]”.
Also, under the training of an individual model of disability, I was used to asking service users questions related to their impairment, what Oliver (2009) referred to as “something wrong with them” (p. 44). I did not sense how they felt about these questions. For example, I kept asking Joyce how she managed to go to the toilet with her foot impairment. She replied: “I felt very embarrassed and I thought talking about this is very private to me”. Likewise, Pearl told of how her privacy was often intruded upon because of people’s curiosity about her life with an impairment. She explained: “Wearing the leg brace is very private for us, and so is how to dress!” From the interviews with participants, I suddenly found I had not been aware of this before because I thought I was an expert in understanding their impairment, and I thought I could solve service users’ problems with their daily activities. Hence, I failed to treat them with adequate respect, and to understand how they felt about the process of medical treatment, which many participants experienced as professional dominance in their lives. Oliver (2009) challenged rehabilitation professionals who often made this kind of mistake, as I myself had. He said: “Questions concerning the therapeutic nature and effectiveness of rehabilitation are often asked; questions concerning the way rehabilitation often forces impaired individuals to do things that they would not freely choose to do for themselves are almost never asked” (p. 37). Furthermore, Oliver (2009) maintained that the power control of the rehabilitation professionals over their service users was “oppressive to disabled people and an abuse of their human rights” (p. 38). I found many medical professionals were like me in that the power imbalance between them and their service users is often seen and presented in such an unthinking way.
In addition, I was prejudiced against my service user participants so my views on people with an impairment were restricted. While conducting the in-depth interviews, I raised the issue of whether people with an impairment were more emotionally dependent than non-disabled people and was eager to get participants’ confirmation. Venice rejected this idea because he found this was not restricted to people with an impairment. Instead, he thought because I had confined my interviews to this group of people, my perspective on this was limited. Venice’s talk impressed me very much. He said:
When you talk to me about this [emotional dependence], …I am not surprised at all!... Because not only do people with a handicap have
264 such dependence but also non-disabled people, even more so. It depends on what angle you use to discover it [participant’s emphasis]!
Such a response from Venice caused me to reflect and adjust my narrow view of seeing people with an impairment. In effect, diversity exists in a group of people with an impairment, just the same as in a group of non-disabled people. Hence, some people with an impairment might be vulnerable because of some social factors such as fortress ladies, but others could be strong as the mind men.
Summary
Bearing the Heideggerian interpretive phenomenology as theoretical perspective in mind (readers can see Chapter 3), I naturally brought my own preconceptions to the interview process. I understood that I could never fully escape doing this when interacting with participants but I should be sensitive and reflexive in what I was saying and doing (Larkin, Watts, & Clifton, 2006). Furthermore, because I used the social model of disability as a hammer to recognize participants as having the knowledge of their own impairment, I was able to listen to them. Combining the perspectives from the Heideggerian interpretive phenomenology and the social model of disability enabled me to learn significantly from their stories. This helped me to move on in a new journey of building another better understanding of disability. On this journey my views on impairment and disability opened up because my thinking was not restricted to the individual model of disability, and I was able to position myself as a learner in the disability field. Below is my reflection, jotted down after analysing the data from the in-depth interviews.
Even though I was studying disability, I found I did not understand it well. Because I still used my own perspectives to interpret it, like the fortress stuff. But that’s how I learned from them, that was my being-in-the-world, so I brought my preconceptions to the interviews. Sometimes people are blind so that they can’t see their shortcomings, aren’t they? Afterwards, in the ongoing analysis, I found I had changed! I tried to treat them as ordinary people to understand their story! Hence, I found their social relationships (family, marriage, and other general social relationships) were quite important to them. Because it’s about life!
Because my reflexivity helped me to recognize my preconceptions about disability, I realized I did not see them as research partners in the early interviews but still as clients. Hence, this reflexivity encouraged me to change because I found that only
265 when I respected them as being experts in disability, would I have the chance to develop a deeper understanding of their lives with the impairment (Larkin et al., 2006). Because of this change, I was able to develop the grounded theory “it is more than just the impairment”.
One significant thing I have learned from the seven participants is that all of them dealt intelligently with their lives with an impairment. It made me think about who should take control of their lives – medical professionals or themselves? Thus, in the next section, this issue will be discussed.
266 9.2 Who should take control of the lives of people with an impairment?
According to how participants managed their lives in Taiwan, they were grouped into the fortress ladies, the social networkers , and the mind man. Readers can refer to Chapters 6, 7 and 8 to see how I applied the developed theory to depict their lives. Although these participants had different life experiences regarding their impairment, they showed actively how they took control of their lives, and how they made decisions. For example, the fortress ladies built the fortress against people to protect their fragile mind, the social networkers fostered support from their social relationships to get help, and the mind man set the goal to pursue his spiritual development instead of focusing on his incurable feet. They demonstrated extraordinary strategies to actively manage the difficulties in their lives. These findings were far beyond my imagination because the developed theory was a “deeper understanding” of what disability was” which tells the lives of people -- very much how they made life choices, and designed their lives. “It is more than just the impairment” illustrates how participants were active agents in their lives and who took control of their lives. When I was an occupational therapist, these people would be physically impaired patients and I would just know their lives in a snapshot way. I could not believe their lives were so complex and they were able to handle the many difficulties they faced.
Turning to service provision, who takes control and who makes decisions in health and social care services? In the UK, the government encourages people with an impairment to extend choice and control over public services (Finlay, Walton, & Antaki, 2008; Rabiee & Glendinning, 2010). It is argued that enhancing choice-making opportunities in services can improve well-being and improve the quality of life (Finlay et al., 2008; Rabiee & Glendinning, 2010; Soresi, Nota, & Wehmeyer, 2011). The developed theory shows that the participants were capable of being “primary causal agents” who had volition to make conscious choices in their lives (Soresi et al., 2011). However, in service provision, a power imbalance between professionals and their clients is common (Finlay et al., 2008). This is, in part, because of the influence of the individual model of disability, whereby professionals are supposed to have the expertise in disability. In such a paradoxical way, professionals have power and they take control over their service users, such as by denying service users’ decisions in healthcare (McDaid & Delaney, 2011; Riddington, Mansell, & Beadle-Brown, 2008). However professionals exercise the power, which brings the danger that they are liable to ignore or respect and
267 encourage their service users choices (Soresi et al., 2011). The Social Exclusion Unit in the UK (2005) captured this sentiment with their motto “Improving services, improving lives” (Finlay et al., 2008, p. 350). This short phrase highlights the urgent need in Taiwan to develop more inclusive services which allow people with an impairment to extend choice and control for meeting their needs rather than professionals’ or others’ needs. The practice of service user directed service should allow more communication and discussion on the service users’ expectations, rather than just offering “Hobson’s choice” (McDaid & Delaney, 2011, p. 741). This will be helpful in developing an inclusive environment starting from the disability services. Otherwise, disablism such as professional dominance will still bully people with an impairment.
In this section, I recognize the capacity of people with impairments to make decisions about their need to live their lives with an impairment rather than focussing on how service providers think they should lead their lives. I argue that service providers need to build alliances with people with an impairment when providing relevant services. In the next section, I discuss the significance of this relationship and then how to achieve it.
268 9.3 How to build better relationships with people with an impairment?
Through my reflections on my personal growth in understanding disability, I found that the interactions between people with an impairment and professionals might be a form of oppression of impaired people because of the imbalance of power. Many professionals tend to think they have the expertise in disability, and do not recognize their service users’ expertise on their own lives (McLean, 2005; Paterson & Hughes, 2000; Shakespeare, 1996, 2006). For example, Pearl said: “Because they [service providers] have their profession, but in their profession they are not us. We have experienced our life situation ourselves, but they just want to know our physical condition”. Professionals mainly focus on how to repair or restore the dysfunction of physical or psychological components without seeing their service users as real human beings with agency who can actively make decisions, and without seeing the whole picture of how the impairment influences their lives. Hence, the understandings held by those living with an impairment have not tended to influence the knowledge held by health professionals working in this area because of the powerlessness of the former. Such relationships are oppressive and disempowering for people with an impairment (Abberley, 1995, 2004). Moreover, professional understanding of disability has been limited and incomplete.
The theory that has evolved from this study shows that being disabled is more than just the impairment. For example, it reveals some participants’ experience of “professional dominance” in their lives. This includes depersonalization, abuse, and lack of empathy (See section 5.1.2.1 for more details). According to Swain et al. (2003), “professional rhetoric is in terms of altruism and acting in the best interest of disabled clients” (p. 136). However, it seems that many people with an impairment argue they have suffered through being viewed as being “tragic, deficient and inferior and professionals have sought to eliminate them (through abortion before they are born), remove them from society (through institutionalization), and to cure or approximate them to ‘normal’ through surgery, drugs and rehabilitation” (Swain et al., 2003, p. 134). In this way, many people would perceive that relationships with professionals are disempowering and thus many of them would question the usefulness of professionals in their lives (Simpson, Hornby, Davies, & Murray, 2005).
Building alliances with people with an impairment is a way of removing such an oppressive inequality of power relationships, and of helping to bring about their inclusion in society (Abberley, 2004; Shakespeare, 2006; Swain et al., 2003).
269 Otherwise, professionals are the parasites of people with an impairment, using these people to advance their own careers and not work in the best interests of people with impairment (Swain et al., 2003). Before applying any strategies to change such an unequal relationship, the key thing I think professionals should keep in mind is this: “in order to enhance health for people with disabilities, it is important to realize that individuals with disabilities are not inherently unhealthy or ill and that disability and health can coexist” (Kim & Fox, 2006, p. 485). Holding this perception of people with an impairment, I would like to introduce several ways for professionals to build alliances with them. These ideas are from my reading of related literature and my reflection on participants’ words.
First, professionals need to locate the expertise of impairment and disability in two sides, and the expertise of people with an impairment to the forefront (Sullivan & Munford, 2005). Joyce explained this point from her experience: “No one understands my body better than me. Because I’ve had this for a long time, I know the consequences if I do something, but the doctor might not know because he hasn’t really known me for a long time”. Sullivan and Munford (2005) argue “it involves disrupting the assumption that all ‘expert’ knowledge resides with professionals and that that lived knowledge has an inferior status and is not as valued as so-called professional knowledge” (p.29). This does not mean professionals’ knowledge has no significance for people with an impairment, but rather that the knowledge held by people with an impairment, or their important carers such as family needs to be valued and respected (Shakespeare, 2006; Simpson et al., 2005; Sullivan & Munford, 2005). Joyce told of the specificity of the professional knowledge she needed in her life: “there is no denying that doctors have their specialty, and so do therapists. That is a kind of specialized field we cannot cross into”. The importance of having an integrated and harmonious relationship between the two sides is that service users and professionals should collaborate for consensus and effective outcomes. Joyce said: “not to take a higher position with us, and we have to follow what you say. But we discuss together which method is better for us, and is more acceptable as well as could be more easily successful!” Thus, professionals should be willing to open up the opportunity for both parties to share their expertise, and to gain mutual respect and trust in the process of building alliances with their service users (Simpson et al., 2005).
Second, the forms of relationships between professionals and people with an impairment should break down the bureaucratic stereotypes (McLean, 2005). Sullivan (2005) suggests that “building alliances is about being friends, colleagues, workers, volunteers and members; not about being clients, trainees or programme
270 participants” (p. 163). However, Sullivan and Munford (2005) point out the difficulty of building such a relationship in a real word. They state “professionals are not all-powerful within the system: they are creatures of policy and, as such, often have their hands tied in terms of the resources they have at their disposal” (p. 30). Sometimes, professionals need to make a difficult decision between the resources they have and the service users’ expectations. Thus, Sullivan and Munford argue for a fundamental change in mindset. That means “shifting from the demeaning professional-client, helper-helped, provider-recipient relationships to one of genuine (my emphasis) partnership with disabled people” (p. 30). Then, the re-distribution of power can be more readily and equally located in these two groups, and professionals’ prejudice against people with an impairment can be more easily minimized (Morris, 2006; Sullivan, 2005).
Third, being willing to listen to, and carefully listen to what people with an impairment say is a way forward to recognize their voice and to be empathetic towards the difficulties that such people with an impairment encounter in their lives (Simpson et al., 2005). Keith says (1996) “trying to understand the complicated feelings which arise out of our everyday encounters with the world is central to the lives of all disabled people” (p. 70). This needs professionals to have genuine commitment to work with people with an impairment (Shakespeare, 2006). Pearl criticized her experiences of contacting professionals; she found they did not pay attention to what she said. She was very disappointed at this: “The social workers come to our houses to visit and to take care of us… But we do not necessarily need this very much. What do we want? I have told you we need people who listen to us!” Professionals as allies with impaired people should be developed on the ground of what Traustadottir calls “commitment and involvement” (cited in Shakespeare, 2006, p. 180) to enhance support such as inclusion and friendship.
Finally, Simpson et al. (2005) suggest that the awareness of building such a collaborative relationship for professionals should be “included in the initial training of professionals” and “be reviewed in their ongoing professional development” (p. 203). Providing service users’ experiences in the training courses and service users’ supervision in professionals’ later ongoing work with people with an impairment can be helpful to ensure the allied relationships (Simpson et al., 2005).
These suggested methods can help professionals to accommodate services users’ values and beliefs when building the partnership so that they are able to become allied to the community but not to medicine (Ballantyne & Muir, 2008; Finkelstein, 2007). This means professionals need to acknowledge “positive elements of their
271 experience of impairment and disability and locating them within a social context” (Ballantyne & Muir, 2008, p. 146). To conclude, Finkelstein (2002) suggests that a community-based profession “will provide an opening for disabled people and disenchanted professionals (especially OTs) to truly work together in creating a more appropriate nationalised service which allies itself with the community and responds to what people want” (p. 16). This study has enabled me to recognize the need to build better working relationships in the service and research field of disability (Simpson et al., 2005). However, in considering such relationships, “the social, economic, ethical and professional pressures that drive this research agenda” cannot be overlooked (Rioux, 1997, p. 107). Although building alliances with people with an impairment might be a difficult challenge, it is helpful in correcting the power imbalance between this group of people and society; thus, the place of judgement can be re-constructed to benefit people with an impairment (Rioux, 1997).
Summary
This section has concerned my reflection on my growing understanding of disability. I recognize people with an impairment as having the expertise in understanding their lives with the impairment, and their ability in making decision for their lives. Along with these two points, I see the importance of building alliances with impaired people to create empowering perspectives for both sides. This would challenge many professionals’ views on their expertise and how they provide services to people with an impairment. I have addressed four essential issues for professionals to enable the construction of a collaborative partnership with their service users. They are:
-- recognizing people with an impairment as having the expertise of their impairment and experiences of disablism -- building genuine relationships -- listening to impaired people’s voices -- including collaborative awareness in early training and later professional development
The next chapter discusses how the conceptual framework adopted in the study could assist me to draw out participants’ lived experiences and perspectives of living their lives with the impairment. Also, addressed are the findings about the lived experiences and perspectives of these participants.
272 CHAPTER 10 LIVED EXPERIENCES van Manen (1997) says “lived experience is the breathing of the meaning” (p. 36). To explore and understand the lived experiences of people with an impairment has a significance equal to the construction of the meaning of disability. How the conceptual framework in the study is useful for exploring and understanding the lived experiences of participants with a physical impairment, and its implications for other research, are addressed in section 10.1; and the participants’ lived experiences are addressed in section 10.2.
10.1 Application of the conceptual framework for studying lived experiences
“It is more than just the impairment” was developed in the study, and is grounded in participants’ lived experiences of living a life with a physical impairment. How can their lived experiences of disability be elicited and then captured? Heideggerian interpretive phenomenology could be sensitive to it. van Manen (1997) explains:
phenomenology because it is the descriptive study of lived experience (phenomena) in the attempt to enrich lived experience by mining its meaning; hermeneutics because it is the interpretive study of the expressions and objectifications (texts) of lived experience in the attempt to determine the meaning embodied in them. (p. 38)
Hence, using the Heideggerian interpretive phenomenology as the theoretical perspective was well suited to exploring and understanding participants’ lived experiences of living a life with a physical impairment (refer to Table 2 and Chapter 3 for the developed conceptual framework).
A deeper discussion of how to use hermeneutic phenomenology to explore participants’ lived experience of living with a physical impairment in the study follows to provide an understanding of its implications in other research areas.
First, the Heideggerian view of the person was extremely useful to help understand participants and their being-in-the-world. Heidegger’s fascination with understanding Being reveals that one’s existence does not exist alone but is influenced by others. He portrays the existence with others as Being-with and Dasien-with (Sarvimaki, 2006). Larkin et al. (2006) call Heidegger’s view of the
273 person “person-in-context” (p. 106). Therefore, to understand participants’ lived experience also involves understanding their being-in-the-world, and their being-in-the-world was affected and shaped by the Taiwanese context, including the influences of culturally and socially constructed meanings related to disability in their everyday life (Larkin et al., 2006; Leonard, 1994; Orbanic, 1999). Hence, applying Heideggerian interpretive phenomenology to understand their perspectives and experiences of living a life with a physical impairment in the context in which they were living their lives was quite useful.
Second, Heidegger’s view of the person allowed me to understand that it was unavoidable that I would bring my preconceptions to the interview and analysis process. It was also predictable that my understanding of disability might be influenced and challenged by participants’ words (Larkin et al., 2006). The Heidegerrian view of Being provided a space for me to face my preconceptions of disability and encouraged me to make the change I wanted. Therefore, in the study, Heidegger’s view of the person led me to scrutinize myself in my understanding of disability and then made me realize the importance of building alliances with people with an impairment. Thus, I could build good relationships with study participants in a relatively short time and was able to elicit and listen to their voices. Therefore, the Heidegerrian view of Being and Being-in-the-world with others aided me to become opened to others, find commonalities amongst our understandings and for me to grasp new understandings about the experiences of others. As such, Heideggerian interpretive phenomenology may also be useful in other research to efficiently guide researchers to build partnerships with their study participants in research initiatives.
When researchers have learned the lived experience from their participants, what do they do with the information they have? To manage this information I found it useful to be guided by constructivist grounded theory. This approach is consistent with Heideggerian interpretive phenomenology where the researcher is about to engage in conversations and find subjective meanings within daily living. Through in-depth talking, richness in detail was achieved which helped me to embrace new ways of understanding disability. Along with applying constructivist grounded theory as a tool for building knowledge from my understanding and interpreting participants’ lived experiences of living their lives with a physical impairment in Taiwan, themes could thus emerge (Charmaz, 2006; Creswell, 2007). “It is more than just the impairment” was therefore built. This grounded theory conceptualizes the understanding of disability in such a way as to embody how participants live a life with a physical impairment in the community in Taiwan. It
274 enriches the understanding of disability which would reverse many non-disabled people’s or even impaired individuals’ preconceptions about it. It can be seen as an illustration of how to understand disability in a more holistic way, and has implications for service or policy provision in Taiwan (see chapter 11 for more details of discussion of the developed theory).
Summary
The conceptual framework (see Table 2) allowed me to see and embody the lived experiences of participants’ being-in-the-world, not just the biological impairment itself. It let me see participants’ micro world, such as their everyday life with family and friends in their social networks, and their macro world: their wider interactions with Taiwanese society. Then the complexity and richness of their whole life was revealed and depicted via how the physical impairment influenced and reached every aspect of their everyday life.
Using such a conceptual framework is feasible and sensitive to developing a cultural dimension of disability theory because it builds a theory grounded on these lived experiences of living a life with a physical impairment in Taiwan. The conceptual framework developed in the study can be applied to studying lived experiences in other research areas.
275 10.2 Lived experiences of struggling to have their voices heard
People with an impairment have little opportunity to tell society their experiences of living a life with an impairment because society tends to judge them on their “capacities and personalities” (Morris, 2006, p. 287). Their voice (the subjective reality of their everyday living) has been ignored for a long time (Crow, 1996; Morris, 2006). This situation also happens in Taiwan. A search of the related local and international literature for a representation of the voice of Taiwanese with a physical impairment shows that statistical studies outweigh studies of lived experiences. Although some papers demonstrate a qualitative orientation for Taiwanese with impairment, they do not reach as deeply as possible into understanding their everyday lives.
In this study, I saw participants as having the expertise in understanding living their lives with a physical impairment. Using the developed conceptual framework allowed participants’ voices to speak, and I and other people have the opportunity to learn from them. This also contributes to what Knox and Hickson (2001) say has “added to the small but increasing band of studies premised on the unsilencing of silenced voices” (p. 286).
So, what were participants’ voices? When listening to their lived experience of living a life with a physical impairment, what message did they convey? These participants all lived in the community, but many had limited interactions and few contacts with non-disabled people outside their family. Also, several participants felt uncomfortable, uncertain and less well supported in their living situations in the community. Additionally, some participants used specific strategies to foster support from the community because of their impairment. These participants might be present in the community, but their ordinary everyday life highlighted their continued social exclusion in substantial ways (Bigby & Frawley, 2010).
Participants’ personal feelings and thoughts of having an impairment reflected to what extent they felt accepted by the community; their lived experiences of the social network, disability legislation and disablism in Taiwanese culture showed how they experienced exclusion in the community. Each of these is now discussed in order to explain how the issue of inclusion was a significant concern for these participants, and to present the implications of research, service or policy provision.
276 10.2.1 The state of mind reflects the degree of inclusion
The lived experiences of how participants dealt with their minds captured my attention because the interactions between their impaired body and mind are so subtle and unconscious – an issue which has been neglected by many professionals, including me, for a long time.
The concept of ‘dealing with the mind’ equals what Carol Thomas (1999, 2002, 2004b) refers to as the aspect of ‘psycho-emotional dimensions of disability’ in her social relational interpretation of disability. How having an impairment might influence an individual’s feelings and thoughts – his or her psycho-emotional well-being – is crucial to participants’ life. In the developed theory “it is more than just the impairment”, participants identified this as “fragile mind”, “non-fragile mind” and “strong mind”, as an important aspect of their perceptions of living their lives with the impairment because having a physical impairment brought about multiple and deep influences on their lives (refer to 5.1.1.2 dealing with the mind).
Reeve (2002) finds “there are various manifestations of the psycho-emotional dimensions of disability” (p. 495). For participants, having an impaired body would influence their feelings and thoughts (psycho-emotional well-being) in three ways in interacting with the community. The fortress ladies developed a fragile mind because their perceptions and experiences of living with the impairment brought about negative impacts on their psycho-emotional well-being. Reeve calls this type of reaction “internalized oppression”, which is a form of “emotional disablism” for “any marginalized group within society” (p. 495). For example, Pearl expressed anger when she encountered physical barriers in her ordinary community setting. She said: “I want to go to a bookshop but I have never been to a bookshop, never! People like you sometimes go to a movie, but for me, it’s impossible!” Joyce felt ashamed about others’ social reactions towards her impairment, such as being stared at by children. She said: “I don’t like the way children look at me!” Turning to social networkers, their psycho-emotional well-being was not disturbed by the impairment because of some positive ideas and experiences which the community brought into their lives. Furthermore, the mind man used his own spiritual beliefs to empower his psycho-emotional well-being. Thus, having an impairment was not always the dominant factor nor the only identity in their lives (Shakespeare, 2006). Reeve (2002) states “not all disabled people experience the same degree of psycho-emotional disablism” (p. 505), which reflects how participants perceived their psycho-emotional well-being. Importantly, participants explained the linkage
277 and process of how their impaired bodies influenced the psycho-emotional well-being of their community life.
Most people with an impairment have common experiences of encountering discrimination, stigma, and prejudice in their ordinary everyday life; thus, it is easy to undermine their self-esteem, resulting in a sense of alienation (Cummins & Lau, 2003). Many of them live in the community, but with a lack of community connectedness and belonging, which can make them feel excluded and lonely in social relationships (Clegg, 2009; Cummins & Lau, 2003). Perceiving disability as either seeing the impairment itself or barriers constructed by society is just seeing the results of living with an impairment. ‘Dealing with the mind’ is the embodiment of the subtle interactions between an impaired individual and his or her living context. It challenges the notion that the social model of disability tends to ignore the importance of impairment, and the medical model of disability, which mainly focuses on it (Hughes & Paterson, 1997; Paterson & Hughes, 1999, 2000; Watermeyer & Swartz, 2008). In disability research, it is suggested that an understanding of disability should allow one to see the implications of impairment in a specific context, “in which the carnal, the emotional, the cognitive and the cultural are indistinguishable” (Hughes & Paterson, 1997, p. 336). In policy provision, ignoring the psycho-emotional aspects of disability marginalizes the subjective lives of people with an impairment. Thus, it is likely to delegitimate and obscure their lived experience which may lead to their being excluded by society (Watermeyer & Swartz, 2008).
In service provision, for many people with an impairment, the most frequent and often enduring social contacts they have are with service providers (Marquis & Jackson, 2000). However, many service providers provide task-orientated assistance to their service users and often neglect to provide “active social engagement” (Cummins & Lau, 2003). Marquis and Jackson (2000) explain the phenomenon in this way: “service workers may not be aware of the felt attachments of people living in service because their own lives are relationally enriched” (p. 411). The way in which impairment influences the psycho-emotional well-being of service users may prompt service providers to provide not only practical assistance but also emotional support and commitment; thus, the relationship can be built on “reliability” and “validation” and becomes less disempowering to service users (Cummins & Lau, 2003; Marquis & Jackson, 2000; Simpson et al., 2005). Furthermore, when service providers start to understand how service users perceive the well-being of their mind, the former should be able to read the implicit signals that service users shed light on. For example, do service users complain that
278 they feel lonely because of being excluded from the primary community such as family, workplace or disability organizations? Or do they feel supported by the general community? (Cummins & Lau, 2003) Thus, it can help service providers to continually reflect on how a quality service can maintain or improve the way they meet the needs of service users, for example by facilitating their sense of inclusion in the community. In other words, understanding how people with an impairment deal with their mind – seeing the relationship between having an impairment and the state of a person’s psycho-emotional well-being – is rightly important in enhancing their “sense of community” (Cummins & Lau, 2003).
10.2.2 Wanting to be included in the community
10.2.2.1 Social network
Many studies have pointed out the importance of social relationships with regard to one’s well-being and quality of life (Bigby & Fyffe, 2009; Chadsey & Beyer, 2001; Clegg, 2009; Knox & Hickson, 2001; Lippold & Burns, 2009; Morris, 1991a; Reinders, 2002; Shakespeare, 2006; Taub et al., 2009). Events in their social networks formed parts of participants’ everyday life and constituted their micro social world. Social relationships were the most frequently mentioned topic raised by participants in the in-depth interviews. Participants naturally talked about the relationships with people close to them, and what their interactions with these people were. This coincides with Clegg’s research (2008) which found that young people with an intellectual disability and their carers/ parents care about whether these people can build relationships in the community, which promotes their sense of belonging most. Knox, Mok and Parmenter (2000) find “people attach individual or idiosyncratic meanings to the relationships in their lives and act according to these meanings” (p. 50). ‘The micro world’ was crucial and meaningful to participants because people around them were tightly connected to their daily life in the community and it was their first point of connection with society.
Participants addressed many issues in their everyday lives in the interviews and these formed the most difficult part to analyze and categorize because of the complexity and types of social relationships. In this section, three types of social relationships participants engaged in are discussed to illustrate the issue of inclusion. They are family relationships, friendships, and intimate relationships. After detailing each of them, the implications for inclusion in research, service and policy provision are discussed.
279 Family relationships
Family played a key role for most participants in supporting their lives with the impairment. Most of their families accepted and were willing to provide support to their family members with an impairment because of the strong family bond. Sustained family support was the most significant support in many participants’ lives. A lack of family support could be a disaster for some participants. For example, Mary was encountering losing significant family support because of the death of her husband and the growing up of her children. In addition, her aging was making her body weaker. Hence, she was terrified about lacking family support. She said: “If no one is here, what should I do!? [Mary’s emphasis, sounding anxious]” Although participants wanted to have sustained family support, two negative issues were generated. The first one was becoming a burden to family. For example, Hilda very poignantly pointed out this situation with her daughters: “Now…they are encumbered with assisting at my expense. They also need to eat and to raise their children”. The second issue was worry about losing current support. Yugo and Joyce relied heavily on their parents’ support. However, they understood that the support would be gone after their parents died. Joyce said: “it is impossible to depend on them [her parents] for my whole life”. Hence, planning for the future was a concern for them. For example, Yugo said: “I think when I am old, no one will take care of me, and I might need money!”
For most participants, family support was the most important in their lives. The availability and sustainability of family support was a major concern for them to live their lives in the community. This research finding implied that participants did not feel a sense of belonging with other community members because they could not get ongoing and sustainable support from them. Hence, without family support, these participants would feel terrified about their lives in the community.
Friendships
In addition to family relationships, participants shared many of their experiences and perspectives of friendships. Reinders (2002) explained this:
If community living is a human experience, we should expect that people with disabilities want to be included in the lives of others as John, Jack or Jody, i.e. we should expect them to want us not only as bearers or institutional roles, but as friends and companions who have chosen them to be part of their lives. (p. 3)
280 Participants described two types of perceptions of their friendships. One was positive in that they felt happy and could get support from their friends. For example, Yugo said: “I enjoy very happy and lively interactions with them!”, and Judy said: “They [non-disabled friends] serve us [the handicapped] assiduously for going out!” In contrast with the positive perceptions of friendships, some participants told how they felt lonely because they lacked friends. For example, Pearl talked about her experience of friendships as a lack of connectedness. She said: “In my heart, I feel friends are far away from me and I don’t have friends”. Likewise, Joyce admitted she had difficulties in making friends. She said: “Frankly speaking, friendships for me have not been going smoothly!”
For those participants who had good friendships, they built such relationships on the qualities of reciprocity and companionship, so they could receive emotional and physical support from their friends (Chadsey & Beyer, 2001; Johnson, Douglas, Bigby, & Iacono, 2009; Shakespeare, 2006). For example, Yugo depicted the reciprocity as: “they help running errands for me and lifting me in and out of the car. And I help them with their assignments. Sometimes I also have to play a role as a psychological counselor to resolve their emotional problems”. For those who did not have or could not maintain positive experiences in friendships, this was either because of the external barriers such as stigmatization or the internal barriers such as having a fragile mind or the limitation of impairment (Atkin & Hussain, 2003; Taub et al., 2009). Shakespeare (2006) calls the internal barriers “the predicament of impairment” (p. 63) and Thomas (1999) names it “impairment effects” (p. 43), which explains the effect of impairment on both physical and psychological well-being.
For the external barriers from the community, Pearl told of how she got hurt in making online friends because of stigmatization. She said: “still some people on the Internet know I am disabled and then they don’t send anymore messages. They said you are a cripple! It makes me feel very hurt and very sad!” Venice mentioned how he was discriminated against by people with an impairment in a disability organization. He remembered: “Many handicapped people didn’t think they were handicapped! ... So he [a member] looked down upon us we who were handicapped from birth, he thought we were handicapped people, but he wasn’t”.
In terms of internal barriers, the fortress ladies talked about how their fragile mind influenced their developing social networks. For example, Joyce found she was wary of getting hurt in contacting people so that she could not open her mind to accept others. She recalled how she isolated herself during her high school days: “At that
281 time I didn’t have enough courage to have a go at doing other things. So, when I finished class, I just stayed in the classroom and after school, I just went home and didn’t go anywhere”. Hilda described the internal barriers in developing her social network as the physical difficulties brought about by the impairment. She said: “I worked hard before. I didn’t select jobs and I just did it. But now I can’t move and just open my eyes and watch TV all the time!”
From the above, some participants showed they made efforts to manage their friendship, and others showed they encountered many difficulties in developing their friendships. Wanting to be included and not being included were seen in these participants’ lives. Shakespeare (2006) says it is not hard to see that people with an impairment are usually less likely to be well integrated into networks and friendship circles; thus, they tend to “experience significantly greater isolation and loneliness” (p. 170). Pearl explained how she did not feel included in friendships, and this resulted in a lonely social life for her. She said:
“Friends would leave and walk. They can move around. When I need to talk to them, I don’t know where they are. Because when they are in a mood, they might ride a scooter to find their friends! …They might go outside with people to have a spree such as at Christmas or Christmas Eve. It seems I am very lonely, lonelier than ordinary people!”
Intimate relationships
In addition to the common experience of being excluded from friendships for impaired people, Shakespeare (2006) further argues “even where disabled people have friends and companions, they may find it harder to experience everyday intimacies which non-disabled people take for granted” (p. 173). This did happen to most of the participants because they experienced different degrees of difficulties in building intimate relationships. For example, Joyce expressed how she really wanted to have a romantic relationship. However, she believed its development would be hampered by her impairment. She explained: “if my foot were not like this today, …, perhaps I would have a boyfriend waiting for me already. Perhaps I would have already walked in to the church to get married”. Likewise, Yugo agreed about the negative impacts of impairment on building a romantic relationship. He illustrated: “Being a person with a disability, I’ve found there are difficulties in having a romantic relationship”. As for further development of a romantic relationship to marriage, it seemed most participants did not hold positive perspectives on it with non-disabled people. For example, Venice did not believe a
282 marriage could be maintained with a non-disabled person. He found: “a handicapped person marrying a non-handicapped individual divorces easily!”
In other words, these participants saw greater difficulties in developing an intimate relationship because non-disabled people thought them as being a burden and being asexual (Hughes, 2002; Meekosha, 2004; Shakespeare, 2006; Taub et al., 2009). Mary said, “People like us seem a burden to others, so who would want us?!” Venice recalled how a non-disabled person questioned his sexual ability. He recounted: “he asked me: if you went to…a red-light district, how would you do it?!...So the handicapped like us also give people a feeling: you are all out of order!” Shakespeare (2006) explains such a situation in this way: “because a relationship with a disabled person may be perceived as asymmetrical, it may be assumed that the non-disabled person will not derive any personal benefit from the relationship” (p. 178). Hence, to have an intimate relationship was not as easy as for non-disabled people, and maybe the most difficult of the relationships to develop for many people with an impairment. Joyce described the difficulty as a thorny path. She concluded sadly: “I think it is a thorny path!”
Implications
From the above, participants expressed how having an impairment influenced significantly the development of important social relationships. For example, Pearl did not have access to friendship; and Joyce did not have access to intimate relationships. Thus, they experienced great isolation, loneliness, and lack of support from the community where they lived. Also, all participants had to consider the possibility of maintaining sustainable social relationships because of their impairment. Hence, they made a decision either to foster or to give up these relationships. Reinders (2002) argues that the meaning of community is the experience of sharing one’s life with people rather than just a location, and there is a need for a good life for every human being. In the study, participants showed this desire to be included in the community; however, they had difficulties in interacting with people because of how the community reacted towards their impairment.
Building and sustaining social relationships are fundamental principles of inclusion (Bigby & Frawley, 2010; Chenoweth & Stehlik, 2004; Clegg et al., 2008; Reinders, 2002). However, in disability research, there was minimal discussion of friendship, sexuality, or loneliness for physically impaired people. Much of the research which has dealt with these issues relates to people with intellectual disabilities (Shakespeare, 2006). Hence, research regarding how to improve social inclusion of
283 people with an impairment in respect to social networks should be further investigated (Shakespeare, 2006). For example, the lived experiences of how physically impaired people live their everyday lives in the community can help to provide insight into factors that contribute to their exclusion and how to enhance their sense of belonging in the community (Abbott & Mcconkey, 2006). For example, Joyce worked in a disability organization which held a film exhibition about disabled people with different topics every year. She found this was a good opportunity to educate non-disabled people to have a better understanding of them. She said: “I think this [a film exhibition about disabled people] should be watched by ordinary people …as an educational opportunity.” Thus, education about impairment and disability through people with an impairment and their families may challenge the misunderstanding of disability and improve the acceptance of disability in society (Shakespeare, 2006; Simpson et al., 2005).
In service provision, Marquis and Jackson (2000) remind us of the importance of good service relationships for providing a quality service, and thus enhancing the service users’ life quality. They say “the importance of staff attitudes and the holistic nature of the environment, rather than staff training or competence per se is a key factor in facilitating social interaction and relationships opportunities” (p. 413). However, disability services may not always be aware of “ethical serving”, and many service workers focus on providing “technical services” (Marquis & Jackson, 2000, p. 418). Thus, service users might feel detachment when accessing services. Knox and Hickson (2001) argue “the presence of meaningful friendships” is critical for one’s well-being (p. 276). The issue of ethical serving like facilitating friendship opportunities should also be included in the content of services, and then the positive ethical-based relationship built from service providers such as professionals, personal assistants and carers can let service users feel attachments, and enhance their sense of worth and confidence leading into other relationships (Cummins & Lau, 2003; Marquis & Jackson, 2000; Shakespeare, 2006; Simpson et al., 2005).
In addition to service relationships, how to promote other meaningful relationships and how to sustain them for service users should be included in disability services to enhance service users’ sense of being part of the community. In Knox and Hickson’s (2001) study exploring the meaning of close friendships for people with an intellectual disability, they suggested:
It is important to a person’s life satisfaction that such longstanding friendships are not lost, diminished or discouraged in the strivings to establish connections, including friendship, with other community
284 members. The role of support workers in actively encouraging and assisting this to happen is critical. (p. 287)
It should be recommended that for those social relationships important to people with an impairment, that service providers seek ways of sustaining current or developing new relationships so as to meet service users’ needs such as supporting opportunities for encouraging social interaction. Shakespeare (2006) finds that supportive service providers are “proactive and imaginative” and can “stimulate ideas, facilitate opportunities, and act as an entrepreneur, creating connections based on shared interests” (p. 181). For example, in Wilson and Jenkin’s (2009) study, they discuss what key factors lead to the success of inclusion work of people with an intellectual disability in Australia. In one of their case studies, a creative support worker tried to link the local fishing club with people with an intellectual disability who were interested in learning fishing, and thus successfully promoted ongoing interactions between these two groups of people. In such a case, the inclusion work is provided on the premise of creating opportunities in the community from a support worker with the ‘proactive and imaginative’ idea.
Finally, policy provision such as disability policy and disability movement, should also include social networks as an important indicator for developing an inclusive society for people with an impairment, and treat it as a necessary welfare schema (Clegg et al., 2008; Shakespeare, 1996, 2006). Clegg (2009) argues that because people are all living in relationships, “relationships should become the building-block” (p. 12) for a moment of change to demanding an inclusive society. Being included in relationships allows people to flourish as human beings and makes life worth living (Reinders, 2002). However, according to Article 11 of the Protection Act, ‘social network’ is not on the agenda. It states:
The governments hierarchy of individual levels shall periodically investigate the needs of living, health care, special education, employment and occupational training, transportation and welfare of the disabled at least once every five years, and publish the statistic reports of the surveys (Laws and Regulations Database of the Republic of China, 2007).
The official report is based on statistics. For example, the latest investigation results for the living needs for people with an impairment (Department of Statistics Ministry of the Interior, 2006) does not address family interactions but shows things such as what percentage of people with an impairment find their income does not cover their living expenses, and who they live with. Also, it does not report the views of people
285 with an impairment on their intimate relationships, but simply lists their marital status. Furthermore, it does not address any aspect of their friendships. This does not reflect what matters for participants, and thus the statistical reports might just satisfy the superficial concerns of bureaucrats and professionals. For example, Pearl told of how disability legislation could not meet her needs: “that [disability legislation] is made for others, for you serving disabled people!...So I told you it is rubbish!” In Shakespeare’s study (1996), a similar situation he found is that the disability policy did not address the sexual needs of people with an impairment. He said:
Policy and provision around disability often neglects to consider sexuality as one of the basic human needs. While housing, transport, education and other needs are dealt with, albeit inadequately, consideration of social and sexual factors is not high on the welfare agenda. (pp. 199-200)
Likewise, in Clegg’s study (2008), her findings suggest that current inclusion policy in the UK creates tension for people with severe intellectual disability and their supporters because it does not address social relationships or promote their sense of belonging, which they see as a primary need in their lives. These studies confirm the findings of this study, and it is argued that disability politics in Taiwan should also focus on the issue of social networks to build an inclusive society which brings a sense of belonging to its community members such as participants who longed for it.
10.2.2.2 Disability legislation
Participants showed they wanted to be included in the community. So, what did the government do about this? Did disability legislation help the inclusion of impaired people in Taiwan? When I tried to seek the answer from participants and asked them their views on the meaning of disability legislation in their lives, their facial expressions were either puzzled about why this was being asked, or unhappy with this question in the beginning. For example, Pearl reacted: “I think it is rubbish!” Did this mean disability legislation did not contribute something good for them? Their lived experiences of the legislation might illustrate this and give implications for disability policy provision.
Economic insecurity
Most participants did not see their economy secured by the legislation; hence, they suffered more economic insecurity than did non-disabled people. A report of the
286 situation of the disabled in 2008 shows the rate of living expenses beyond the income has increased year by year, and reached 51% in 2006 (The Welfare Organizations for the Disabled, 2009). Participants pointed out that the legislation did not provide adequate work support and living support to allow for this.
First, participants perceived and experienced their employment rights as not being guaranteed by the legislation. Joyce concluded: “I don’t think I have a guarantee of employment”. Participants identified few employment opportunities. Actually, the unemployment rate in 2006 for people with an impairment over 15 years old (15.87%) was four times higher than for the same age group of non-disabled people (3.9%) (The Welfare Organizations for the Disabled, 2009). Yugo believed the main reason for this was that: “a boss might not care about this Act and he won’t care if he is fined!” Many employers in Taiwan would rather pay the penalties than hire an individual with an impairment. According to the report from the Council of Labor Affairs in 2009, the head of scientific and technological companies in Taiwan, which can provide around 3100 work opportunities for people with an impairment, do not do so; in addition, ironically, eight of ten government departments which did not follow the quota to hire impaired people are judiciary and control sections which stand for civic rights and social justice in Taiwan (Wang, 2010b).
Furthermore, several participants asserted that they experienced significant inequality at work. For example, Mary did not get equal payment for her work. She said: “I am low-cost labor!” According to the Welfare Organizations’ survey, 54.17% employed people with an impairment are paid under the basic wage (Wang, 2010b). Even worse, for those with an impairment over 15 years old who want a job, 26.93% wait for more than seven years before securing employment (The Welfare Organizations for the Disabled, 2009). Hence, because it was too hard for people with an impairment to get a job, employed participants did not resign readily. Mary concluded she had no choice but to accept the unequal treatment at work: “People have already given you the opportunity, what more do you want [her emphasis]!”
Second, in Taiwan, around 35% of impaired people rely on subsidies as their main family income, and so did some participants. However, Hilda found the financial support was far below what she needed. This was because the subsidies were not enough for her living expenses and her heavy expenditure on medical treatment. She told of this sadly: “We get subsidies of 10,000 dollars in total! To pay bills, meals, gas and so on uses it up. And we need to see a doctor. That costs a lot! ... The Department of Social Welfare doesn’t know our situation!”
287 Uncertain support
The second reason why participants did not perceive the usefulness of disability legislation in their lives was that it provided limited support. First, although some participants like Yugo and Mary found that accessibility was improved in some aspects of their lives, all participants still encountered varying degrees of difficulty in their everyday life. Lack of accessible transportation for both short-term and long-term trips is quite common and this makes people with an impairment encounter great difficulties in independent living and mobility (Wang, 2010c). For example, Pearl said that inaccessibility hindered her work. She spoke of her experiences agitatedly:
Some people [with an impairment, including her] can’t even get to the sidewalk so how can they get in the front door? Right, if they get in the front door, how do they access their computers?…If they can have access to a desk, won’t they need to consider whether they can go to the toilet? So after going through layers of stuff, how do they feel?
Second, some participants argued that the resource distribution was not fair. For example, Yugo pointed out that only in the big city might public transportation be more accessible for people with an impairment. He said: “I envy those disabled friends living in Taipei! When they go out, they can take the Metro and a bus! But we have none here!” Indeed, in Taiwan, urban areas have more accessible transportation than rural ones (Wang, 2010a).
Third, most participants were not very aware of what support the legislation could provide to them. In the interviews, some participants even asked me if there were any resources available they could apply for. Actually, Joyce said that before she had a job in a disability organization, she and her family were not aware of the available resources or always found out about support for people with an impairment quite late. She explained: “We don’t know we have such benefits available, or when we do find out, it was introduced a long time ago!”
Finally, several participants pointed out that one of the reasons they received limited support was bureaucracy. For example, Venice was not satisfied with the regulations for running a disability organization in which only impaired members were eligible for a position as organizer. The purpose of such a policy change was that the government thought it would allow people with an impairment to have greater control over disability issues. However, after the new policies were made, he
288 found people with an impairment lost non-disabled people’s support. He argued: “when we needed to do things, these organizers were all handicapped, what could we do?”
Implications
In the above, participants described the economic insecurity and their feeling less supported by disability legislation. Participants still thought they were excluded from economic and social participation in this civil society. Therefore, they felt the disability legislation was useless because it did not enhance their inclusion in Taiwan. In effect, the extent to which the disability legislation has been implemented has been questioned by some Taiwanese academic and groups for people with an impairment (The Welfare Organizations for the Disabled, 2009; Wang, 2008). For example, the secretary director of the League of Welfare Organizations for the Disabled describes disability legislation as a sand castle because of its fragility. She argues:
Two years after the new Protection Act was released, society and the government still discriminate against people with an impairment using the excuse of protection. The legislation is like a sand castle. Although it has a good shape, it cannot withstand any surf (Wang, 2010c).
Following the historical development of disability legislation, the regulations have been expanded and become more and more detailed (see 2.3 Disability legislation in Taiwan). Some participants also responded to some aspects of the improvement of disability legislation in their lives. For example, Mary found disability legislation was better than before because she received more benefits. It seems the government has become more satisfied with the improvement of disability legislation. The official White Book (2009) announced the disability legislation has followed international trends because it has adopted ICF for how to categorise people with an impairment in Taiwan. Also, because the UN Convention on the Rights of Persons with disabilities (CRPD) was promulgated in 2007, the same year as a significant amendment of Taiwanese disability legislation, the White Book shows the government’s expectation to keep up with the UN’s steps towards social welfare for people with an impairment. It seems the government wants to do more and better things for the rights of people with an impairment in Taiwan, and is proud of its achievement (Ministry of the Interior, 2009c).
289 However, the disability legislation is named the “Protection” Act, which implies social values towards impaired people perceived them as a vulnerable group and thus needing the government’s protection and special treatment (Wang, 2002). In effect, participants saw themselves as holding a disadvantaged position in society because neither society nor the legislation was supportive of them. Some participants wanted to have more support from the legislation and others were disappointed about it. For example, Joyce described her feelings about disability legislation:
Because I feel no matter how well I know the disability legislation, it is no use. I won’t use it in this small place. I can’t get what I want, so I don’t have to know too much. If I know too much, I would feel more depressed because I would think why we don’t have these things in our county.
The spirit of CRPD is to see people with an impairment as having the same human rights as those without impairments and it aims to transit the disability policy paradigm from exclusion to inclusion (Melish, 2007; Wang, 2008). CRPD argues that people with an impairment should be valued and respected (Kim, 2010) and the CRPD is a “toward a ‘social’ or ‘human rights’ model that focuses on capability and takes inclusion, individual dignity, personal autonomy and social solidarity as the principle points of departure” (Melish, 2007, p. 8). However, Wang (2008) finds the spirit of disability legislation is far from CRPD. She argues that rights for people with an impairment in Taiwan refer to how they get subsidies, services or payments. Hence, the relevant private groups and many impaired citizens aim for this. This fact illustrates that what the government does is to provide this group of people relevant support on an individual basis, but it does not make society accessible to all citizens (Melish, 2007). This type of disability legislation makes people with an impairment depend on social welfare and diminishes their control over their own lives (Abberley, 1995; Hughes, 2002). This is a form of discrimination embedded in and permeating these people’s everyday life (Oliver, 2009).
This is different from the spirit of CRPD which sees the rights for people with an impairment as an ethical and moral issue (Wang, 2008). Although Taiwan is not a member of the UN, it should also have the determination to ensure human rights of people with an impairment. Significantly, the government should change its mindset to see the rights of people with an impairment as society’s responsibility and obligation (Wang, 2008). Manderson (2004) concludes the importance of commitment in disability policy for enhancing social participation for people with an impairment as the following:
290 Changes in housing and urban planning, transportation, communication, assistive and general technology, even education and employment policies or programs, will not automatically change social attitudes, ensure inclusion or provide the intellectual and moral commitment to continue to test the environment to minimize disadvantages and prevent social exclusion, marginalization and stigma. (p. 31)
On the other hand, Kim (2010) emphasizes that “without effective and organized political representation of people with disability, such important policies may remain as merely “intended” policies, or lack legal binding even if adopted” (p. 110). Thus, the groups for people with an impairment in Taiwan such as ‘the League of Welfare Organizations for the Disabled’ which has played a key role in the Disability Rights Movement and has been the representative of Taiwanese with an impairment in the amendments of disability legislation, should keep supervising how human rights of people with an impairment have been implemented and help to identify substantive concerns (Melish, 2007; The Welfare Organizations for the Disabled, 2009). French and Swain state (2006) “the social and historical context of the politics of hope is grounded in the experiences of people with an impairment” (p. 383). Thus, ensuring the voice of people with an impairment is heard via political participation or related research can become the basis for improving their human rights and inclusion.
10.2.2.3 Disablism in Taiwanese culture
From the two previous sections, we can see disablism present in participants’ everyday life. It influenced other people’s views on them, so they encountered different degrees of difficulty in their social relationships, and even, in employment. The disability legislation in Taiwan could not effectively eradicate disablism. From the findings, participants identified they perceived themselves as somehow being rejected by Taiwanese culture because disablism was evident through abusive language, a punishment as the results of karma and reincarnation, as well as depicting them as being inferior to non-disabled counterparts. Barnes and Mercer (2003) explain that “‘able-bodied normalcy’ is embedded in everyday thinking and behaviour as a privileged or desirable state of being” (p.21). Hence, people with an impairment are seen as ‘Other’ and are excluded. Disablism existed pervasively in this cultural context. These findings were similar to my previous exploration of the cultural understanding of disability in Taiwan (Readers can refer to Chapter 2).
The influence of disablism in Taiwan was particularly evident in participants’ social relationships. Barnes and Mercer (2003) note that “people in their everyday lives
291 act and think in ways that are ‘oppressive’ to disabled people, but do not always recognize their actions as having this effect” (p. 21). Thus, participants found “discrimination everywhere” in their social networks. Disablism caused impaired people to encounter great difficulties in getting support in their daily life, and in areas such as having a job or having an intimate relationship. Therefore, disablism was like a virus originating in Taiwanese culture, and then infected an impaired person’s social network. This weakened the person’s ability to receive support from others. Of course, this person might fall ill. It depended on how strong the virus was and how strong the protection the person had. In my study, the fortress ladies fell most seriously ill from disablism which attacked their minds and made them vulnerable and fragile. Compared with the fortress ladies, the social networkers had the ability to recover from the disablism virus so far. Although they were attacked, they could try to get other support to recover their psycho-emotional well-being. The strongest man was the mind man who seemed to have immunity against disablism because he found focusing on his spiritual development kept him away from hurt. The above was about participants’ self-recovery ability from disablism.
Implications for policy provision
As for the political context reducing or eliminating disablism in Taiwan, the Taiwanese government sets disability legislation to protect the rights of people with an impairment. The function of this legislation is supposed to provide support to Taiwanese with an impairment. However, most participants did not perceive much usefulness of disability legislation in their lives. For example, because of disablism, participants could not get a job, and the legislation could not help with this. This meant the political context could not attack the disablism rooted in Taiwanese culture. Therefore, disablism was a threat to the lives of people with an impairment in Taiwan.
I think there is a significant problem with the disability legislation fighting against disablism. Because the legislation is designed for Taiwanese with an impairment, it focuses on dealing with these people’s impairments rather than with the wider Taiwanese cultural perception of impairment. According to the official report of the living needs of people with impairments, it does not mention how much the government has done to improve the acceptance of them (Department of Statistics Ministry of the Interior, 2006). In addition, because the revised disability legislation in 2007 has begun to categorize people with an impairment via ICF, the government says their disability policy has caught up with the international trend (Ministry of the
292 Interior, 2009c). However, no participants cared about this, and it was not a reality in their lives.
In disability legislation, an emphasis on how to provide support to impaired people is needed. However, the issue of removing disablism from the culture should not be ignored. Although the government has tried to influence public attitudes through some measures such as advertising and public information, no participant thought they were sufficient to make a significant change. Thus, I argue the more urgent issue of the disability legislation is to develop more successful ways of removing disablism. Mille, Gillinson, and Parker (2004) argue that “the underlying problem with many efforts of influencing the public is that they are still reliant on an outdated model of governments’ relationship with citizens and consumers” (p. 63). In the modern world, the government should try to avoid using indoctrination or sermonising to influence people, but should “find contagious ideas” to make change happen (Mille et al., 2004, p. 71). The internet and mobile phone can be good media for the government or disability organizations to build relationships with the public. Sending creative messages, even simple ideas, as long as they can capture the public attention, can go a long way in a network (Mille et al., 2004). Although defeating disablism is not easy, it is the work that policy-makers have to face when they really want to bring about inclusion of people with an impairment in society. When amending disability policies, I suggest the Taiwan government should not only try to put the spirit of CRPD into the disability legislation, but also consider the characteristics of its own culture, that is, how disablism operates in the Taiwanese context. Then, the new version will be closer to the needs of people with an impairment, rather than an impossible dream.
Summary
This chapter has discussed the implications of Heideggerian hermeneutic phenomenology as the conceptual framework for exploring and understanding lived experience in other research areas. Further, it has also discussed the study participants’ voice of wanting to be included in three connected layers. They are participants’ social network, disability legislation and the Taiwanese culture. The implications of including them in research, service and policy provision are also addressed.
293 CHAPTER 11 THE CONTRIBUTION OF “IT IS MORE THAN JUST THE IMPAIRMENT” IN DEVELOPING A DISABILITY THEORY
The contribution of the developed theory “it is more than just the impairment” points to two issues. They are: a) dynamic interactions of the person and the context in which she or he lives b) a cultural dimension of disability theory
Each of these is detailed below.
11.1 Dynamic interactions of the person and the context in which she or he lives -- “Because I have mobility difficulties, I need friends’ assistance in my life. Hence, positive interpersonal interaction is very important to me” (Yugo)
According to Tom Shakespeare’s (2006) views on disability:
The approach to disability which I propose to adopt suggests that disability is always an interaction between individual and structural factors. Rather than getting fixated on defining disability either as a deficit or a structural disadvantage, a holistic understanding is required. The experience of a disabled person results from the relationship between factors intrinsic to the individual, and extrinsic factors arising from the wider context in which she finds herself. (p. 55)
The developed theory “it is more than just the impairment” in this study aligns well with his explanation of disability because it clearly tells how participants continuously interacted with the context in which they lived (see Chapter 5 for the developed theory). “It is more than just the impairment” identifies participants’ perceptions of living a life with a physical impairment as living with an impaired body, dealing with the mind, and dealing with the need for support, which represent what Shakespeare calls the intrinsic factors; and it identifies their perceptions of the context in which they were living their lives as their social network, disability legislation, as well as cultural attitudes towards their impairment, which corresponds to what he calls the extrinsic factors. The tight interaction between the intrinsic and extrinsic factors identified by participants forms their everyday life. Then, the constructed theory tells how these physically impaired individuals actively managed his/her life in the context. They shared three kinds of management of this:
294 when participants felt they were hurt in the context, they used the fortress to protect themselves from hurt; when they perceived they needed support, they tried to foster it; furthermore, a participant might see the difficulties brought about by having an impairment as a mission to accomplish in this life. Readers can refer to Chapters 6, 7, and 8 to see these participants’ stories. Thus, “it is more than just the impairment” demonstrates that their lives with the impairment had close and continued interactions between themselves and the context in which they lived.
11.1.1 My criticism of two models
In the earlier discussion of the social model of disability, I mentioned that professionals should also recognize its contribution because this model mainly directs people to see “disability” from a political angle but not the biological influences. The social model also inspired me to see people with an impairment as having expertise in their disability. Therefore, to gain a deeper understanding of disability, I had to approach their expertise by exploring their lived experiences of living their lives with an impairment. Along with the study findings and my experiences of undertaking the study, I have different views of the social model of disability and individual model of disability. My criticism of these two models and my suggestions on how to develop a more holistic understanding of disability are given in the following section, and the one after.
The developed theory challenges both the individual model of disability and the social model of disability. The theory apparently confronts the individual model of disability because it tells service providers that understanding an impairment itself does not equate to understanding the experience of disability. The social modellists argue that societal barriers disable people with an impairment that results in their disability. The social model of disability attributes disability as the responsibility of the society who needs to remove. However, “it is more than just the impairment” tells so a great deal about the relationship between impairment and disability. The theory starts by having an impaired body and then links to its effects on one’s mind (psycho-emotional well-being) and the need for support. Then, the theory tells how the interactions within one’s social network affect one’s body and mind. Furthermore, the theory shows how the cultural and legislative aspects influence one’s life with a physical impairment. The theory aligns well with Shakespeare’s views of disability which reveals complex interactions between the person and the context in which she or he lives. The quality of these interactions between an impaired individual and the context contributes to the person’s life quality. The social model of disability focuses on political identity but ignores the
295 important issue that “relationships” do matter to impaired people’s everyday life very much.
Moreover, disability activists who are schooled in the principles of the social model of disability often see medicine as the enemy (Hughes, 2009). Hughes (2009) finds “silence about biology has become impossible” (p. 684) and many disability activists have argued that to retain sharp distinctions between impairment and disability makes no sense (Hughes, 2009). I agree with this. The developed theory shows the close relationship between the impairment and the disability and I also think that people with an impairment and their service providers should try to build a collaborative relationship via negotiation and consultation. My position on disability studies is what Hughes (2009) calls “biological citizens” who see medicine as “a potential ally” (p. 679-680). The allied medical professionals who assist people with an impairment in enhancing their health are supposed to be treating them as whole people, instead of focusing on their impairment (Kim & Fox, 2006). Also, being allies, professionals should believe that “individuals with disabilities have expertise based on their own life experience and in many respects may be the best managers of their own health” (Kim & Fox, 2006, p. 485). For further details of how to build such relationships with people with an impairment, please see Chapter 9.
296 11.2 A cultural dimension of disability theory
The understanding of disability has been questioned and criticized for its theoretical deficits because it outweighs either impaired bodies or disablement (Abberley, 1997; Corker & Shakespeare, 2002; Lutz & Bowers, 2005; Paterson & Hughes, 2000). Paterson and Hughes (2000) argue that medical sociology emphasizes “biophysical normality” so that it is inappropriate to “consider the effects of discrimination and oppression” for theorizing disability (p. 35). Also, Thomas (2004) says “to date, medical sociologists have not been prepared to acknowledge that disability is associated with social oppression or systematic social exclusion” (p. 581). On the other hand, disability studies challenge the myth of ‘biophysical normality’ and represent the barriers that exclude and marginalize impaired people. Disability studies tend to define disability as a social problem: how society oppresses impaired people (Shakespeare & Watson, 2001). However, Hughes (2002) found that a sociological consideration of impairment has been forced to the edge of disability studies.
Edwards and Imrie (2003) conclude that “disability theory has tended to revolve around the dichotomy of the medical and social models of disability” (p. 240). Hence, there has been no adequate disability theory so far. Corker and Shakespeare (2002) argue:
We believe that existing theories of disability – both radical and mainstream – are no longer adequate. Both the medical model and the social model seek to explain disability universally, and end up creating totalizing, meta-historical narratives that exclude important dimensions of disabled people’s lives and of their knowledge. The global experience of disabled people is too complex to be rendered within one unitary model or set of ideas. (p. 15)
To build inclusive societies, empowering and emancipating the disadvantaged minority, it is necessary to theorize disability. Hence, more and more disability activists are devoting themselves to this development by using different theoretical terrains like postmodernism, poststructuralism, Marxism and feminism (Corker & Shakespeare, 2002; Meekosha, 1998, 2004; Morris, 2006; Thomas, 2002, 2004a).
However, increasing interest in developing a theoretical development of disability has not crossed “the boundaries of the Gulf Stream” (Meekosha, 2004, p. 731). Meekosha (2004) finds “these competing metropoles have failed to incorporate
297 either the peripheries or the developing world in their analyses, as though no other currents can enter their dialogues” (p. 731). The privileged minority worldviews of disability are drawn mainly from Western Europe and North America; however, most impaired people in the world do not live their lives there (Meekosha, 2011; Priestley, 2001b).
In seeking a global understanding of disability, this is not enough because “disability is a complex process, which involves a number of causal components. Within this, the role of culture and meaning is crucial, autonomous and inescapable” (Shakespeare, 1997, p. 225). Cultural views of disability are important for theorizing disability and might not be the same across cultures (McCollum & Chen, 2003; Meekosha, 2011; Sotnik & Jezewski, 2005; Swain et al., 2003). For example, the causation of impairment is usually interpreted as disease or genetic disorder in Euro-American countries; for Southeast Asian countries, having an impairment might be seen as a punishment for the wrongdoing of a family or its ancestors. People’s attitudes towards those born with an impairment tend to be negative and stigmatizing (Sotnik & Jezewski, 2005); however, in Songye of Zaire, one of the African societies, not all children born with an impairment are marginalized and stigmatized, and the word ‘disability’ does not exist in their language (Devlieger, 1995). Meekosha (2011) also argues that “race and disability in the global South are fluid concepts” and they cannot be separately discussed in the process of colonisation (p. 672). Sotnik and Jezewski (2005) conclude that “the meaning of disability is influenced by the cultural beliefs and values of consumers and service providers” (p. 26). Cultural differences play a key role in shaping the understanding of disability. Therefore, to understand disability in Taiwan is necessary to understand its cultural context and explore it within this context.
Furthermore, the question has arisen about whether people can directly apply the dominant notions of disability from the cores of the global economy in Western Europe and North America to the periphery (Meekosha, 2011). Meekosha (2011) finds “the Northern disability studies differentiation between chronic illness, impairment and disability cannot usefully explain the contemporary lived experiences of indigenous peoples” (p.672). In addition, Emma Stone’s attempt to undertake a social model-based study in China (1997) cited in Mercer (2002) showed “considerable difficulties in doing emancipatory disability research field-work in China, because it was perceived as an instrument of Western imperialism and at odds with Chinese experience and culture” (p. 236). According to Katsui and Koistinen (2008), “the cultural, social and economic contexts in non-Western countries are very different from the Western ones” (p. 753). Hence,
298 this shows that the validation of different national contexts has not been acknowledged (Meekosha, 2004, 2011; Mercer, 2002; Shakespeare & Watson, 2001). In addition, people with an impairment playing an active role and being the leaders or partners in conducting disability research is much more frequently seen in Western countries than in non-Western countries (Katsui & Koistinen, 2008). Thus, this study is located in Taiwan and shows the beginning of the development of a cultural dimension of disability theory by applying Heideggerian interpretive phenomenology. The developed theory points out that locating an impairment in the context is the first step for developing a more holistic disability theory. This issue is further detailed below.
11.2.1 Understanding disability starting from locating an impairment in the context – “We often experience pain for some unaccountable reason, and no one can understand why!” (Pearl)
Abberley (1996) contends that to understand disability, it is necessary to understand the impairment first “since impairment is the material substratum upon which the oppressive social structures of disablement are erected” (p. 63). This explains why the development of “it is more than just the impairment” starts from “living with an impaired body”. “Living with an impaired body” is identified in the forefront of the core theme, namely participants’ perceptions of living a life with a physical impairment, and it guides and initiates the subsequent building of the theory. Starting with having an impaired body, participants related it to how it influenced their feelings and thoughts (the mind), and how it extended to the support aspect they needed in their everyday life. Then their perceptions of their lives with a physical impairment connected with the context in which they lived. The multiple interactions between the physically impaired person and the context came alive (See Figure 5.2). This developed theory challenges those who see disability as an object: as a personal issue with no connection to society. Abberley (1996) concludes:
Disabled people have inhabited a cultural, political and intellectual world from whose making they have been excluded and in which they have been relevant only as problems. Scientific knowledge, including sociology, has been used to reinforce and justify this exclusion. A new sociology of disablement needs to challenge this ‘objectivity’ and ‘truth’ and replace it with knowledge which arises from the position of the oppressed and seeks to understand that oppression. (p. 77)
299 Furthermore, “it is more than just the impairment” clearly shows that without locating the impairment in the person’s context, the further theoretical development of disability would not be possible because the interpretation of impairment is “socially and culturally determined” (Shakespeare & Watson, 2001, p. 18). Thus, one of the criteria for developing a disability theory also needs to consider how the impairment is socially constructed. For example, the changing and expansion of impairment categories in Taiwan (Laws and Regulations Database of the Republic of China, 2007) demonstrates that the socially constructed impairment does not stay the same and it relates to “specific historical junctures” (Thomas, 2002, p. 47). Abberley (1996) explains “impairment … always and only occurs in a particular social and historical context which determines its nature” (p. 63). Furthermore, the socially constructed impairment categories are based on ‘disciplinary practices’ and of course it is “culturally complex” (Hughes, 2002, p. 69). Thus, Edwards and Imrie (2003) argue “an understanding of the interrelationships between disabled people’s bodily functions, and broader socio-cultural values and practices” is needed (p. 240).
Also, “it is more than just the impairment” shows the relation between impairment and disability as that an understanding of disability starts by locating the impairment in the context. This might provide a way to think about how to decrease the divergence between two dominant Western models of disability. Paterson and Hughes (2000) state:
There is a powerful convergence between biomedicine and the social model of disability with respect to the body. Both treat it as a pre-social, inert, physical object, as discrete, palpable and separate from the self (Hughes and Paterson 1997: 329)….The way to avoid this contradiction is to treat impairment, like disability, as a cultural construct and to admit to the possibility of a sociology or social model of impairment. (p. 42)
This study does not aim to elaborate either the medical model or the social model and let them become a disability theory, but emphasizes the importance of recognizing how “impairment” plays the role of the bedrock and the necessity to locate the impairment in the context for further understanding disability.
Summary
‘It is more than just the impairment’ challenges the disadvantages of understanding disability in a divided way which either ignores or focuses on
300 impairment, but recognizes the interactions between impaired individuals and their living context. Crow (1996) suggests that:
We need to focus on disability and impairment: on the external and internal constituents they bring to our experiences. Impairment is about our bodies’ ways of working and any implications these hold for our lives. Disability is about the reaction and impact of the outside world on our particular bodies. One cannot be fully understood without attention to the other, because whilst they can exist independently of each other, there are also circumstances where they interact. (p.218)
The grounded theory of “it is more than just the impairment” tells how living with an impairment influences a person’s life, such as his or her mind, social relationships, and how it would intertwine with the Taiwanese context. It provides a way to understand living a life with a physical impairment.
According to Atkin and Hussain (2003), “impairment can only be made sense of within the context of an individual’s personal, cultural and social diversity”. Thus, “it is more than just the impairment” provides a more complete way to understand living a life with a physical impairment in Taiwan, but is not necessarily suitable for all countries because “views of disability may differ across cultures” (McCollum & Chen, 2003). Furthermore, this developed theory has its cultural representative, though it cannot be generalized to all other Taiwanese with a physical impairment. However, significantly, the structure of the theory has the sensitivity to capture a multi-layered understanding of disability, which can contribute to the development of a global and holistic understanding of disability. Shakespeare and Watson (2001) argue “an adequate social theory of disability would include all the dimensions of disabled people’s experiences: bodily, psychological, cultural, social, political, rather than claiming that disability is either medical or social” (p. 20).
In this study, from the lived experiences of people with a physical impairment themselves, the understanding of disability reaches into the contextual aspects of their lives, including their physical environment and the cultural and political contexts influences in their lives. The theory presents the complexity of living a life with a physical impairment, and emphasizes the importance of the social context that people with impairments are engaging in. Thus the study extends on the work of the recognition of the importance of “lived experiences” in understanding disability – a major critique of the social model of disability (Crow, 1996; French, 1993; Morris, 2006; Shakespeare, 2006; Shakespeare & Watson, 2001; Thomas,
301 1999; Thomas & Corker, 2002). Furthermore, for those social modellists who argue the social model of disability should include the experiences of impairment, such as Carol Thomas’s (1999) work of “impairment effects” and “psycho-emotional dimension”, the developed theory extends on these by exploring more deeply the contexts in which participants are living their lives. Thus, “it is more than just the impairment”, by pointing to the importance of the contextual elements in which participants are living their lives has made a significant contribution to understanding disability and to the further development of disability theory internationally.
Conclusion of Section 4
In Section 4, I have addressed my reflection on understanding disability, recognized impaired people’s capacity of being agency, and suggested the need for and the way to build alliances with them. Also, the compatibility of the conceptual framework to guide exploring lived experiences in other research areas has been discussed; furthermore, I have examined three impressive lived experiences of participants, and discussed their implications for service, research and policy provision. In the last chapter of discussion, the attributes of the developed theory “it is more than just the impairment” are discussed. It contributes to theorizing disability in a more holistic and global way.
302 CONCLUSION
This study aimed to explore the understanding of living a life with a physical impairment in Taiwan for a group of adults with a physical impairment. There were seven study participants in total. The study’s findings are grounded in the developed theory “it is more than just the impairment”, which depicts the complexity and also the multifaceted diversity of study participants’ lives with the impairment in their living context. This developed theory challenges the simplicity of understanding disability either from the individual model or social model of disability, and aligns with Shakespeare’s interactional model of disability. The developed theory demonstrates a way to begin theorizing disability in a more holistic way. Also, the lived experiences of these study participants show the exclusion and disablism present in their everyday lives. Thus, the implications of developing a more inclusive society from the service, research as well as policy provision perspectives are given.
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316 Appendix 1 Approved ethical letter
317 Appendix 2 Letter to the professional contacts
Dear ,
As you may be aware, I am a student at Queensland University of Technology, Australia. I am undertaking a PhD program in the School of Humanities and Human Services. As part of this program, I am undertaking a pilot study to refine the research design and using it to help to conceptualize some disability themes for a better understanding of the main disability research for people with a physical disability in Taiwan.
As part of the pilot study, I am hoping to conduct a semi-structured personal interview with two Taiwanese adults (over the age of 20) with a physical disability living in a range of community-based settings restricted to live in Yunlin or Tainan County only. Specifically, I am interested in potential participants who have not been involved in the “In-house Evaluation of Assistive Device Service and Rehabilitation Training” project, an existing program established by the Ministry of the Interior in Taiwan. I am planning on conducting the interviews in December 2005 and January 2006.
It is in this regard that I am seeking your support. I am seeking your support to inform those people with a physical disability within your network who meet the above criteria about the study, and to give them the enclosed study information and invitation. I see this invitation procedure as a strategy to protect the privacy of these people. I would not require access to their names or addresses, nor would I require any additional information from you.
You may like to mention to people concerned that the interview will be quite informal and friendly. Topics that could be discussed include:
Experiences and perceptions as a person with a physical disability Cultural understanding of disability Impact of disability legislation Impact of disabled social protests Any other relevant issues that the participant wants to talk about
All information I gain during the course of the study will be strictly confidential.
My supervisor for the study is Dr Marie Knox who can be contacted on 61-7-3864-4614 or by email on [email protected].
318 Thank you for your kind attention. I would very much appreciate your help, and can make myself available for further discussions if necessary.
Yours sincerely
Hsiu-Ching Lin PhD candidate
319 Appendix 3 Invitation to potential participants (pilot study) TAPED VERSION IF REQUIRED BY PARTICIPANT
Hsiu-Ching Lin
from the School of Humanities and Human Services at the Queensland
University of Technology, Australia
would like to invite
______to take part in an interview during the months of December 2005 and
January 2006 to discuss your experiences and perceptions around
disability issues
(Please find more detailed information on the project enclosed)
If you would like to take part, please contact me on [email protected], 0911809951 (available between 15th and 31st of December) or send the back the acceptance form in the reply paid envelope enclosed
By Saturday 31 December 2005
Thank you for your interest.
320 Appendix 4 Information sheet for potential participants (pilot study) TAPED VERSION IF REQUIRED BY PARTICIPANT
What is disability in Taiwan: the views of a small group of Taiwanese adults with a physical disability
Hello, my name is Hsiu-Ching Lin. I am a PhD candidate in the School of Humanities and Human Services at Queensland University of Technology (QUT), Australia. With the approval of QUT, I am conducting the above study – a study concerned with exploring disability issues around experiences and perceptions held by Taiwanese adults with a physical disability.
A significant part of the study involves trialling the interview process planned for use in the study with a small number of people with similar characteristics to those involved in the main study.
______has nominated you as a person who might be interested in participating, and she is helping with this effort by forwarding you my invitation to take part in an interview on this topic.
If you would like to take part in this pilot study, I would meet with you at a suitable time and place. The in-depth interviewing process will be taken over two to three visits. Each interview should last for about an hour and a half, and I will provide some light refreshments for us to enjoy and a small gift for your contribution to this study.
Some topics we could talk about in the interview are:
How do you experience your life as a person with a physical disability? What is your understanding of disability? What are your views on your civil rights and fair opportunity, such as the education rights, working rights and social life? In what ways have cultural factors specific to Taiwan influenced the cultural understanding of disability? How do these cultural factors around disability fit in with your own experiences? What is the role or meaning of disability legislation in your live? What have been your experiences of legislative changes in disability laws? What is the role or meaning of disabled social protests in protecting human rights of people with a disability for you? Any other relevant issues you wish to discuss.
I will be the only person conducting the interviews. And, of course, all information I collect will be treated in the strictest confidence. Your name, your personal details or other information, that may identify you, will not be used in any part of this study.
Further, to reduce any risks of any other agency identifying you, participation in the interview will be arranged directly with me at QUT. Your contributions to the study will be greatly valued and will help significantly to contribute to a more complete understanding of disability in Taiwan for this group and provide a sound basis for future policy and service provision initiatives.
I would like to tape record the interview session to help me have an accurate record of the interview. Later, I will transcribe the tape and translate into English. Moreover, I will also request an assistant translator in assisting the translating work, and the person will be asked to keep all information completely confidential and sign the confidentiality of information agreement. However if you do not wish the interview to be recorded, then I will not do so.
Naturally, your participation in this interview is purely voluntary. You can choose not to take part in any aspect of the interview and you can withdraw from the interview at any time.
At the end of this study, (around March-April 2008), I will be pleased to send you a summary of the results of the study. I hope that you will find this interesting and of use.
If you have any questions about the study, please contact me on [email protected] or on 0911809951 available in Taiwan between 15th of December in 2005 and 15th of January in 2006. Outside this period, you can contact me on 61-7-3343 2286. If you have any complaints or concerns about the ethical conduct of the study, please contact the QUT’s Research Ethics Officer on 61-7-3864 2340 or [email protected]. Otherwise, you can contact Dr. Marie Knox, the principal supervisor for the study on 61-7-3864 4614. If language assistance is needed, you can contact Dr. Theresa Chiu, the associate supervisor for the study, also an associate professor of the Graduate Institute of Rehabilitation Counselling National Taiwan Normal University, Taiwan on (02)23223382 ext156, for forwarding your complaints or concerns to Dr. Marie Knox or the QUT’s Research Ethics Committee.
Yours sincerely
HSIU-CHING LIN PhD candidate
322 Appendix 5 Acceptance form for use by potential participants (pilot study) TAPED VERSION IF REQUIRED BY PARTICIPANT
ACCEPTANCE FORM
I would like to take part in an interview with Hsiu-Ching Lin, a PhD student in the School of Humanities and Human Services at the Queensland University of Technology in Australia to discuss my experiences and perceptions around disability issues.
My Name is: ______
A Phone number where I can be reached is: ______
My corresponding address: ______
My e-mail (if available): ______
Please post this form in the reply paid envelope enclosed or contact me on [email protected] or 0911809951(available between 15th and 31st of December, 2005)
Thank you very much and I look forward to meeting you
Hsiu-Ching Lin PhD candidate
323 Appendix 6 Consent form (pilot study participants) TAPED VERSION IF REQUIRED BY PARTICIPANT
AGREEMENT TO PARTICIPATE IN RESEARCH PROJECT
I,______agree to help Hsiu-Ching Lin of the School of Humanities and Human Services at Queensland University of Technology (QUT) in Australia with her research about What is disability in Taiwan: the views of a small group of Taiwanese adults with a physical disability.
This will mean that:
Hsiu-Ching Lin will meet with me at place we both agree on for approximately an hour and a half on 2 or 3 occasions at a place that is convenient for both of us.
Topics Hsiu-Ching Lin will discuss with me include:
How do I experience my life as a person with a physical disability? What is my understanding of disability? What are my views on my civil rights and fair opportunity, such as the education rights, working rights and social life? In what ways have cultural factors specific to Taiwan influenced the cultural understanding of disability? How do these cultural factors around disability fit in with my own experiences? What is the role or meaning of disability legislation in my live? What have been my experiences of legislative changes in disability laws? What is the role or meaning of disabled social protests in protecting human rights of people with a disability for me? Any other relevant issues I wish to discuss.
If I agree, Hsiu-Ching Lin will tape record our discussions to help keep an accurate record of what I have said. I can refuse to have all of our discussion or any part of our discussions tape recorded. I understand that:
Information given by me is strictly confidential and will be unavailable to anybody except Hsiu-Ching Lin and the assisting translator. My name will not be used in any report on this research. I can contact Hsiu-Ching Lin on 0911809951 available in Taiwan or 61-7-3343 2286 available in Australia at a reasonable hour to discuss any aspect of my participation in the research. If I am not happy with the way that Hsiu-Ching Lin is conducting the study, I can contact the QUT’s Research Ethics Officer on 61-7-3864 2340 or [email protected]. Otherwise, I can contact Dr. Marie Knox, the principal supervisor for the study on 61-7-3864 4614. If language assistance is needed, I can contact Dr. Theresa Chiu, the associate supervisor for the study, also an associate professor of the Graduate Institute of Rehabilitation Counselling National Taiwan Normal University, Taiwan on (02)23223382 ext156, for forwarding my complaints or concerns to Dr. Marie Knox or to the QUT’s Research Ethics Committee. I don’t have to consent to take part in this study if I don’t want to. If I do consent, I can revoke my consent at any time and stop being part of the research.
I have read and understood this form.
I agree to take part in Hsiu-Ching Lin’s research “What is disability in Taiwan: the views of a small group of Taiwanese adults with a physical disability”
Participant’s signature______Date: ______
Researcher’s signature: ______Date: ______
325 Appendix 7 Interview guide for pilot study
INTERVIEW GUIDE
Primary Questions—experiences and perceptions as a person with a physical disability
How do you experience your life as a person with a physical disability?
Can you share with me how do you experience your life as a person with a physical disability?
Have you had any experiences of being labelled as a person with a physical disability or as a handicapped person?
If yes, would you mind telling me what have your experiences been and how have you felt and perceived it?
What is your understanding of disability?
Can you tell me what do you think physical disability is?
What is its impact (having a physical disability) on your life?
What are your views on your civil rights and fair opportunity, such as the education rights, working rights and social life?
Can you tell me what your views on your civil rights and fair opportunity are?
i) such as the education rights ii) such as the working rights iii) such as the social life iv) any other issues you would like to raise
Secondary Questions—related to cultural understanding of disability and legislation impact
1) Culture
In what ways have cultural factors specific to Taiwan influenced the cultural understanding of disability?
In your opinion, what are the cultural factors in Taiwan influencing people’s understanding of disability?
i) such as family ii) such as relatives and friends iii) such as religion iv) such as the societal value v) any other issues you would like to raise
And do these cultural factors also affect your own understanding of disability?
If yes, how do these cultural factors affect your own understanding of disability?
326 How do these cultural factors around disability fit in with your own experiences?
Do you think these cultural factors around disability fit in with your personal experiences?
If yes, how do these cultural factors around disability fit in with your own experiences?
If no, can you tell me more in detail?
And to what extent does the cultural understanding of disability not fit in with your experiences?
2) Legislation
What is the role or meaning of disability legislation in your life?
Can you tell me what is the role or meaning of disability legislation in making sure your rights are protected?
What have been your experiences of legislative changes in disability laws?
Have you had any experiences of legislative changes in disability laws?
If yes, can you tell me what your experiences and perceptions of these legislative changes are?
3) Social protest
What is the role or meaning of disabled social protests in protecting human rights of people with a disability for you?
Can you tell me what is the role or meaning of disabled social protests to you in protecting human rights of people with a disability?
i) such as in the aspect of working opportunity ii) such as in the aspect of inclusion iii) other aspect you would like to raise
Any other relevant issues you wish to discuss.
Do you have any other issues you would like to talk?
327 Appendix 8 The pilot study feedback form
Do you think the content of the ethics forms (information sheets, invitation form, acceptance form and consent form) is clear to you? How do you think the researcher has answered any of your doubts related to this research? How do you feel in the interviewing process? How smoothly is the interviewing process? Do you think your experiences and perceptions of disability are deeply explored in the interview sessions? Is there any thing important to you missing to be discussed in the interview sessions? Do you think the interview is helpful to you? If yes, how? To the end of interview, how do you feel? Any other issues about the interview you would like to discuss.
328 Appendix 9 Agreement to use information from the pilot study in the main study. WILL BE TRANSLATED INTO TAIWANESE LANGUAGE
AGREEMENT TO USE INFORMATION FROM THE PILOT STUDY IN THE MAIN STUDY
I, ______agree to continue to help Hsiu-Ching Lin, of the School of Humanities and Human Services at Queensland University of Technology (QUT) in Australia with her research for her Doctor of Philosophy degree about What is disability in Taiwan: the views of a small group of Taiwanese adults with a physical disability. I agree to allow her to use the information I provided during the interviews conducted as part of the pilot study, to be used within the main study.
Hsiu-Ching Lin has explained to me that:
The information I provided as part of the pilot study is considered highly valuable and relevant to the main study.
The information I provided will offer continuing insights for understanding disability in Taiwan.
If I agree, this will mean that the information Hsiu-Ching Lin and I discussed during the initial interview(s) and the member checking interview(s) will continue to be analysed and used by Hsiu-Ching Lin throughout the rest of her research study. It will also be used in the final report.
I understand that:
Information given by me is strictly confidential and will be unavailable to anybody except Hsiu-Ching Lin and the assisting translator. My name will not be used in any report on this research. I can contact Hsiu-Ching Lin on 0911809951 available in Taiwan or 61-7-3343 2286 available in Australia at a reasonable hour to discuss any aspect of my participation in the research. If I am not happy with the way that Hsiu-Ching Lin is conducting the study, I can contact the QUT’s Research Ethics Officer on 61-7-3864 2340 or [email protected]. Otherwise, I can contact Dr. Marie Knox, the principal supervisor for the study on 61-7-3864 4614. If language assistance is needed, I can contact Dr. Theresa Chiu, the associate supervisor for the study, also an associate professor of the Graduate Institute of Rehabilitation Counselling National Taiwan Normal University, Taiwan on (02)23223382 ext156, for forwarding my complaints or concerns to Dr. Marie Knox or to the QUT’s Research Ethics Committee. I don’t have to consent to continue to take part in this study if I don’t want to. If I consent, I can revoke my consent at any time and stop being part of the research.
I have read and understand this form.
I agree to continue to take part in Hsiu-Ching Lin’s research “What is disability in Taiwan: the views of a small group of Taiwanese adults with a physical disability”
329
Participant’s Signature
Name: ______Date: ______
Signature: ______
Researcher’s Signature
Name: ______Date: ______
Signature: ______
330 Appendix 10 Request for local organisational assistance in the invitation procedure of main study
Dear,
As you may be aware, I am a student at Queensland University of Technology, Australia. I am undertaking a PhD of Social Science program in the School of Humanities and Human Services. As part of this program, I am undertaking a main study to gain a better understanding of disability for people with a physical disability in Taiwan. I have attached a copy of the proposal of the study for your information.
As part of the study, I am hoping to conduct a semi-structured personal interview with a small number of Taiwanese adults (4 people over the age of 20) with a physical disability living in a range of community-based settings restricted to live in Yunlin or Tainan County only.
It is in this regard that I am seeking your support. I am seeking your support to inform those potential participants who meet the above criteria about the study, and to give them the enclosed study information and invitation. I see this invitation procedure as a strategy to protect the privacy of these people. I would not require access to your files nor would I require any other information from you.
You may like to mention to people concerned that the interview will be quite informal and friendly. Topics that could be discussed include:
Experiences and perceptions as a person with a physical disability Cultural understanding of disability Impact of disability legislation Impact of disabled social protests Any other relevant issues that the participant wants to talk about
All information I gain during the course of the study will be strictly confidential. Neither the disability organization nor the participants concerned will be able to be identified from any reports emerging from the study.
My supervisor for the study is Dr Marie Knox who can be contacted on 61-7-3864-4614 or by email on [email protected].
Thank you for your kind attention. I would very much appreciate your help, and can make myself available for further discussions if necessary.
Yours sincerely
Hsiu-Ching Lin PhD candidate
331 Appendix 11 Approval form for use by the assisting disabled welfare organizations
ACCEPTANCE FORM
______would like to take part in assisting in the recruitment of main study participants and issuing the invitations to the potential participants during the research period between October and December 2006 with Hsiu-Ching Lin in the School of Humanities and Human Services at the Queensland University of Technology in Australia.
The local organization: ______
Corresponding address: ______
Contact personnel: ______
Phone number: ______
Website: ______
Yours truly,
Hsiu-Ching Lin PhD candidate
332 Appendix 12 Invitation to potential participants TAPED VERSION IF REQUIRED BY PARTICIPANT
Hsiu-Ching Lin
from the School of Humanities and Human Services at the Queensland University of
Technology, Australia
would like to invite
______to take part in an interview during the months of November 2006 and February
2007 to discuss your experiences and perceptions around disability issues
(Please find more detailed information on the project enclosed)
If you would like to take part, please contact me on [email protected], 0911809951 (available between November and December in 2006) or send the back the acceptance form in the reply paid envelope enclosed
By Sunday 31 December 2006
Thank you for your interest. Appendix 13 Information sheet for potential participants TAPED VERSION IF REQUIRED BY PARTICIPANT
What is disability in Taiwan: the views of a small group of Taiwanese adults with a physical disability
Hello, my name is Hsiu-Ching Lin. I am a PhD candidate in the School of Humanities and Human Services at Queensland University of Technology (QUT), Australia. With the approval of the disability organization and QUT, I am conducting the above study – a study concerned with exploring disability issues around experiences and perceptions held by Taiwanese adults with a physical disability.
A significant part of the study involves conducting in-depth interviews with adults with a physical disability living in a range of community-based settings in the Yunlin or Tainan County in Taiwan who are more than 20 years.
______has nominated you as a person who might be interested in participating, and ______is helping with this effort by forwarding you my invitation to take part in an interview on this topic.
If you would like to take part, I would meet with you at a suitable time and place. The in-depth interviewing process will be taken over two to three visits. Each interview should last for about an hour and a half, and I will provide some light refreshments for us to enjoy and a small gift for your contribution to this study.
Some topics we could talk about in the interview are:
How do you experience your life as a person with a physical disability? What is your understanding of disability? What are your views on your civil rights and fair opportunity, such as the education rights, working rights and social life? In what ways have cultural factors specific to Taiwan influenced the cultural understanding of disability? How do these cultural factors around disability fit in with your own experiences? What is the role or meaning of disability legislation in your live? What have been your experiences of legislative changes in disability laws? What is the role or meaning of disabled social protests in protecting human rights of people with a disability for you? Any other relevant issues you wish to discuss.
I will be the only person conducting the interviews. And, of course, all information I collect will be treated in the strictest confidence. Your name, your personal details or other information, that may identify you or any organizations with which you are associated, will not be used in any part of this study.
Further, to reduce any risks of the disability organization or any other agency identifying you, participation in the interview will be arranged directly with me at QUT.
334 Your contributions to the study will be greatly valued and will help significantly to contribute to a more complete understanding of disability in Taiwan for this group and provide a sound basis for future policy and service provision initiatives.
I would like to tape record the interview session to help me have an accurate record of the interview. Later, I will transcribe the tape and translate into English. Moreover, I will also request a transcribing assistant in assisting with the transcribing work, and the person will be asked to keep all information completely confidential and sign the confidentiality of information agreement. However if you do not wish the interview to be recorded, then I will not do so.
Naturally, your participation in this interview is purely voluntary. You can choose not to take part in any aspect of the interview and you can withdraw from the interview at any time.
At the end of this study, (around March-April 2008), I will be pleased to send you a summary of the results of the study. I hope that you will find this interesting and of use.
If you have any questions about the study, please contact me on [email protected] or on 0911809951 available in Taiwan between November in 2006 and Febuary in 2007. Outside this period, you can contact me on 61-7-3343 2286. If you have any complaints or concerns about the ethical conduct of the study, please contact the QUT’s Research Ethics Officer on 61-7-3864 2340 or [email protected]. Otherwise, you can contact Dr. Marie Knox, the principal supervisor for the study on 61-7-3864 4614. If language assistance is needed, you can contact Dr. Theresa Chiu, the associate supervisor for the study, also an associate professor of the Graduate Institute of Rehabilitation Counselling National Taiwan Normal University, Taiwan on (02)23223382 ext156, for forwarding your complaints or concerns to Dr. Marie Knox or the QUT’s Research Ethics Committee.
Yours sincerely
HSIU-CHING LIN PhD candidate
335 Appendix 14 Acceptance form for use by potential participants TAPED VERSION IF REQUIRED BY PARTICIPANT
ACCEPTANCE FORM
I would like to take part in an interview with Hsiu-Ching Lin, a PhD student in the School of Humanities and Human Services at the Queensland University of Technology in Australia to discuss my experiences and perceptions around disability issues.
My Name is: ______
A Phone number where I can be reached is: ______
My corresponding address: ______
My e-mail (if available): ______
Please post this form in the reply paid envelope enclosed or contact me on [email protected] or 0911809951 (available between November and December in 2006)
Thank you very much and I look forward to meeting you
Hsiu-Ching Lin PhD candidate Appendix 15 Consent form TAPED VERSION IF REQUIRED BY PARTICIPANT
AGREEMENT TO PARTICIPATE IN RESEARCH PROJECT
I,______agree to help Hsiu-Ching Lin of the School of Humanities and Human Services at Queensland University if Technology (QUT) in Australia with her research about What is disability in Taiwan: the views of a small group of Taiwanese adults with a physical disability.
This will mean that:
Hsiu-Ching Lin will meet with me at place we both agree on for approximately an hour and a half on 2 or 3 occasions at a place that is convenient for both of us.
Topics Hsiu-Ching Lin will discuss with me include:
How do I experience my life as a person with a physical disability? What is my understanding of disability? What are my views on my civil rights and fair opportunity, such as the education rights, working rights and social life? In what ways have cultural factors specific to Taiwan influenced the cultural understanding of disability? How do these cultural factors around disability fit in with my own experiences? What is the role or meaning of disability legislation in my live? What have been my experiences of legislative changes in disability laws? What is the role or meaning of disabled social protests in protecting human rights of people with a disability for me? Any other relevant issues I wish to discuss.
If I agree, Hsiu-Ching Lin will tape record our discussions to help keep an accurate record of what I have said. I can refuse to have all of our discussion or any part of our discussions tape recorded.
337 I understand that:
Information given by me is strictly confidential and will be unavailable to anybody except Hsiu-Ching Lin and the transcribing assistant. My name will not be used in any report on this research. I can contact Hsiu-Ching Lin on 0911809951 available in Taiwan or 61-7-3343 2286 available in Australia at a reasonable hour to discuss any aspect of my participation in the research. If I am not happy with the way that Hsiu-Ching Lin is conducting the study, I can contact the QUT’s Research Ethics Officer on 61-7-3864 2340 or [email protected]. Otherwise, I can contact Dr. Marie Knox, the principal supervisor for the study on 61-7-3864 4614. If language assistance is needed, I can contact Dr. Theresa Chiu, the associate supervisor for the study, also an associate professor of the Graduate Institute of Rehabilitation Counselling National Taiwan Normal University, Taiwan on (02)23223382 ext156, for forwarding my complaints or concerns to Dr. Marie Knox or to the QUT’s Research Ethics Committee. I don’t have to consent to take part in this study if I don’t want to. If I do consent, I can revoke my consent at any time and stop being part of the research.
I have read and understood this form.
I agree to take part in Hsiu-Ching Lin’s research “What is disability in Taiwan: the views of a small group of Taiwanese adults with a physical disability”
Participant’s signature______Date: ______
Researcher’s signature: ______Date: ______
338 Appendix 16 The interview guide: amendment in light of pilot study findings
INTERVIEW GUIDE
1) Experiences and perceptions as a person with a physical disability
Experiences as a person with a physical disability
Can you share with me how do you experience your life as a person with a physical disability?
Can you share with me your experiences of socialising with other people around you?
Have you had any experiences of being labelled as a person with a physical disability or as a handicapped person?
If yes, would you mind telling me what have your experiences been and how have you felt and perceived it?
Your understanding of disability
Can you tell me what do you think physical disability is?
What is the impact of having a physical disability on your life?
2) The cultural understanding of disability in Taiwan
In your opinion, what are the cultural factors in Taiwan influencing people’s understanding of disability?
i) such as religion
ii) such as language or terminology
iii) such as societal values towards people with a disability
iv) any other factors
And how do these cultural factors affect your own understanding of disability?
And what do you think about the impact of the cultural factors on the understanding of disability of people you feel close to?
3) Disability legislation
The meaning of disability legislation
Can you tell me what is the role or meaning of disability legislation in making sure your rights are protected?
339 Experiences of or views on legislative changes
Can you tell me what your views of legislative changes are?
Have you had any personal experiences of legislative changes in disability laws?
If yes, can you tell me what your experiences and views of these legislative changes are?
Views on civil rights and equal opportunity
As a Taiwanese citizen, can you tell me what your views on your civil rights and equal opportunity are?
i) such as the environmental accessibility rights
ii) such as the education rights
iii) such as the employment rights
iv) any other issues around rights or equal opportunity you would like to raise
4) Views on the social model of disability
Can you share with me what you think “your disability is imposed by non-disabled people” means?
And how is your disability imposed by non-disabled people?
5) Assisting in the inclusion of people with a disability into the Taiwan community
Education & Social protest
In your opinion, how might the inclusion of people with a disability into the Taiwan community be promoted or encouraged?
i) such as educating non-disabled people to remove prejudices and discrimination toward people with a disability
ii) such as social protests by people with a disability to achieve their rights
iii) any other issues around the inclusion of people with a disability into the Taiwan community you would like to raise
Any other issues about your experiences and views as a person with a physical disability living in Taiwan that you would like to discuss.
Thank you!
340 Appendix 17 Interview transcribing assistant confidentiality of information agreement
CONFIDENTIALITY OF INFORMATION AGREEMENT
I ______am employed by Hsiu-Ching Lin in the School of Humanities and Human Services at the Queensland University of Technology to assist in transcribing interview data forming part of the study “What is disability in Taiwan: the views of a small group of Taiwanese adults with a physical disability” being conducted by PhD candidate Hsiu-Ching Lin.
I undertake to maintain the complete confidentiality of any information I obtain as a result of my transcribing duties, and not to divulge any of this information to any other person.
Signature: ______
Date: ______
341 Appendix 18 Table 3-6: The developed theory: it is more than just the impairment and its associated themes and categories
Table 3: Depiction of the associated categories and categorical properties of participants’ perceptions of themselves as living a life with a physical impairment
Definition: referring to how participants perceived themselves as living a life with a physical impairment
Perceptions of living a life with a physical impairment (Core theme)
Category Subcategories (1) Subcategories (2) Exemplifying data
Living with an Living with pain Discomfort “I have abdominal pain all night, so I take medicine once or twice at midnight…If it continues, I will impaired body not fall asleep all night!” (Hilda) refers to how “my nerve is painful and so is the bone” (Pearl) participants “if I felt cold, I would vomit… keep vomiting and I couldn’t eat anything!” (Mary) perceived having a “The process of taking an x-ray …when transferring, if I were not careful I would fall and then my physical breathing would be troublesome; or if the side of my body was not exactly straight, I would feel pain impairment as right here!” (Pearl) influencing their bodies Incurable “my nerve was injured so it won’t recover” (Hilda)
impairment “she is a person who we cannot operate on. Her situation is chronic, and it’s impossible to cure or
alleviate [her impairment]” (Pearl)
“The sole of my foot gets hurt easily …because my foot has no sensation” (Joyce)
“It begins as slowly losing strength, the whole body feels weak” (Pearl)
“I realize that maybe after several years, … the supporting force of my knee will become weaker and
weaker” (Joyce)
“When I get older, I will have less physical strength” (Mary)
342 Mobility difficulties “My body doesn’t have the strength below my neck to let me walk” (Pearl)
“The nerve was broken so my whole body is unable to move!” (Hilda)
“I am awkward going to the toilet and walking” (Joyce)
“I can’t do exercise like playing baseball, soccer or running” (Joyce)
“like turning my body over and then sitting up everyday, it’s very laborious!” (Pearl)
“my feet are unable to stand so that my hands can’t reach something at a high level” (Venice)
Dealing with the Fragile mind Feeling “Because we definitely have barriers in our mind, because our interpersonal relationship can’t be as mind refers to how uncomfortable with good as some people’s! Because we envy your ability to walk and wonder why can’t I? We do, we participants having a physical feel uncomfortable!” (Pearl) perceived having a impairment “It is very difficult for me [to admit I am a disabled person] because I was not born like this” (Joyce) physical impairment as Having hurtful “When I try to accept myself and I do anything and ask myself for a high standard [like completing influencing their experiences a task], other people still treat us like this [as if we need more training, but we don’t. We just need thoughts and help], I can’t take it anymore!” (Pearl) feelings “I was told that I was a cripple by a boy in the fourth year of primary school... I still remember who
he was. Although I don’t know his name, I still remember what he looked like!” (Joyce)
Non-fragile mind Accepting living with “I think it depends on whether you accept yourself!...So these [interviewing questions] are not
a physical impairment taboo topics for me!” (Yugo)
“we were born like this” (Mary)
“I had bad luck!” (Hilda)
Not having hurtful “I haven’t been deeply hurt!…So to some extent I am more optimistic and positive” (Yugo)
343 experiences “those words don’t produce strong hurt or something to us” (Judy)
“I found out that there’s no difference between me and normal people after I stepped into society,
also getting along well, I found that environment in childhood was very important!” (Judy)
Strong mind “our whole mind is intact, that’s good…I don’t care that my feet or my hands are not good because
these are not important!” (Venice)
Dealing with the Recognising needed Self-reliance “People with a disability still need to be self-reliant…Today, I need to live by myself. If I have family need for support support or something happens, I can die, anyway my family can help me deal with it at least, being such an refers to irresponsible person! But I am alone today. If I die, no one can help me deal with it” (Pearl) participants’ “to have a job and I am able to feed myself” (Joyce) perceptions that they needed Getting others to help “Because I have mobility difficulties, I need friends’ assistance in my life” (Yugo) continual support in “Although there are some things I can do, I still need people’s assistance” (Mary) living their lives “I can’t move and turn my body over so I depend on others’ help…If no one took care of me, how with a physical could I live!” (Hilda) impairment “We have living assistance for low-income households! …And the kids have subsidies from the
children’s center... Otherwise, how would I afford the family living expenses?” (Mary)
“to educate children until they were undergraduates was not easy! It needed the help of social
welfare” (Judy)
“The Department of Social Welfare doesn’t know our situation! Otherwise, it would help us more or
less. Doesn’t it need to bother that we don’t have enough money?” (Hilda)
Company “Last time my second daughter wanted to make me live in a nursing home. I cried not to go! If I live
344 there, I will lose company [crying]” (Hilda)
“like in our association [for impaired people], the handicapped marry a handicapped, and they keep
each other company” (Mary)
“actually I am afraid of being alone!... when everyone is on holiday, only I am alone” (Yugo)
Fear of Losing current “it’s impossible that my family always takes care of me like now!” (Yugo) unavailability of support “it is impossible to depend on them [her parents] for my whole life” (Joyce) support in their lives “when he was alive,…he would help me do trivial things!”(Mary)
“My husband has had a stroke so he can’t make money, and his head is not clear. Neither can I.
Neither can my son [because he is in jail]” (Hilda)
“We don’t have the status of a low-income family this year!” (Mary)
“when non-handicapped people were organizers, they handled the task very well. But later these
organizers were handicapped, and they could not accomplish the tasks!” (Venice)
Aging “When I was younger, I was able to climb upstairs…but it’s hard for me now. I don’t have enough
physical strength. There is a difference when I get older!” (Mary)
“I can press the keyboard now, but gradually I might not be able to press it and I will not able to do
anything!” (Pearl)
Being a burden “Talking about caring [for people with an impairment] is a heavy burden”(Joyce)
“When handicapped people depend on their partners for everything, one day they will run out of
patience...so they will leave” (Venice)
“if I had not married, who would feed me?!” (Mary)
345 Table 4: Depiction of the categories and categorical properties of participants’ perceptions of the context in which they were living their lives
Definition: referring to how participants perceived how the context they lived in (i.e. Taiwan) influenced their living with a physical impairment
Perceptions of the context in which participants were living their lives
Categories Subcategories Subcategories (2) Subcategories Exemplifying data
(1) (3)
Social Hurtful Discrimination In personal “[Her brothers thought] they took care of parents, why did they need to take care of network relationships everywhere relationships me?” (Mary) refers to “Because I became like this, the daughter-in-law was scared. She was afraid of looking participants’ after us so they divorced” (Hilda) interpersonal “of course I want to marry a non-disabled person! But I have to think about whether relationships people want a woman like me!” (Mary) with people “still some people on the Internet know I am disabled and then they don’t send anymore around them messages. They said you are a cripple! It makes me feel very hurt and very sad!” (Pearl) in their everyday lives In social settings “The pastor would invite us to go to church. After going to church, I found out one thing:
they would praise someone for how much they donated. But for those disabled friends,
they didn’t care about us. Their point was just to invite us and then to let people see
what they were doing [participant’s emphasis]!” (Pearl)
“Many handicapped people didn’t think they were handicapped! ... So he [ a member]
looked down upon us we who were handicapped from birth, he thought we were
handicapped people, but he wasn’t” (Venice)
346 In employment “Speaking about employment [for people with an impairment], I think it’s somewhat
discriminative!” (Yugo)
“It is very difficult for us to get a job” (Joyce)
“in the beginning I was full-time, and then they found someone, the boss told me: You
can go home [participant’s emphasis]. So I was fired, and a lady replaced me” (Mary)
“I am a low-cost laborer!” (Mary)
“Such as promotion …they thought because you were a handicapped person, other
people could do it but you couldn’t” (Venice)
Professional “The doctor would think that he has the authority and you can’t challenge it” (Joyce) dominance “From the responses and actions of the medical staff, I felt very upset!... It was just like
they were lifting a pig, an animal. Just pull her there and put it down, as well as change
a bed! It was terrible the way they spoke about me!” (Pearl)
“I was an abused child there. I was hit and dragged from the wheelchair to the ground
and made to drink urine!” (Pearl)
“I have fallen down; why you said I didn’t stand well so that I fell down! This is not the
point!” (Pearl)
“Only when the doctor becomes a patient, can he appreciate how a patient feels” (Joyce)
Other people’s “from my own experience, I wanted to have a cup of water or bothered someone when unwillingness to I wanted to go to the toilet, and I needed to see if they were happy to do so. Of course, support kids had facial expressions showing whether they were willing or unwilling to each other.
But as I grew up, I found we adults are also like this: I need to help you for everything,
347 can’t you figure it out by yourself?” (Pearl)
“I encounter more barriers at home instead…Perhaps my parents are used to it [the
current mode of taking care of him] so they think to keep it is the best” (Yugo)
“After the children grow up, they have their work. I am alone, and my husband died. I Loneliness Lacking feel…lonelier!” (Mary) closeness in
personal “Friends don’t necessarily understand me! … They don’t have any impairment, and they relationships tell me not to think so much about it!” (Pearl)
“I found nobody would listen to me!... But I felt they treated clients differently, and they
were willing to sit down and listen to what their clients wanted to say!” (Pearl)
“Sometimes they dined out together, but I didn’t know. …Everyone talked about the
same thing and had fun, and I didn’t know, so it was very obvious that I felt isolated!”
(Pearl)
“Being disabled people, we want to make friends only via the Internet and chat rooms,
and it is seldom possible for us to make friends in the real world!” (Pearl)
I can’t do things “I can’t go out for fun….I can’t do things when I want to as much” (Joyce)
when I want to as
much “I can’t go to church! If I were not impaired, I could go to church. However, it’s
impossible, really impossible! This is really a very serious handicap [participant’s
emphasis]!” (Hilda)
348 “I worked hard before. I didn’t select jobs and I just did it. But now I can’t move and just
open my eyes and watch TV all the time!” (Hilda)
“People like you sometimes go to a movie, but for me, it’s impossible!” (Pearl)
“I didn’t go on the graduation trip! I was impressed by it…I still wanted to have fun!
Children all love that!” (Joyce)
Social Supportive From personal Family There were many things at home they could help me with. They helped me mopping, network relationships relationships sweeping, hanging up and bringing laundry in!” (Judy) refers to “she [her daughter] lifts me out and in, buys food, does many things. She does participants’ everything!” (Hilda) interpersonal “My parents loved me dearly!” (Mary) relationships “A peach cannot take pressure! A peach is very soft, cannot be touched, and is protected with people very well” (Joyce) around them “I think… [they are] still in the protection stage…when they want to go out for in their something, they would think: we are going out, won’t you come with us? If everyday lives something happened to you, what would we do [participant’s emphasis]?” (Yugo)
“more than ten people in my big family loved me dearly!” (Judy)
“He would help me do the housework” (Mary)
“at that time my mother-in-law took care of my two boys almost until they went to
kindergarten” (Judy)
Friends “my friend sometimes helps me use the washing machine to wash clothes and then dry
349 them in the sun” (Mary)
“I buy my meals at the canteen…otherwise, my schoolmates buy it outside the campus
for me” (Yugo)
“I go out with some friends. When we are leaving, firstly they [non-handicapped people]
park our scooters well, …after we go up and leave, they leave” (Judy)
“I enjoy very happy and lively interactions with them!” (Yugo)
“We met each other through our matchmaker [Mary’s friend]” (Mary)
School teachers “if my teacher asked for ten thousand words of assignment, he might say: ok, you don’t
have to write but you need to have an oral exam with me” (Yugo)
“When my elder daughter went to kindergarten, …the school teacher thought my
family’s financial situation was bad, and I and my husband were handicapped,…so they
gave us an exemption spontaneously!” (Mary)
Work colleagues “they would help me move them [materials and tools for making yarn], and didn’t
refuse!” (Mary)
From disability “It fights for some of our benefits! See what benefits we have and what we need. services Members have a monthly publication! You can read it.…it tells you what activities the
organization are running…and sees what you are interested in!” (Mary)
“when I was in the institution, the whole environment was around people such as me!
When we were back to the hospital, it’s like this. But we also went to school normally!
That means [pause] we had interactions with non-disabled children” (Judy)
350 “We didn’t know we could exercise before… He taught me to use my feet to exercise,…I
think it’s very useful!…and won’t cause us to be handicapped twice!” (Venice)
“when I was an undergraduate freshman, teachers in the resource room told us the first
thing was if we really could not do something, actually schoolmates would be very
enthusiastic to help us, so we shouldn’t be afraid!” (Yugo)
“many volunteers went with us…they didn’t leave us because they were tired, and they
still took us to walk together!” (Yugo)
Perceptions of the context in which participants were living their lives
Categories Subcategories Subcategories (2) Subcategories Exemplifying data
(1) (3)
Cultural Rejection Feeling blamed “We often experience pain for some unaccountable reason, and no one can understand attitudes it! ... In Taiwanese culture, they don’t understand. They think … we did something in a towards their previous life. They are wrong!” (Pearl) impairment “I don’t think I have an impairment because of my wrongdoing in a previous life!”
refers to (Joyce) participants’ “I think my handicap is not due to what we did in a previous life or karma and
perceptions of reincarnation!” (Venice)
Taiwanese “[People said] you can’t be together with her or you will be infected or get an evil spirit. culture and the Or you will become a bad child in the next life. You will become like her!” (Pearl) kinds of “They think we are contagious!” (Pearl) attitudes
351 perpetuated by Feeling “If the impairment is to one’s foot as in my case, I am called a cripple this culture stigmatized in [Taiwanese]…People use Taiwanese [as opposed to Mandarin] more often and use it to
language mock you!” (Pearl)
“a cripple [Taiwanese, as opposed to Mandarin], which is offensive language” (Joyce)
“Handicap in Taiwanese sounds quite unpleasant to me!” (Yugo)
“We don’t have problems of body and mind!” “Why call us people with a disability]?!”
(Venice & Judy)
Feeling inferior to Useless “Useless! I just have one word to say: useless! This child is useless. How can she impose
others herself on society? Her parents have to take care of her for her whole life” (Pearl)
“the handicapped like us also give people a feeling: you are all out of order!” (Venice)
Shameful “My father absolutely did not dare to take me outside because he felt he would lose face”
(Pearl)
“they feel it is dishonorable and shameful so they don’t let disabled persons go outside
but keep them at home” (Joyce)
Cultural Growing Improved social “I definitely heard that [disabled people were useless] before! But that was an idea attitudes acceptance values towards before! Now I can’t say it doesn’t exist, but fewer and fewer people have such an idea towards their people with an now!” (Yugo) impairment impairment “This situation still occurs in my generation,…just not so much” (Yugo) refers to Higher education participants’ “Children nowadays tease you less, it’s different! It seems that sometimes parents teach
352 perceptions of standards among kids so they are less likely to laugh at others with a handicap” (Mary)
Taiwanese non-disabled “Before, it was unlike the terms used now to say you have difficulties, but people called culture and the people you a cripple directly” (Judy) kinds of attitudes perpetuated by this culture
Perceptions of the context in which participants were living their lives
Categories Subcategories Subcategories (2) Subcategories (3) Exemplifying data
(1)
Disability Better support Services for people “Now there is a benefit for those of us with difficulties. It’s the home care services. legislation with an impairment The person cleans up my place a bit and does things I am unable to do. So the refers to benefit is good!” (Mary) disability-related “When we have a specialized bus for people with mobility difficulties, we can go out policies in and have fun with others;…Could we do so before?” (Mary)
Taiwan “Now it’s better to have a [disability] organization which can help us to fight for
some benefits. Then, we handicapped are more able to enjoy our rights” (Mary)
Subsidies “They [her children] have been raised by the government all the way because we
have received a living assistance for low-income households!” (Mary)
“my husband was often sick before, if we did not have low-income family status,…
353 how could I afford it?” (Mary)
“to educate children until they were undergraduates was not easy! It needed the
help of social welfare. Many families [with people with an impairment] depended
on it for raising children!” (Judy)
Improved “I think it is improved quite a lot…at least I go out now, not like before when I
accessibility needed people to lift the wheelchair. Now I can find a ramp” (Yugo)
“Now environmental accessibility is beginning, like in the train station, there is free
access for wheelchairs!...and the police station, there is a ramp!...it improves
gradually! There were none before!” (Mary)
Disability Useless Limited support Unfair distribution of “I think these [resources] haven’t been nationwide!” (Yugo) legislation resources “other disabled students from other universities…said they had activities several refers to times a year. Compared with that, we didn’t have any!” (Joyce) disability-related policies in Lack of information “I didn’t know what resources were available until I started in this job [for people
Taiwan on available with a disability]!” (Joyce)
resources “We don’t know we have such benefits available, or when we do find out, it was
introduced a long time ago!” (Joyce)
Bureaucracy “The neighbourhood officer forgets there is a disabled individual such as me in his
neighbourhood” (Joyce)
“It is really very difficult to have a building tailor-made for us [participant’s
emphasis]!” (Pearl)
354 “I always think the Act is …manipulated by the upper level administrators…”
(Joyce)
“The staff told me: you don’t go there to have a look and see whether you like it
first. If I did so for you, isn’t it a waste of my time? I was very sad!” (Pearl)
“I think if possible, there should not be such inflexible regulations!” (Venice)
“I think the regulations are not user friendly enough! ...For example, I need an
electric wheelchair. The legislation says to buy one first and then to be reimbursed.
Then I ask you: where does our money come from?” (Pearl)
“in my opinion, it is just for government officials to say that they have a law to
protect themselves when they are people who understand the laws!” (Joyce)
Employment rights “if the employers don’t follow the quota, they would rather pay the penalties than not guaranteed hire us!” (Pearl)
“You fine him [an employer], and he would rather be fined than hire disabled
people” (Joyce)
“it seems the government doesn’t clamp down often!” (Yugo)
“Except for very serious penalties, he feels that the company can’t afford it so that
he would rather hire a disabled person, and then this is really guaranteed” (Joyce)
“I am low-cost labor!” (Mary)
“In regard to promotion …they thought because you were a handicapped person,
other people could do it but you couldn’t” (Venice)
“Although I have difficulties in some aspects, I work hard at the things I can do
[participant’s emphasis]! I work hard as usual, why am I treated worse
355 [participant’s emphasis]?” (Mary)
“Because of the same caring model! People lying, sitting, and standing, who benefits more? It must be those standing!” (Venice)
“the lotto is set up, and the government just hopes disabled people have one more choice to earn their livelihood. But I don’t know whether you find non-disabled people running the shops?” (Pearl)
356 Table 5: Depiction of the categories and categorical properties of participants’ management of their lives in Taiwan
Definition: referring to how a participant managed living a life with a physical impairment in Taiwan
Participants’ management of their lives in Taiwan
Categories Subcategories (1) Subcategories (2) Subcategories (3) Exemplifying data
Building the Protecting the Imagining the “I really want to go skiing but if I go, I could be very miserable. If it really fortress refers to impaired body worst case scenario gets frostbitten, I might need to have it amputated. I am scared. I don’t the means that know whether it would happen, but I imagine the worst case scenario” participants used to (Joyce) protect themselves “People like me, if we want to go outside with our wheelchairs, we worry from getting hurt about many problems we might face. For example, if our electric because of their wheelchairs broke down on the street, who would help us?” (Pearl) impairment
Finding more space “I was in the arts class not because I loved art. That was because the
for easier mobility number of people in the arts class was less than in the general ones. We
only had 30 people then. The same classroom with only 30 students had
more space so that it’s easier for me to move around” (Joyce)
Building the Protecting the fragile Inward Isolating oneself “I can’t face crowds, and I like to be alone” (Pearl) fortress refers to mind “I didn’t like to have contact with people too much and didn’t like to talk the means that to people” (Joyce) participants used to protect themselves Avoiding thinking “I deliberately don’t recall the past because the past was a very from getting hurt of the hurt agonizing time for me…I try to forget it all the time!” (Pearl)
357 because of their “Compared with everyone else, I just have some problem. But there is impairment no really big difference so that I have to remind myself all the time, and
to feel that I am a disabled person. So, I think I avoid it and ignore it on
purpose…” (Joyce)
Comforting oneself “I tell myself all the time: because you are not me….I am the person
experiencing it, and no one can live the same life as me. This is my
experience of life, and gradually I can comfort myself naturally” (Pearl)
“Whether others like me is not something I can control. … So whether
you like me or not is up to you!” (Joyce)
Suppressing one’s “When I am outside, I have to control myself not to say unnecessary
feelings words. …Although what he said is very annoying, no, I still have to
suppress myself to let him finish talking” (Joyce)
“I think I shouldn’t let myself have too many expectations and hopes, so
when I end up with nothing, I won’t feel disappointed and too hurt”
(Joyce)
“If I have any problem, you have never heard me call you and tell you
what happened to me because I have learned to keep things to myself,
to keep to myself and not to talk about it” (Pearl)
Outward Not trusting people “my personality is quite strange, even on the Internet I am very cold,
not enthusiastic with other people... I’m defensive and don’t trust
358 people” (Joyce)
“Someone told me if people want to gain my trust, it can’t be achieved in
one or two years!” (Pearl)
Hiding the real self “I prefer to go to work just as an ordinary thing, and I don’t want to show
my weakness. For example, if I want to cry today, I won’t cry in front of
you” (Pearl)
“I act timidly on the outside, not full of aggression” (Joyce)
Building the Letting down the Covering up fear “I braced myself to look for a job alone, and no one came with me, no fortress refers to drawbridge to the one!” (Pearl) the means that fortress “Speaking of the home visit … in the beginning I was very scared and I participants used to didn’t know what to do… I hesitated at first so that I couldn’t step out by protect themselves myself. Because of the trigger point, I suddenly leaped out and I could from getting hurt do that by myself!” (Joyce) because of their impairment Fitting in “I didn’t want to change in the beginning, but because of the need to
survive in the working environment, I had no choice but to do so”
(Joyce)
“Maybe you would think telling a lie is very bad before, but after working
you would find you cannot help telling a lie!….That means you might
need to make some changes and then you can adapt yourself to this
society” (Joyce)
359
Participants’ management of their lives in Taiwan
Categories Subcategories Subcategories (2) Subcategories (3) Exemplifying data
(1)
Fostering Seeking out Overcoming “For difficulties, you should overcome them [participant’s emphasis]! To support refers to support difficulties by do so by oneself!” (Mary) the strategies that oneself “we [students with an impairment] raised funds for it! Such as the money from participants used the school carnival…or we paid for it” (Yugo) to gain support in “I put the bowls on this chair and then pushed it out. After I had cleaned them, the context in I pushed the chair in. It was so convenient. And I had my own way!” (Judy) which they lived their lives Sensitive “I am quite good at observing people’s expressions… At first, I chat with them.
observation During our talk, I also observe what kinds of people they are” (Yugo)
Asking for help “at that time I started to open my mind! And I started to ask for my
schoolmates’ help quite often!” (Yugo)
Fighting for “I have quite a lot of conflicts with my family!...Sometimes I argue with them
support [for the support he wanted]!” (Yugo)
“using a protest so that the voice of the disadvantaged can be heard!” (Mary)
“My experience is I think that society indeed discriminates against us to some
extent. And then we strive for our own rights by social protests” (Yugo)
360 Compromising to “to do things quickly…to have less money, we still have to work …It’s better to
retain support have a job than nothing at all!” (Mary)
Fostering Maintaining Inward Being optimistic “I am quite optimistic so my relations with others are really not bad!” (Yugo) support refers to harmony in “I am more optimistic…and easier to get along with” (Mary) the strategies that relationships participants used Reflective insight “I think my parents are old after all. To change their ideas, they’ve been imbued to gain support in so long, I think it’s very hard to change their ideas!” (Yugo) the context in “People have already given you the opportunity, what more do you which they lived want [participant’s emphasis]!” (Mary) their lives
Outward Easy to get along “When I go out, I smile and then when I see people, I say hello to them” (Yugo)
with “if they have any complaints about me, I hope they can tell me directly, it’s ok”
(Yugo)
Not bothering “asking for help, we need to say it early because we can’t ask for it when people
others too much are busy at work…so that they don’t feel that the request is troublesome” (Mary)
“If it’s not okay for them, it’s fine and then I won’t go out” (Yugo)
“Going by car takes up other people’s time, driving me to and fro … so we
shouldn’t bother them so much” (Hilda)
Reciprocity “they help by running errands for me and lifting me in and out of the car. And I
help them with their assignments” (Yugo)
361 Fostering Ensuring Making sure one Learning to take “From my standpoint, the most important thing is that I am able to take care of support refers to sustainability of can support oneself care of self myself! [Therefore] I trained myself, after a shower, I had to wash clothes…I the strategies that support independently learned to cook, and did it well” (Venice) participants used “To prove I could make it! I could take a train by myself!” (Joyce) to gain support in “I would think about what I should do if I went there by myself” (Yugo) the context in which they lived Careful with money “we economize on our expenditures” (Hilda) their lives “I must save some money…otherwise, if I need a large sum of money some
other day, where will it come from?” (Mary)
“I am not interested in keeping a pet!...because a pet…I don’t know…Maybe I
need to spend on foodstuff or perhaps it needs injections….I am very frugal!”
(Yugo)
“I think wearing…wearing…good quality clothes but not expensive, the high
fashion of the common people is fine. The money I save can be used to plan my
future!” (Joyce)
Not getting married If you can’t take care of yourself first but you need to take care of your wife and
children, won’t you be tired? ... In that case, it would be best to keep living
alone” (Venice)
Investing in “even if I try hard to get a girl friend, it will be a fruitless investment. So it would
beneficial be better to invest in more beneficial relationships with other people” (Yugo)
relationships “the handicapped do not necessarily want to make friends with the
362 handicapped. To make friends with a non-disabled person is very nice, and has
lots of convenience!” (Judy)
“the handicapped marry the handicapped, and they accompany each other”
(Mary)
“Because I had difficulties, he had none so that we could support each other!”
(Judy)
Participants’ management of their lives in Taiwan
Categories Subcategories Exemplifying data
Fostering the mind refers to Self-reflection on the “Since we have been handicapped and our feet have problems, we have more opportunities to think the strategies that a participant meaning of having a more and then do more instead!” (Venice) used to head for the handicap “A handicap is not necessarily a defect in life [participant’s emphasis]…a handicap for me… just development of his spirit means my feet are unable to stand and allow my hands to take something at a high level” (Venice)
“Because of having a handicap, we have difficulties! I think that’s not bad! At least with [unimpaired]
feet , …I might go out everywhere and then show off!...I might do…something bad…And then today I
know my ability is worse than others! …So I just do things I am equal to…So I would say: if my feet were
good today, I might have been in jail for a long time!” (Venice)
363 Fostering the mind refers to Breaking through the “Although I have difficulties in my feet, my hands are ok and my thinking model is also very good and the strategies that a participant handicap normal! And then when I do anything, I will figure it out to break through!” (Venice) used to head for the development of the spirit
364 Table 6: Depiction of the categories and categorical properties of the outcome of participants’ management of their lives in Taiwan
Definition: referring to the outcome of participants management of their lives in Taiwan
Outcome of participants’ management of their lives in Taiwan
Categories Subcategories (1) Subcategories (2) Exemplifying data
Continuing Self-imposed social Alone “since I moved in, I have refused to have any visitors!” (Pearl) to build the isolation fortress with family “I really feel I am very very lucky [to have such a family]. Although I am very lucky [to have such a
family], I am still very wilful [to them]. I won’t be very polite or show good manners to my family”
(Joyce)
Hurt resulting from letting “when they saw you, they just shook their head and said: if we need you, we will call you” (Pearl)
down the drawbridge to the “because I really don’t like telling a lie, I would find it quite…quite difficult to adapt” (Joyce)
fortress
Continuing A contented social “I am very easily contented!” (Judy)
to foster networker
support
An active social networker “to make friends can broaden my view and I can contact friends with different personalities. Through
the interaction, it not only lets me learn others’ strengths but also increases my experiences in
interpersonal interactions” (Yugo)
An anxious social “If no one is here, what should I do [sounding anxious]!?” (Mary)
networker
365 A hapless social networker “To live everyday is to wait for death. If I had died at the time when I got hurt, it wouldn’t cost so
much money!” (Hilda)
Continuing Superior mind “I am God” (Venice) to foster the mind
366