University of Ghana http://ugspace.ug.edu.gh UNIVERSITY OF GHANA COLLEGE OF HUMANITIES DISABILITY AND STIGMA: INTERROGATING MIDDLE-CLASS EXPERIENCES IN THE SOCIAL SPACES OF GHANA JOSEPH OCRAN DEPARTMENT OF SOCIOLOGY JULY 2017 University of Ghana http://ugspace.ug.edu.gh UNIVERSITY OF GHANA COLLEGE OF HUMANITIES DISABILITY AND STIGMA: INTERROGATING MIDDLE-CLASS EXPERIENCES IN THE SOCIAL SPACES OF GHANA JOSEPH OCRAN (10289308) A THESIS SUBMITTED TO THE SCHOOL OF GRADUATE STUDIES IN PARTIAL FULFILMENT OF THE AWARD OF DEGREE OF DOCTOR OF PHILOSOPHY IN SOCIOLOGY DEPARTMENT OF SOCIOLOGY JULY 2017 University of Ghana http://ugspace.ug.edu.gh DEDICATION I dedicate this work to my father, Mr Stephen Kofi Ocran, my mother, Mrs Hannah Aba Ocran and to my twin sister whose stigmatising experiences inspired this study. ii University of Ghana http://ugspace.ug.edu.gh ACKNOWLEDGEMENTS I am very grateful to The Lord Most High for bringing me this far. I would like to thank all those who assisted me in various ways throughout my studies. My sincere thanks go to my supervisors, Prof. Dan-Bright S. Dzorgbo, Prof. Alexander Kwesi Kassah and Prof. Akosua K. Darkwah for their encouragement, supervision and support. I extend my profound gratitude towards the University of Ghana-Carnegie Next Generation of Academics in Africa (UG-Carnegie NGAA project) for funding my studies. I thank and appreciate the staff and faculty of the Department of Sociology, University of Ghana, Legon and the Department of Social Education and Arctic Centre for Welfare and Disability Research, UiT/Norges Arktiske Universititet, Harstad Campus, Norway, especially Prof. Alexander Kwesi Kassah, for accommodating me as a visiting PhD student for a semester. My heartfelt appreciation also goes to my family – my parents, Stephen and Hannah, my sisters Becky and Josephine and to my uncle, Mr Kwesi Mensah Sagoe. I appreciate your assistance, encouragement, support and everything you did for me. You have really been there for me and words will never be enough to show my gratitude to you. I cannot leave out my father-in-law and my brothers-in-law. You always encouraged me and I am very grateful. Special thanks go to my mother-in-law, Mama Grace. I cannot thank you enough for all you have done. I thank all my mates, especially Dr Kwabena Boateng and Dr Joana Kwabena-Adade. To all my participants and the contact persons through whom I met my participants, I say a big thank you. You really made this study possible. My final thanks go to my wife, Suzanne. I journeyed through my studies with you by my side. Thank you for your love. I am forever grateful. May God bless you all! iii University of Ghana http://ugspace.ug.edu.gh ABSTRACT Persons with disability continue to experience stigma which often leads to marginalisation and discrimination, despite the introduction of several legal and policy interventions intended to correct that. These stigmatising experiences have been documented and are well known. However, the known experiences are often from persons who are economically and socially dependent on others for their sustenance. This sometimes makes it seem that persons with disability are an oppressed aggregate of people who all need society‘s assistance to enable them escape their vulnerabilities that the stigma of disability produces. In this study, I sought to disaggregate persons with disabilities on the basis of social class by examining the stigmatising experiences of middle-class persons with disability who are largely absent from the literature in developing countries such as Ghana. Using the hermeneutic phenomenological approach, I sought to find out how middle-class persons with disabilities understand and explain the stigma of disability; what restricts them in the performance of their social roles and activities and how they manage their identities in the presence of the stigma. I conducted 16 in-depth interviews with middle-class persons with disabilities, made up of 11 men and 5 women. I found out that there are hierarchies within the middle-class persons with disabilities. These hierarchies relate to the time of acquisition of the impairment, the family into which one was born and the support received from them as well as the situational factors of interaction. Though they are all middle-class, the resources available to some in their resistance to stigma are not available to others. I also found out that under the influence of the usual stereotypes of disability, middle-class persons with disability are often assumed to be physically, intellectually and financially incompetent. Also, some social institutions that admit middle-class persons with disabilities also stigmatise them because of their iv University of Ghana http://ugspace.ug.edu.gh disabilities. Middle-class persons with disabilities are admitted into such institutions but are not given complete access to the institutions‘ opportunities and resources. It also emerged that middle-class persons with disabilities utilise various processes of rationalisation and identity management to reconstruct positive identities of themselves over disabilities‘ hurtful identities, as a way of avoiding the negativities that the stigma of disability creates. I recommend that social systems of organisations and institutions within which persons with disabilities may be found are studied in order that institutional arrangements that support and/or oppose the integration of persons with disabilities will be known. The opposing structures can be dismantled and the supporting structures can be strengthened and replicated elsewhere. Since persons with disabilities are not an aggregate, I recommend that interventions for their inclusion are amended to reflect the nuances of the many social identities that are created by situational and personal factors. A one size fits all approach will not be very useful. v University of Ghana http://ugspace.ug.edu.gh TABLE OF CONTENTS DECLARATION i DEDICATION ii ACKNOWLEDGEMENTS iii ABSTRACT iv TABLE OF CONTENTS vi LIST OF FIGURES xii LIST OF TABLES xiii LIST OF ABBREVIATIONS xiv CHAPTER ONE DISABILITY AND STIGMA AMONG THE MIDDLE-CLASS Introduction 1 Contextualising the Study 1 The ‗Daanaa and Greenstreet‘ Experiences 3 Statement of the Problem 6 Research Questions 10 Significance of the Study 10 Definition of ‗Class‘ in the Study 11 The Use of ‗Persons with Disability‘ as the Descriptive Label in this Study 15 Organisation of Chapters 16 CHAPTER TWO THEORETICAL RESOURCES Introduction 18 Models of disability 18 Individual Model of Disability 19 vi University of Ghana http://ugspace.ug.edu.gh Social Model of Disability 21 The Social Relational Model and the Psycho-emotional Dimension of Disability 24 Psycho-emotional Dimensions of disability 27 Minority Model of Disability 31 Cultural Model of Disability 32 World Health Organization International Classification of Functioning, Disability and Health Framework 32 Stigmatisation: Perspectives and Issues 34 Dimensions of Stigma 37 Stigma and Social Interaction 39 Stigma, Class and Social Identities 41 Culture, Disability and Stigma 47 The Social Process of Stigmatisation 48 Summary 54 CHAPTER THREE DISABILITY IN GHANA Introduction 55 Distribution of Disability in Ghana 55 The ‗Meaning‘ of Disability in Ghana 57 The Cultural and Religious Context of Disability in Ghana 59 The Social Context of Disability in Ghana 65 Education 65 Health 69 Physical Environment and Transportation 70 The Economic Context of Disability in Ghana 71 The Gender Relations Context of Disability in Ghana 75 vii University of Ghana http://ugspace.ug.edu.gh The Legal and Policy Environment of Disability in Ghana 77 Progressive Handling of Disability in Ghana 83 Summary 84 CHAPTER FOUR RESEARCH METHODS Introduction 86 Rationale for the use of a Qualitative Research Approach 86 Research design 88 Rational for the Choice of Hermeneutic Phenomenology 92 Study Population, Sample Size and Sampling Technique 94 Field Entry, Recruitment Strategies and Profiles of Research Participants 98 Data Collection Process 98 Ethical Issues in the Study 103 Data Storage and Management 106 Role of the Researcher: Being Reflexive 107 Method and Procedure of Data Analysis 109 Quality Control and Assurance Measures 113 Autobiographical Reflection 114 CHAPTER FIVE LIFE HISTORIES OF (DIS)ABILITY Introduction 116 Middle-Class and Childhood Acquisition of Disability (M/CA – Category) 117 Jeanette 117 Matthew 119 Martha 121 viii University of Ghana http://ugspace.ug.edu.gh Gabriel 122 Ezekiel 124 Daniel 126 Middle-Class and Adulthood Acquisition of Disability (M/AA Category) 127 Maame 127 Yakubu 128 George 129 James 130 Lower-Class and Family Support (L/FS Category) 131 Jacob 131 Sam 132 Akosua 134 Tony 135 Lower-Class and Lack of Family Support (L/LFS - Category) 136 Agnes 136 Kofi 138 Class and Disability Intersections 139 Situating Social Class in Disability Experiences 141 Dealing with ‗the Gap‘ 147 Summary 149 CHAPTER SIX ASCRIPTIONS OF INCOMPETENCE Introduction 151 Disqualification from Society 152 Ascription of Physical Incompetence 159 ix University of Ghana http://ugspace.ug.edu.gh Ascription of Intellectual Incompetence 167 Ascription of Financial Incompetence 175 Ascription of Social Incompetence 179 Disabled and Disadvantaged by Society 183 Contextualising Ascriptions of Incompetence to Middle-Class Persons with Disabilities 185 Summary 188 CHAPTER SEVEN CONTRADICTORY POSITIONS OF ACCEPTANCE AND REJECTION Introduction 190 Educational Institutions 191 Places of Work 201 Churches 210 The Service Industry 215 Contextualising Acceptance and Rejection of Middle-Class Persons with Disabilities 222 Summary 227 CHAPTER EIGHT STIGMA AND DISABILITY IDENTITY MANAGEMENT Introduction 229 Denial of Disability by ‗Self‘ 230 Denial of Disability by Others 236 Abilities as Basis for Rejecting ‗Disability‘ as a Label 244 Elevation of Reputation by Comparison 252 Tension and Impression Management 257 Avoidance of Mixed Contacts 258 x University of Ghana http://ugspace.ug.edu.gh Embracement 263 Confrontation and Resistance 266 Deflection to Religion 268 Social Class as the Determinant 272 Summary 273 CHAPTER NINE SUMMARY, CONCLUSION AND RECOMMENDATIONS Introduction 275 Key Research Findings 276 I. Intersection of Disability and Middle-Class Position 277 II. Ascriptions of Incompetence – Prevalence of Disability Stereotypes 279 III. Simultaneous Institutional Acceptance and Rejection – Contradictions of Stigma 281 IV. Middle-class Persons with Disabilities‘ Identity Management Approaches 284 Conclusion 286 Recommendations for Policy 289 Future Research 290 REFERENCES 291 APPENDIX I : INTERVIEW GUIDE 309 APPENDIX II: ETHICAL CLEARANCE 314 xi University of Ghana http://ugspace.ug.edu.gh LIST OF FIGURES Figure 1: Data Analysis Process 111 xii University of Ghana http://ugspace.ug.edu.gh LIST OF TABLES Table 1: Regional Distribution of Persons with Disabilities in Ghana 56 Table 2: Profiles of Participants for the Study 100 xiii University of Ghana http://ugspace.ug.edu.gh LIST OF ABBREVIATIONS BECE Basic Education Certificate Examination CPP Convention People‘s Party CPRD Convention on the Rights of Persons with Disabilities CSM Cerebrospinal meningitis DACF District Assembly Common Fund DCE District Chief Executive DVLA Driver and Vehicle Licensing Authority ECH Ethics Committee for Humanities, University of Ghana, Legon GAB Ghana Association of the Blind GCSE O‘ Level General Certificate of Secondary Education Ordinary Level GFD Ghana Federation of the Disabled GNAD Ghana National Association of the Deaf GSPD Ghana Society of the Physically Disabled GSS Ghana Statistical Service HRW Human Rights Watch ICF International Classification of Functioning, Disability and Health IPA Interpretative Phenomenological Analysis IT Information Technology L/FS Lower-class and Family Support L/LFS Lower-class and Lack of Family Support M/AA Middle-class and Adulthood Acquisition of Disability M/CA Middle-class and Childhood Acquisition of Disability MMDA Metropolitan/Municipal/District Assemblies NCPD National Council on Persons with Disability NDC National Democratic Congress NGO Non-Governmental Organisation NHIS National Health Insurance Scheme NIMBY Not In My Back Yard OSSN Office of Students with Special Needs, University of Ghana, Legon SPED Special Education Division, Ministry of Education SSSCE Senior Secondary School Certificate Examination xiv University of Ghana http://ugspace.ug.edu.gh UN The United Nations UNDP United Nations Development Program UPIAS Union of the Physically Impaired Against Segregation WHO World Health Organization xv University of Ghana http://ugspace.ug.edu.gh CHAPTER ONE DISABILITY AND STIGMA AMONG THE MIDDLE-CLASS Introduction Disability and the life experiences of persons with disabilities have over the years earned a lot of attention from academics (Hughes, 2013; Naami, 2015; Powers et al, 2002; Rich, 2014). However, the literature on disability, especially in the developing world is usually heavy on the social situation of persons with visual impairment and the physically challenged and also on inclusive education of children with special needs. This seemingly lopsided focus on these groups of persons with disabilities tend to reinforce the negative stereotypes and prejudice that persons with disabilities live with, specifically that they are mostly economically challenged and socially excluded. These representations often draw uneven attention to some persons with disabilities‘ economic challenges that put some of them on the street to solicit for alms. Such an uneven understanding of the experiences of persons with disabilities makes it difficult for disability issues to be properly understood and managed. Contextualising the Study It is widely known that disability and the social relations constructed around it are steeped in a stigmatising, oppressive and discriminatory social, economic and political milieu (Edwards & Imrie, 2003; Meekosha, Shuttleworth & Soldatic, 2013). Persons with disabilities are sometimes victims of violence and social injustice. In recent times, however, several legal provisions, policy and welfare interventions have been put in place to protect persons with disabilities from the stigma and the ensuing discrimination that is often entrenched in societies. These provisions have been made at both global and 1 University of Ghana http://ugspace.ug.edu.gh national levels (Anthony, 2011; Goodley, 2017). Global level interventions have been spearheaded by the United Nations (UN) and include the UN Convention on the Rights of Persons with Disabilities and the declaration of 1983-1992 as the Decade of Disabled Persons (Barnes, Mercer & Shakespeare, 1999). These provisions and conventions have been introduced to address the stigmatisation, discrimination and exclusion that persons with disabilities experience in the form of limited opportunities in education, employment and the general abuse of their human rights. Despite these legal and social interventions, there are varying socio-cultural systems and normative patterns that govern the social relations within which persons with disabilities are found. It is within these social relations that the social impact of the disability is felt and experienced by persons with disabilities. These experiences include the stigma and the adjustments that an individual living with a disability goes through in relating to others, particularly, non-disabled people. These experiences lead to the adoption and performance of coping strategies by persons with disabilities, as a means of responding to the social impact of disability and its effect on the individual who has the disability. The experiences of persons with disabilities are, however, contingent on several factors, one of the most salient being how the disability is conceptualised and explained within the context of the social group or community. How the group or society defines the disabling attribute determines how they react to it and ultimately, how they behave towards the person who carries that attribute. The differences in the experiences of persons with disabilities depend on the frame of reference within which the disability is construed. It is these ascriptions that emerge from the frames of reference that end up shaping how the society responds to the attributes of people. With respect to disability, the society‘s 2 University of Ghana http://ugspace.ug.edu.gh response to the disabling attribute determines the experiences of persons with disabilities in that particular society. One of the factors that motivated my interest in this study is the fact that my twin sister was born with cleft palate, a congenital disorder that distorts one‘s speech. Her speech is therefore overly nasal. I grew up with her and witnessed some of the challenges she seemed to have. For me, I did not fully know nor understand what her challenges were. It was the interview I had with her in the course of this study that made me aware that she had lived through stigmatising experiences. In one way, I was surprised that I never knew the full extent of the stigmatising experiences she had had as a result of her partial speech impairment. In another breath, it made me realise how easy it is for stigmatising experiences of persons with disabilities to be ignored or taken for granted. My twin‘s experiences are, however, not unique. Persons with disabilities encounter various forms of stigma in their lives in the different social spaces they school, live, work and worship. To further place this study in the sociological perspective, the stigmatising experiences of two prominent middle-class Ghanaian persons with disabilities, Dr Henry Seidu Daanaa and Ivor Kobina Greenstreet, are presented and used to justify the focus of this research on middle-class persons with disabilities in Ghana. The ‘Daanaa and Greenstreet’ Experiences Dr Henry Seidu Daanaa is a visually impaired lawyer who holds a Master‘s and PhD degree in law. In January 2013, he was nominated by the President of Ghana to be appointed Minster for Chieftaincy and Traditional Affairs. A number of chiefs openly decried his nomination and subsequent appointment because they claimed that chiefs were barred by their traditional beliefs and customary obligations from interacting directly with 3 University of Ghana http://ugspace.ug.edu.gh Dr Daanaa and any other person with disability. This was despite the fact that Dr Daanaa had in over two decades worked at several Regional Houses of Chiefs in Ghana and risen to become the National Director of Research at the Ministry of Culture and Chieftaincy, the same ministry that had been designated under the current name of Ministry for Chieftaincy and Traditional Affairs. The President of the National House of Chiefs, Naa Prof. John Nabila, came out to condemn the protestations of the chiefs and rather lent his support to the nomination and appointment of Dr Daanaa to the position. He commended the president for considering the competence of Dr Daanaa in his nomination. Some disability and human rights activists were full of praise for the president for nominating a visually impaired individual to that position. Ivor Greenstreet is a lawyer, owner of a publishing company, former General Secretary of the Convention People‘s Party (CPP) and the party‘s presidential candidate in the 2016 general elections in Ghana. He is physically challenged and uses a wheelchair. At the 2014 National Delegates‘ Congress of the then governing National Democratic Congress (NDC), Ivor Greenstreet represented the CPP, as representatives of political parties attend each other‘s congresses. When he was called to give his solidarity message on behalf of the CPP, Greenstreet used the opportunity to attack the governing party and the government‘s governance style, management of the energy crisis and failure to rid the government of perceived corruption. His comments incensed the rank and file of the NDC who saw his comments as offensive and inappropriate given that solidarity messages are usually meant to be goodwill statements. Some officers of the NDC and government castigated him for this. One of the comments which drew a lot of media and public attention came from Samuel George Nettey, a presidential staffer and government communicator who suggested in a social media posting that ―Ivor Greenstreet apparently 4 University of Ghana http://ugspace.ug.edu.gh needs elevation to see the ‗Better Ghana Agenda‘.‖ The suggestion that Greenstreet needed ‗elevation‘ to see the works of the government was met with severe criticism of Samuel Nettey. He was accused of referring to Greenstreet‘s paraplegia. Samuel Nettey denied referencing Greenstreet‘s disability and apologised for any discomfort his comments had caused but this did not, however, go well with disability and human rights activists who also attacked Nettey and the government for their failure to respect and protect the rights of persons with disabilities in Ghana. The experiences of these two individuals are known because they were reported widely in the media and they show that persons with disabilities, regardless of their social class positions, experience various forms of stigma. The experiences of the two middle-class individuals are, however, not enough to tell a more nuanced story about the experiences of middle-class persons with disabilities in Ghana even though they point to the fact that there are experiences that may not be easily known. As a sociological study, I sought to examine the stigmatising experiences and identity management strategies of middle-class persons with disabilities in Ghana. These, added to the experiences of persons with disabilities who are economically challenged, socially oppressed and marginalised are ample proof that persons with disabilities go through stigma induced discriminations on a daily basis. The literature on disability in Ghana is, however, largely a representation of persons with disabilities as they are seen in the streets and as beggars (Agbenyega, 2003; Baffoe, 2013; Kassah, 2008; Kassah, Kassah & Agbota, 2014; Naami, 2014, 2015; Reynolds, 2010). Nevertheless, there are other persons with disabilities who are often overlooked in the disability discourse. These are persons with disabilities who are well educated, gainfully employed with high incomes, with preference for exclusive materials and services and 5 University of Ghana http://ugspace.ug.edu.gh who enjoy some of the privileges, power and influence that some non-disabled people aspire to have (Naami, 2015; Reynolds, 2010). These middle-class persons with disabilities have their own unique experiences which are different from persons with disabilities who are economically challenged and socially marginalised, some of whom end up on the streets as beggars. Some of the difficulties that such persons with disabilities who may be described as middle-class because of their socio-economic status face include negative perceptions about their capabilities, limited structural and social support, pay discrimination at work, verbal abuse, exclusion and unavailability of required materials for effective work (Naami, 2015). All of these invariably add to the stigma experienced by middle-class persons with disabilities. Statement of the problem Thomas (1999, p. 60) defines disability as ―a form of social oppression involving the social imposition of restrictions of activity on people with impairments and the socially engendered undermining of their psycho-emotional wellbeing.‖ This definition of disability as a social response means that disability is seen as the imposition of marginalisation, isolation and exclusion of the individual with impairment. Social, cultural and religious beliefs and value systems act on disability and social constructs and personal traits such as type of impairment, gender, class, physical location and age to define the context of an individual‘s experience of stigma (Scambler, 2006). Kleinman and Hall- Clifford (2009) and Shaw, Chan and McMahon (2012) argue that disability stigma has often been studied from the individual and medical perspectives with emphasis on how stigma is internalised, how it shapes individual behaviour and how the individual who has acquired the impairment is required to adjust himself or herself in order to fit within the society. As a sociological study, the focus of this study is the experiences of stigmatisation 6 University of Ghana http://ugspace.ug.edu.gh in the various social spaces that middle-class persons with disabilities may be found and the examination of how social life and relationships are altered by these stigmatising experiences. The literature on disability often characterise persons with disabilities as people who have poor health, low education attainment, fewer economic opportunities and higher rates of poverty, especially for those in the developing world (Hughes 2013; Kassah, 1998; Mitra, Posarac & Vick 2013; Naami & Mikey-Iddrisu, 2013). These depictions direct disability policy and research in the developing world, with a dominant focus on the experiences of stigma, exclusion and marginalisation of persons with disabilities, and less on the nuances that come with their occupation of different social statuses and presence in different social spaces, factors which invariably give rise to varied experiences. The discussion of stigma of persons with disabilities is also heavily influenced by the high levels of poverty and oppression often associated with persons with disabilities (Baffoe 2013; Naami & Mikey- Iddrisu, 2013; Rich 2014). The experiences of stigma by persons with disabilities are, however, not uniform. Experiences depend on several indices such as class, type of impairment, gender, race, ethnicity, age and physical location. The gendered dimension of disability has been well theorised (Addlakha 2008; Gerschick 2000; Naami & Hayashi, 2011; Naami, 2015; Nepveux, 2006; Rich 2014) but the dynamics of the class dimensions of stigmatising experiences have not been analysed thoroughly enough (Shaw et al, 2012). A substantial amount of work exists about the experiences of economically challenged persons with disabilities (Abidi & Sharma, 2014; Hughes, 2013; Kassah, 2008; Mitra et al, 2012; Naami & Mikey-Iddrisu, 2013; Yeo & Moore, 2003), but little research focusses on how class combines with the other personal and social indices such as age, gender, type of 7 University of Ghana http://ugspace.ug.edu.gh disability and even the time at which the impairment was acquired, all factors that converge to define the dynamics of the stigma experienced by middle-class persons with disabilities. The middle-class position does, however, not preclude middle-class persons with disabilities from stigmatising experiences. For instance, in Ghana and even beyond, there are several middle-class persons with disabilities who do not fit the dominant representations of the politically, economically, socially marginalised persons with disabilities that are often presented in the literature. There are several business managers, sportsmen and women, academics, entrepreneurs and career professionals who have different forms of disability. They are found in different spaces and spheres of society and that gives rise to different kinds of disability and stigma experiences. Their experiences are created by the convergence of social class and the disability identities. Different class identities thus create hierarchies among persons with disabilities with the class identity being influential in the individual‘s disability experiences. The multiple identities and varying social contexts influence these interactions (Shaw et al, 2012; Vernon, 1999). The stigma, prejudices and discrimination that most persons with disabilities experience usually ensure that they remain in the lower socio-economic group but middle-class persons with disabilities experience different and fewer hardships when they are compared to persons with disabilities in the lower social class (Vernon, 1999). This is the case because the combined effects of having a disability and being lower-class, which is, having more than one stigmatising condition, leads to higher levels of stigma when their experiences are compared with others who have only their disability as their stigmatising condition. It is, however, also known that people who are initially marginalised but are empowered are able to stand up to the abuses and oppression that society imposes on them by insisting 8 University of Ghana http://ugspace.ug.edu.gh on their rights and confronting people who attempt abusing and denigrating them (Naami & Hayashi, 2011; Naami & Mikey-Iddrisu, 2013). This is because behaviours or conditions that are stigmatising in middle-class social relations and communities may not exist in other social class contexts since the construction of ‗normality‘, ‗disability‘ and ‗deviance‘ are not universal but context specific (Francis, 2012). The social class position of an individual usually mediates the influences of historical and cultural factors that give rise to stigma. Middle-class persons with disabilities are in some situations able to negotiate or even resist the stigma associations in ways that lower-class persons with disabilities are unable to do (Kusow, 2004). What is not known, however, is how different the stigmatising experiences of the middle-class persons with disabilities are from the experiences of the majority of persons with disabilities who appear to be from lower-class in society, how middle-class persons understand and explain their stigmatising experiences as well as how they cope and manage themselves when they confront the stigmatising experiences. Existence in different socio-economic groups leads to distinct and unique experiences for persons with disabilities. For those in the higher socio-economic groups, their social class position confers on them several advantages and at the same time, their disability exposes them to several disadvantages. However, as the privileges associated with class increases, the disadvantages that come with the disability tend to decrease (Vernon 1999). The lived experiences of the middle-class persons with disabilities are, however, not well known and properly understood. The nuances of different social statuses, especially class, gender, age, and middle-class persons with disabilities‘ existence in different spaces account for varying experiences of stigma but these have not been documented extensively. Though Powers et al (2002) and McCarthy (2003) have recognised and addressed this limitation, 9 University of Ghana http://ugspace.ug.edu.gh their studies were based on individuals in the developed world. There is, however, not much beyond that especially in the developing world. This study, therefore, is an attempt at contributing to the literature that corrects the imbalance and dearth of focus on the interaction between social class and disability stigma experiences. I am seeking to bridge this gap by focussing on middle-class persons with disabilities. This is an interrogation of the varied contexts of persons with disabilities‘ social, economic and political life experiences. Research Questions In furtherance of these reasons, the research questions that guided the study in the examination of how middle-class persons with disabilities experience stigma in their various social spaces are: 1. How do middle-class persons with disabilities understand and explain their stigmatising experiences? 2. What are the restrictions on activities and social roles of middle-class persons with disabilities in the home, work, school and religious spaces? 3. How do middle-class persons with disabilities manage their personal and social identities against stigma? Significance of the Study This study explores the lived experiences of stigma of middle-class persons with disabilities and the meanings they ascribe to these experiences. These experiences are influenced by consciousness, language and idiosyncrasies and presuppositions (Adams & van Manen, 2008; Creswell, 2013). I have documented the lives and experiences as they 10 University of Ghana http://ugspace.ug.edu.gh occur across gender, class, age, religious and spatial differences. The social experiences of persons with disabilities are dissimilar to each other on the basis of these variables and this study has offered the opportunity for these experiences to be looked at in juxtaposition. The ‗privileged‘ middle-class persons with disabilities do not always endure the kinds of pejorative labels and behaviour that ‗other‘ persons with disabilities have to deal with but they have a dual experience of the threat of encountering pejorative behaviour and stereotyping on one hand, and higher social class position on the other. This gives rise to varying experiences of stigma, social restrictions, exclusion and marginalisation as well as varying identity management responses. It is important, therefore, that these experiences are documented, analysed and juxtaposed to examine nuances, variations and consistencies with the dominant representations and understandings of disability and persons with disabilities in the literature. The study also looks at how policy, welfare and social interventions also shape the lived experiences of the middle-class persons with disabilities. An understanding of the nuanced experiences of stigma will lead to better management of disability issues in Ghana and beyond. Definition of ‘Class’ in the Study The concept of ‗class‘ remains one of the most contested topics in sociology. This emanates from the fact that ‗class‘ is subject to different interpretations, with each paradigm focussing on particular aspects of social organisation. The indices along which class may be defined may be subjective or objective (Crompton, 2006; Hoult, 1974, as cited in Vitt, 2007). The subjective definition involves individuals‘ own evaluation of themselves in relation to others in the society, as they determine whether their social position is higher, lower or similar to others. In the objective definition, an objective criteria founded on verifiable indices such as income, education and occupation are 11 University of Ghana http://ugspace.ug.edu.gh considered. Crompton (2006) identifies what she believes are three dimensions of class, as a construct. These include the economic dimension which considers issues surrounding material inequalities, the cultural dimension that focusses on social behaviour, lifestyles and the social hierarchies it generates, and the political dimension that is primed on the roles of different classes in political, economic and social change. The existence of different classes is indicative of social inequalities created by differential access to resources and opportunities. In accounting for this social differentiation, Vitt (2007, p. 533) defines class as ―a stratification system that divides a society into a hierarchy of social positions.‖ She goes on to explain that class also refers to a position within the social stratification system such that there would be classes such as the lower class, working class, middle class and the upper class. There are different configurations of the class system. As a result, this list given by Vitt may vary from society to society and from social theorist to social theorist. Two of the most prominent and influential conceptualisations of class in sociology come from Karl Marx and Max Weber. Karl Marx argued that at every point in time within every society, there are two groups or classes of people. People in one of the groups own the means of production in the society. The means of production include resources and assets such as capital, land, factories and equipment used in the production of goods and services. The other group is the non-owners whose labour is needed to sustain the production process (Bruce & Yearly, 2006; Coser, 1977; Crompton, 2006; Vitt, 2007). This differentiation, according to Marx, has been with human societies from ancient times and remains in modern industrial societies. The two groups have undergone changes through time but their respective core relations to the production process, in Marx‘s views, has remained the same. He called the owners of the means of production in modern 12 University of Ghana http://ugspace.ug.edu.gh industrial societies as bourgeoisie and called the non-owners whose labour sustains production as proletariat. According to Marx, the owners of the means of production control the economic institution in society. Their control of the economic institution allows them to control the political, ideological institutions as they seek to protect their interest and power in their contestations against the proletariats. To that extent, individuals in the bourgeois class of the society are the rulers of that society while the proletariat class are the ruled in the society. In light of these, class as explained through Karl Marx‘s theories, is an economic determinist perspective. Max Weber, on the other hand, conceptualises class as aggregates of individuals who have similar ‗life chances‘ with respect to their education, work and their ability to acquire material goods and services (Coser, 1977; Vitt, 2007). The life chances that particular aggregates of individuals experience are founded on how much control that group of individuals have over economic and material resources in any given society, the various skills set and cultural capital that they possess, their taste and preferences as well the incomes that they receive. By reason of this homogeneity of life chances, the similarities in the types of goods and services that they have access to, their living conditions and their personal experiences, individuals who constitute a ‗class‘, and in this instance the middle- class, enjoy similar wealth, prestige, power and social influence (Vitt, 2007). Weber‘s recognition of different classes is an acknowledgment of differential access to resources in society. This uneven distribution of resources also triggers an uneven distribution of opportunities in society. Unlike Marx, however, Weber‘s conceptualisation of class goes beyond economic determinism in the constitution of social classes. This is because class relates individuals to the social structure and market conditions in ways that influence the individuals‘ social standing, preferences and the resources of power and 13 University of Ghana http://ugspace.ug.edu.gh prestige that may be available to them (Coser, 1977; Leinonen, Martikainen & Lahelma, 2012). Thus, following from Weber‘s conceptualisation of class, the middle-class would include property and business owners as well as highly skilled professionals who may not even own their places of work but still command a lot of wealth from their paid work and have enormous control in their spheres of operations by virtue of their working conditions, incomes and prestige (Bruce & Yearly, 2006). Additionally, the middle-class has taste and preference for materials and services that are exclusive and considered by some to be elitist (Bruce & Yearly, 2006; Leinonen et al, 2012). As credible as Marx‘s conceptualisation of class may be, contemporary societies are not organised in class binaries as he suggested. This is because hierarchies in social organisation extend beyond rich owners and poor non-owners of the means of production. There are very affluent non-owners such as business executives, entrepreneurs, sportsmen and women who sell their labour to owners of means of production. There are some owners of means of production such as artisans and traders who do not command as much economic power as the affluent non-owners. In strict Marxian analysis, the former are proletariat and the latter will be bourgeoisie but in fact, the former are more powerful in society than the latter. For this reason, class in this study is taken from the Weberian perspective. Consistent with Bruce and Yearly (2006, p. 196), therefore, this study defines middle-class as ‗non-manual workers who enjoy a wide range of advantages over manual workers but subordinate to people whose wealth means they do not have to work‘. These advantages include but are not limited to forms of lifestyle privileges given by high income levels, occupational status, education, housing, economic and political indices. With this, participants for the 14 University of Ghana http://ugspace.ug.edu.gh study included academics, health professionals, civil servants, information technology (IT) professionals, broadcast journalists, civil society advocates and entrepreneurs. The Use of ‘Persons with Disability’ as the Descriptive Label in this Study The appropriate and suitable term that describes individuals who were born with impairments or acquired the impairments, whether early or later in their lives, is a hotly contested issue (Harpur, 2009; Hernandez-Saca & Cannon, 2016; Hill, 2002). There are various terms such as ―individuals with disabilities‖ (Lyons et al, 2016; Smith, Foley & Chaney, 2008; Tobias & Mukhopadhyay, 2017; Wu, Su, Lin, Chueh & Su, 2009), ―disabled people‖ (Foster, 2017; Horton & Tucker, 2014; Jammaers, Zanoni & Hardonk, 2016; Santos & Santos, 2017), people with disabilities (Hogan, 1998; Hughes & Avoke, 2010; Wax, 2014; Zola, 2005) and persons with disabilities (Baldridge & Kulkarni, 2017; Erickson, Schrader, Bruyère & VanLooy, 2014; Maritz & Laferriere, 2016; Mik-Meyer, 2016a; Sevak, Houtenville, Brucker & O‘Neill, 2015). The proponents of each of the terms believe that their preferred term best captures the social identities of the individuals they represent within the remits of social relations constructed around disability. There are several points of divergence among the various schools of thought on what the appropriate term ought to be but what is obvious from all the contestations about the preferred term is that they all represent an attempt being made to project the identities of persons with disabilities as people deserving of social, political and economic recognition, respect, acceptance and integration. Regardless of the differences, however, there is a political consensus for the recognition of the rights and needs of persons with disabilities (Harpur, 2009). 15 University of Ghana http://ugspace.ug.edu.gh I settled for ‗persons with disability‘ in this study and in doing so, I considered the use of the term in the United Nation‘s global charter on disability known as the ―Convention on the Rights of Persons with Disabilities‖ (CRPD). The CRPD has wide global acceptance and thus I believe ‗persons with disability‘ represents the most accepted term among the lot. That is not to say that the other terms are irrelevant or out of place but rather, I believe that ‗persons with disability‘ is the closest to a consensus term for describing people who are either born with disabilities or acquire disabilities in their lifetime. Organisation of Chapters This dissertation is organised into nine chapters. Chapter One is the introductory chapter and gives a background to the study. The chapter also contains the statement of the problem and significance of the study. Chapter Two details the theoretical resources that underpin this study as well as a literature review. The chapter contains an assessment of the various models of disability as determinants of societal reactions to disabilities and persons with disabilities. The chapter also presents the conceptualisation of stigma and the interaction between stigma and social identities as well as the social process that culminates in the stigmatisation of persons with disabilities. Chapter Three describes the cultural beliefs and practices related to disability as well as the social, political, economic, legal contexts of disability in Ghana. In Chapter Four, the research methods used in the conduct of this study are discussed. The challenges encountered during the field work and how they were dealt with and the processes of data analysis are also presented in the chapter. Chapters Five, Six, Seven and Eight are the analytical chapters and present the issues in the lived experiences of the persons with disabilities and the stigma that they encounter in the social spaces in Ghana. Chapter Five presents the life histories of the 16 University of Ghana http://ugspace.ug.edu.gh participants with a focus on their social class and how that influences their lived experience of disability stigma. Chapter Six deals with the ways in which middle-class persons with disabilities are ascribed inferior attributes on the basis of the impairments that they have acquired. This is a consequence of their possession of stigmatised attributes in their disabilities. In Chapter Seven, I deal with ways in which middle-class persons with disabilities experience simultaneous acceptance and rejection as a result of their disabilities. The identity management responses and strategies that middle-class persons with disabilities use as a response to their stigmatising experiences are presented in Chapter Eight. Chapter Nine comprises the summary, general discussion and conclusion of the study. 17 University of Ghana http://ugspace.ug.edu.gh CHAPTER TWO THEORETICAL RESOURCES Introduction In this chapter, I present the theoretical resources that undergird this thesis. These include a review of the models of disability which are the frames of reference by which disability is conceptualised and understood. The models of disability that are discussed include the individual/medical model, the social model, the social relational model and its psycho- emotional dimension of disability, the minority model and the cultural model. Also included in this chapter are the conceptualisation of stigma as used in this thesis, the dimensions of stigma and the process of stigmatisation as well as the interactions between stigma and social identities. This chapter constitutes the conceptual and analytical framework within which the stigmatising experiences of the participants are situated and discussed. Models of disability Disabilities exist in different forms. They may be physical, intellectual or sensory impairments or mental illnesses. They are usually caused by road, domestic and industrial accidents, amputation, congenital birth defects and diseases such as leprosy, measles and polio and degenerative ones which may be acquired as a result of aging (Maritz & Laferriere, 2016; Naami, 2011). Regardless of the nature and cause of the disability, however, the differences in perceptions and understandings of disability between different cultures can be enormous (Scior et al, 2013). The different ways in which disability is perceived and understood can, however, be arrayed into models that allow for structural and micro analysis of disability and the disability experience. There are two dominant 18 University of Ghana http://ugspace.ug.edu.gh models of disability. These are the Individual Model of Disability, also referred to as the Medical Model, and the Social Model of Disability. These models account for who the target of adjustment in remediating the effects of the disability on the individual should be. There are other influential but less prominent models that can be described as off-shoots of the two dominant models (Brown, Hamner, Foley & Woodring, 2009; Goodley, 2017). These include the social relational model, the minority model and the cultural model. While the various models have varying theoretical underpinnings and different foci, they are all oriented towards fitting persons within disability within society and confronting people‘s attitudes towards disability and environmental barriers. I will examine these models in order to properly situate this thesis. Individual Model of Disability The individual model of disability focusses on the bodily ‗abnormality‘, deficiency or disorder. It posits that disability is a personal tragedy, a breach of normality and renders an individual a victim who ought to be given care by medical professionals (Barnes et al, 1999; Earle, 2003; Maritz & Laferriere, 2016). This model gives disability a biomedical explanation by pathologising physical, sensory and psychological differences and considering these differences as restrictions on the life of the individual who has the disabling attribute. Disability, in this model, is created by a physiological defect requiring some form of ‗fixing‘ to restore normal function (Anthony, 2011; Barnes et al, 1999; Nario-Redmond, 2010). By this model, a dualism of bodily types is created as a means of sorting out different types of bodies, with non-disabled bodies perceived to be better and superior to ‗disabled bodies‘ (Imrie, 1997). There are others who consider disability as a manifestation of psychic activity and for such, disability is not just a physical impairment but rather the manifestation of a supernatural activity with the individual who has the 19 University of Ghana http://ugspace.ug.edu.gh disability becoming the medium through which the supernatural force is made manifest (Avoke, 2002; Bayat, 2015). With the individual model of disability, the functional limitation that causes the disability is identified within the individual. The limitation is then construed as the individual‘s misfortune and personal problem (Griffith, 2011; Lamb, 2001; Oliver, 1990). The health of the individual becomes the disadvantaging factor that explains his or her functional limitation. The individual is then considered as being passive, dependent and needing curative treatment, rehabilitative medical intervention and care to survive and to be able to achieve a ‗normal‘ existence. Such individuals become the subject of medical professionals who dominate their lives and their decision making in the treatment and care process. It is the individual with the impairment who is required by society to adjust in order to adapt and fit into the society because disability is considered to be pathological and inimical to the maintenance of social equilibrium. Failure on the part of the individual to adjust is sanctioned by society (Barnes et al, 1999; Lamb, 2001). The individual model of disability can also be explained through Talcott Parsons‘ Sick Role Theory. For Parsons, being healthy means being ‗normal‘ and being able to contribute functionally towards the sustenance of the social system (Parsons, 1951). Any individual who is unable to play this ‗normal‘ role is effectively disrupting the stability of the social system and for this reason, the system attempts to correct itself by defining a role for that individual. In essence, possessing a flawed body within society is unacceptable. The performance of this role, ‗the sick role‘, is necessary in order that the individual who is unproductive and dependent will be blameless for his or her disruptive behaviour. 20 University of Ghana http://ugspace.ug.edu.gh Within this Parsonian model, persons with disabilities are expected to play the ‗sick role‘ by conforming to social expectations of the role. The ‗sick‘ individual is relieved of all obligations to the social system as he or she pursues restoration of ‗normal‘ health. Being considered sick, the person with disability is not held responsible for the disability and is expected to seek professional care and also desire to be well. For persons with disabilities, the nature of disabilities sometimes means that seeking ‗normal‘ health may not be relevant because some disabilities are not medically reversible. For such people, the care that is sought is medical rehabilitation. The individual model of disability used to be very dominant until it was criticised for being overly focussed on biomedical assumptions and definitions of what constitutes normality as well as the focus on impairments as individual deficits and medical cases that needed to be cured and eliminated if possible (Shakespeare, 2006). The pathologising of disability means that discourse around disability was also too reliant on medical professionals for the provision of therapeutic and social support (Barnes, 2012; Oliver, 1990). The medicalisation of disability gave birth to a disability industry of private and public actors who separately and collectively reinforce the inadequacies and dependence of persons with disabilities (Barnes, 2012; Reindal, 2008). In the individual model of disability, the social restrictions that persons with disabilities experience occurs because they have bodies that are compromised and for that, it is the individual who must either adjust or be helped to adjust (Barnes, 2012). Social Model of Disability The social model of disability posits that the experience of disability is a social creation borne out of society‘s response to the physiological deficiency of an individual (Barnes et 21 University of Ghana http://ugspace.ug.edu.gh al, 1999; Oliver, 1996). The society therefore acts towards that individual on the basis of that deficiency. This model comes largely from the conceptualisation of disability by the British organisation Union of the Physically Impaired Against Segregation (UPIAS) which conceptualised disability as an outcome of a ―society which disables physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society‖ (UPIAS 1976 cited in Barnes & Mercer, 2004, p. 2). From the perspective of the social model, disability occurs through a complex set of linkages that exist between individuals, societies, work and organisations (Foster, 2017). These social responses to an individual‘s impairment range from the existence of individual prejudice, institutional and structural discrimination, the inaccessibility of public buildings, unusable transport systems, limited access to functional healthcare and also from segregated education to excluding work arrangements. These responses, with regards to the social model of disability, represent society‘s failures to incorporate the needs of persons with disabilities in social organisation (Barnes et al, 1999; Oliver, 1996; Scambler, 2009). The social model further clarifies the distinction between impairment and disability. The impairment is the health or bodily condition that an individual may have. It is usually defined medically and is accepted as an individual trait (Barnes & Mercer, 2010). Disability on the other hand is the social oppression and exclusion that is constructed on the impairment leading to the isolation of such individuals and their exclusion from full social participation. Disability then becomes a social problem and a social creation that is borne out of the disabling environments and attitudinal barriers within the society (Barnes et al, 1999; Lamb, 2001). The social model attacks the subordinate social status and 22 University of Ghana http://ugspace.ug.edu.gh devalued life experiences that persons with disabilities are put through by society and seeks to correct same. In its place, the social model calls for the celebration of disability as one of the indices of human diversity (Oliver, 1996; Oliver & Barnes, 2012). By rejecting the causal relationship between impairment and the handicap, the social model of disability argues that the impairment is not the problem as such, but rather, the society and environment into which the individual with impairment is placed, thus moving away from the ‗cure and care‘ of the individual model (Boray, 2011; Earle, 2003; Oliver, 1996). In this regard, it is the failure of the society to accept and accommodate impairments and the individual who carries the impairment that creates the disability. This model does not prescribe a cure for the impairment on the individual‘s body but it advocates for social adjustments in order that the needs of the individuals with impairment will be accommodated. This is founded on the position that disability emerges out of social relations on one hand and persons with disabilities‘ material conditions and environments on the other (Devlieger, 2005). The social model of disability thus attempts to alter repressive societies and educational systems through the recognition of the human rights of people with disabilities and the promotion of values such as tolerance, respect, dignity and diversity so that people with disabilities are adequately integrated into mainstream social, economic and political organisation (Anthony, 2011). The objective of this model is for persons with disabilities to be able to have equal access to the opportunities that society provides for non-disabled people in society. The social model, as a political perspective, has been revolutionary. It shifts the meaning of disability from the individual‘s body to the society‘s deficiencies, making it a progressive perspective with its preference for social action and self-help as remedial measures in society rather than individual‘s adjustment and medicalisation (Barnes et al, 23 University of Ghana http://ugspace.ug.edu.gh 1999; Rice, Chandler, Harrison, Liddiardd & Ferrarie, 2015). The major obstacle of the social model remains the existence of stigma. The stigma that persons with disabilities face is often as a result of the use of the individual model in the definition of disability. There are often very strong social forces that continue to utilise the individual model rather than the social model in considering and determining the meaning of disability as well as the esteem that is accorded to persons with disabilities. The consequence of the reliance on the individual model is the stigma that persons with disabilities experience. The social model has, however, been criticised for its seeming excessive focus on social and public experiences of disability and not much of personal and life experiences and responses of persons with disabilities (Reeve, 2002). To Reeve (2002), this means that the social model largely ignores the cultural and experiential aspects of disability. Shakespeare (2006), citing Morris (1991) and French (1993), and Thomas (2004) also talk about the emphasis that the social model places on social barriers that make it seem that impairments are in themselves not a problem for persons with disabilities. For these critics, the impairments are an important part of the individuals‘ lives and focussing too much on social barriers amounts to denying a critical aspect of their individual identities. While they recognise the existence of the social barriers and impositions, they also make it clear that the barriers affect them and not others, specifically because they have the impairments, for which reason the impairments cannot be ignored in the discussion of social experiences of disability. The Social Relational Model and the Psycho-Emotional dimension of Disability The social relational model of disability is in many ways an extension of the social model of disability and is very popular in Nordic countries. Some writers also refer to the social relational model as the Nordic relational model of disability (Goodley, 2017; Tøssebro, 24 University of Ghana http://ugspace.ug.edu.gh 2004). This model is oriented towards getting persons with disabilities to participate fully in mainstream society by emphasising their individual and collective welfare. The social relational model of disability is founded on what is believed to be the social model‘s apparent ‗denial‘ of the bodies of persons with disabilities in its critique of disability experiences, with its emphasis on the social barriers (Martin, 2013; Morris, 1991; Shakespeare, 2004; Swain & French, 2000). The argument made to that effect is that the social model ascribes the disabling forces to society‘s restrictions, stressing that disability is wholly socially constructed. The criticism is not a rejection of the social model in its entirety but rather, it seeks the recognition of the body and the reality of functional implications caused by bodily impairment in personal experiences within the discourse of disability, rather than focussing on social barriers alone (Grue, 2011; Martin, 2013; Reindal, 2008; Thomas, 2004a). According to Gougeon (2010) and Grue (2011), the impairment introduces constraints to an individual in terms of the tangible social, communicative, and behavioural limitations to mainstream social participation. These limitations add to the social barriers to create the total experience of disability, with its attendant manifestations of oppression, exclusion, marginalisation and stigmatisation. To Gougeon (2010), these are the factors that inhibit persons with disabilities‘ full participation in society. The social relational model offers a framework for focussing on oppressions and discrimination that persons with disabilities experience in addition to the restrictions in activity that society places on them (Reindal, 2008). It is this focus on oppression and discrimination that marks the extension of the social model of disability. The important element in distinguishing between the two, however, is the differentiation of personal experiences of oppression and discrimination from socially imposed restrictions which 25 University of Ghana http://ugspace.ug.edu.gh occur in social situations (Reindal, 2008). For this reason, experiences of disability in the social relational model may be understood as occurring within and beyond social restrictions and impositions towards social inclusion. Martin (2013) also distinguishes between the two and regards the personal experiences of oppression as psycho-emotional oppression. The relational model, as the social relational model may be called sometimes, leans a lot more towards people with intellectual disabilities but remains applicable to other forms of disabilities. At the core of this model is the belief that disability occurs because of a discrepancy between an individual and his or her environment. It emphasises the relationship between a person and his or her environment, believing that disability occurs when there is a mismatch between the two (Tøssebro, 2004). In addition to that, there is the notion that disability is situational and relative (Goodley, 2017; Tøssebro, 2004). In explaining the relational model, Tøssebro (2004) cites the example of a visually impaired person not being ‗disabled‘ when he or she is talking on the phone, neither is a hearing impaired person ‗disabled‘ when he or she is reading a novel. The experience of disability, in this model, is therefore not absolute but rather relative. Persons with disabilities tend to have varying experiences as a result of varying situational determinants yielding different experiential outcomes. Experiences of disability, according to the social relational model are also contextual. A critical aspect of the social relational model that is relevant for this study is the definition of disability that is given in Tøssebro (2004, p. 4), that disability is as "a mismatch between the person's capabilities and the functional demands of the environment." This definition focusses on a gap that exists between the functional capacity of an individual and the demands made by the society or environment. What this means is that disability is 26 University of Ghana http://ugspace.ug.edu.gh a negotiated and relational process that is not absolute, but rather, relative to the individual and contingent on the particular social and environment situation or context (Grue, 2011; Reindal, 2008; Tøssebro, 2004). The gap therefore becomes the basis for determining whether an individual has a disability or otherwise, in this relational analysis. Society and its institutions offer varying opportunities to different people, including persons with disabilities. The gap between the opportunities offered to persons with disabilities and the capacity of the individual to take up the given opportunities define how that individual experiences disability and its oppressions (Grue, 2011; Reindal, 2008). The ability of the individual to fully utilise these opportunities also depends on the social, cultural, environmental, political, economic and religious factors that may inhibit or enhance an individual‘s ability to do so. The social relational model effectively combines aspects of both the social model and the individual model in ways that allow for an escape of criticism of proponents of either ‗strong‘ model of disability without compromising the core poles of the experiences of persons with disabilities (Martin, 2013; Reindal, 2008; Thomas, 2004a). Psycho-emotional Dimensions of Disability: The psycho-emotional dimension of disability emerged in the works of Carol Thomas (1999, 2004a, 2004b) and has since been extended by Hernandez-Saca and Cannon (2016), Reeve (2002), Reindal (2008) and Watermeyer and Swartz (2008) as an addition to the social relational model of disability. Thomas‘ (1999) definition of disability has been utilised in this thesis as mentioned earlier in Chapter One and her definition of disability encapsulates the social restrictions on persons with disabilities as well as the socially constructed undermining of persons with disabilities‘ psycho-emotional well-being. By this, Thomas sought to place disability on the same pedestal as other forms of social oppression such as hetero/sexism, racism, 27 University of Ghana http://ugspace.ug.edu.gh ageism and even ethnocentrism (Hernandez-Saca & Cannon, 2016; Reeve, 2004). Thomas, through this position, draws attention to the fact that disability is a relational phenomenon that has an individual and subjective dimension as well as a structural dimension. The structural dimension exists in the social barriers and restrictions that persons with disabilities often have to contend with as the source of disability oppression. On the other hand, the individual or psychological dimension lies in the micro-politics of the individual and the effect that the social impositions and restrictions have on the thoughts and feelings of the persons with disabilities and the delineation of what may or may not be allowed of the person with the disability (Hernandez-Saca & Cannon, 2016; Reeve, 2004; Thomas, 1999; Thomas, 2004b). The recognition of social forces of oppression (external) that sometimes possess the power to exclude, together with individual influences (internal) in the conceptualisation of the disability is what the social relational model of disability seeks (Hernandez-Saca & Cannon, 2016; Reeve, 2006; Thomas, 2004; Watermeyer, 2009). This stems from the fact that the social forces are not universal but rather particularistic and in like manner, the individual influences, which the psycho-emotional dimension emphasises, are also unique from one person to another. As a result, different situational and contextual factors together with various intersecting personal and social identities come together to define each individual‘s peculiar experience of disability. The individual influences may be seen as internalised oppression and it focusses on the feelings and thoughts of persons with disabilities essentially as the psycho-emotional dimension of disability (Hernandez-Saca & Cannon, 2016; Reeve, 2002). Reeve (2002) cites Pheterson (1986) in explaining internalised oppression as the: 28 University of Ghana http://ugspace.ug.edu.gh incorporation and acceptance by individuals within an oppressed group of the prejudices against them within the dominant society…[and] the mechanism within an oppressive system for perpetuating domination not only by external control but also by building subservience in to the minds of the oppressed groups. (p. 148) By extension, Morris (1991) posits that persons with disabilities are not only oppressed by actual experiences of stigma, exclusion and discrimination, but also by the knowledge that entry into social spaces would elicit public scrutiny, scorn, contempt, condescension, pity and hostility. This conceptualisation is in line with what Goffman (1963) calls ‗felt stigma‘. With internalised oppression, persons with disabilities are compelled to deal with the response of others to their disabilities in ways that can be exclusionary, much in the same way as actual physical barriers exclude persons with disabilities (Reeve, 2004; Thomas, 1999). It is important also, to note that the social forces and the individual influences which interact by combining or opposing each other to oppress persons with disabilities, do not exist independent of each other. They are embedded within cultural representations, that is, the language and images that are characteristic of the society within which the person with disability may be found (Hernandez-Saca & Cannon, 2016; Reeve, 2004). These cultural forces are contextual and they define the inclusion and exclusion criteria of what constitutes disability through a relational process and also provides the determinants of which persons ought to be perceived as persons with disabilities or otherwise. The cultural forces and myths from which oppressive social relations arise, in turn also influence how persons with disabilities conceptualise their disability identities. For these reasons, the conceptualisation of disability experiences necessarily ought to include the psycho-emotional dimension of the disability experience (Hernandez-Saca & Cannon, 2016; Reeve, 2004). 29 University of Ghana http://ugspace.ug.edu.gh Psycho-emotional dimension of disability, in light of all that has been said, includes emotional responses to social exclusion and physical barriers which generate the hurtful feelings, shame, anger and frustrations that follow from the actions and inactions of others in society, feelings of inferiority, worthlessness and unattractiveness, all of which emanate from the stigma that disability carries (Reeve, 2002; Thomas, 2006). Despite the seeming ubiquitous nature of psycho-emotional dimension of disability, Reeve (2004) posits that it is not inevitable nor unchanging, owing to the fact that it is possible for some persons with disabilities to resist the oppression by ―transforming themselves and ‗coming out‘ as a disabled person — reclaiming disability as a positive identity‖ (Reeve, 2002, p. 494). Additionally, Reeve (2004) states that: Not all disabled people will experience this form of disability and it will change in intensity with time and place; whether or not it is more or less disabling than their experience of structural disability will vary and sometimes the two dimensions reinforce each other. (p. 86) For this study, I dwell on ways in which persons with disabilities attempt to challenge and resist the oppression from the psycho-emotional dimension and how they reconstruct their disability identities to reclaim and emphasise the positivity of their social identities. Being able to do this requires what Reeve (2002) calls ‗emancipatory forces‘, which encompass personal experiences, counter identities and the impairment itself. The resistance of the psycho-emotional dimension of disability is a political action that draws on the popular emancipatory phrase – the personal is political (Hernandez-Saca & Cannon, 2016; Thomas, 2006). Persons with disabilities, in their desire not to internalise and accept the negative social reactions to their disabilities, rationalise their disability and the reality of their stigmatising experiences and their effects by deflecting notions of what constitutes disability away from themselves. This rationalisation occurs because the psycho-emotional dimension of disability occurs within the routine interactions that persons with disabilities 30 University of Ghana http://ugspace.ug.edu.gh have with agents such as their families, friends, colleagues at work, members of religious fellowships and even strangers in their homes, schools, places of work and sites of religious congregation (Reeve, 2004). It is in these places that persons with disabilities confront and manage the negativities that their disabilities, through a cultural and interpersonal relational process, induce (Thomas, 2006). Minority Model of Disability The Minority Model emerged under the influence of American civil rights activism in the 1960s through to the 1990s as a challenge to social biases meted out to persons with disabilities (Block, Balcazer & Keys, 2001; Brown et al, 2009; Goodley, 2017; Imrie, 1997). Within the context of the rights activism, the minority model stands in opposition to ‗ableism’. Ableism is oppression against people whose bodies appear and function differently from bodies that are held to be ‗normal‘ by society. As an offshoot of the social model of disability, the minority model posits that the lack or equal rights is the fundamental barrier to equality between persons with disabilities and non-disabled people (Brown et al, 2009). It can therefore be described as a constructionist perspective that situates disability ―within the oppressive and coercive attitudes of society, attitudes reinforced and perpetuated by the practices and discourses of the dominant institutions‖ (Imrie, 1997, p. 267). The minority model essentially seeks to correct the political inconsistency that denies persons with disabilities rights that are otherwise available to non-disabled people by stressing on the importance of equal rights and equal protection under the law. This pursuance of change is seen as the legitimate challenge to the discrimination and prejudices which persons with disabilities face in society as they seek to participate in mainstream society (Brown et al, 2009). Often viewed as a Marxist perspective, the minority model explores and seeks to change the systematic ways in 31 University of Ghana http://ugspace.ug.edu.gh which people suffer exclusion on the basis of their sex, race, sexual orientation and disability by advocating ways in which people can take control of their lives (Block et al, 2001; Goodley, 2017). Cultural Model of Disability The cultural model of disability is a contextual model that derives its ethos from the building blocks of the society within which it is defined. It comes from the social constructs that are used to define the body and bodily differences. In essence, culture is at the core of what constitutes disability and disability is a basis for understanding cultural meanings (Devlieger, 2005; Goodley, 2017). It can thus be said that with the cultural model of disability, there is no fixed definition of what constitutes bodily impairment or disability as the experiences of persons with disabilities are in essence, a reflection of the society. The culture of a society is thus the source of experiences relating to disability and it is within culture that these experiences are localised (Devlieger, 2005). This is because an individual‘s biology and culture influence each other in the determination of functionality. The meanings within culture and their boundaries are mutative and so disability, by this model, is also metamorphic. Disability, therefore, becomes a means through which culture is represented, being situated in meaning and on cultural pillars (Devlieger, 2005). The cultural model of disability thus has fluid conceptualisations of what constitutes disability and what its implications are in society and social interaction. World Health Organization International Classification of Functioning, Disability and Health Framework The World Health Organization (WHO) has a classificatory charter known as the International Classification of Functioning, Disability and Health (ICF). The charter was 32 University of Ghana http://ugspace.ug.edu.gh formulated to provide a standard language and frame of reference for health and health related states (WHO, 2001). One of the conditions of the body that the ICF captures is disability. Disability as a term in the ICF means impairments, activity limitations or participation restrictions. The ICF has two parts. The first part is Functioning and Disability and it covers classifications on body functions and structures as the first sub- category and Activities and Participation as the second sub-category. The second part of the ICF covers Contextual Factors which also comprises to sub- categories. These are Environmental Factors and Personal factors. The environmental factors deal with external influences on functioning for persons with disabilities. Also, it focusses on physical and social forces and how they may facilitate or hinder social participation. For the personal factors, the focus is those internal influences that impact on the functioning of persons with disabilities as well as how attributes of the person influence his or her social involvement. An important function of the ICF is the realisation that an individual‘s experience of disability is borne out of the interactions between bodily dispositions and functions on one hand, and contextual factors in environmental and personal factors on the other. Disability, as conceptualised through the ICF classification, bears semblance to the Social relational model with their common focus on situational, contextual and personal factors as determinants of one‘s disability experience. The various models as presented offer insights into how societies react towards disability. Each of the models addresses a critical aspect of disability that is very relevant for the purposes of understanding disability and the experiences of persons with disabilities. However, much of the conceptualisation and analysis of stigma that is done in this thesis is founded on the social relational model of disability. This is because of the fact that the applicability of the social relational model of disability goes beyond the conceptualisation 33 University of Ghana http://ugspace.ug.edu.gh of disability as social oppression into spheres of political activism through the pursuance of change (Foster, 2017) and also through the psycho-emotional dimension in understanding the internal responses of individuals to disability. Nonetheless, aspects of the other models that are relevant for the analysis of the stigmatising experiences of the persons with disabilities are also used. This is in view of the fact that no single model offers an exhaustive and thoroughly comprehensive framework for analysing disability and the experiences of persons with disabilities. The analysis of the participants‘ experiences of stigma is therefore a reflection of the different theoretical models of disability and how they relate to experiences of the middle-class persons with disabilities in this study. All the models together constitute the social process through which disability, stigmatisation and the meanings that they generate and through which experiences are generated are negotiated (Zola, 2005). Stigmatisation: Perspectives and Issues Goffman‘s seminal work on stigma remains one of the most revered sociological analyses of stigma despite its age. I used Goffman‘s analysis of stigma in exploring the experiences that middle-class persons with disabilities go through in their social spaces. Goffman‘s treatise on stigma is relevant for this work as it defines stigma along the lines of social attributes, identities and how they are responded to by society. In examining the issue of individuals considered outcasts by the society, Goffman (1963) explained stigma as social traits that are out of the ordinary and may be visible abnormalities or physical or mental disorders. He stated that ―sometimes it is also called a failing, a shortcoming, a handicap and that stigma introduces a discrepancy between virtual and actual social identity‖ (Goffman, 1963, p. 3). Stigmatisation thus deals largely with ways in which individuals and society respond to symbols of wellness and illness on 34 University of Ghana http://ugspace.ug.edu.gh one hand, and conformity and deviation on the other, in everyday life activities and how these responses have been constructed around the particular attributes. Stigma therefore represents a view of life, a set of personal and social constructs, a set of social relations and social relationships and is a form of social reality (Coleman, 2006). The association between stigma and disability exists in the perceived negative attributes or consequences of the disability such as altered appearance, delicate health and reduced capabilities of persons with disabilities (McLaughlin, Bell & Stringer, 2004). Stigma renders the identity of an individual spoilt. Consequently, such an individual is given inferior and prejudiced treatment by society (Vernon, 1999). The stigma translates into discrimination which further leads to the reduction in life chances of persons with disabilities. These are manifest in persons with disabilities‘ limited access to employment opportunities, housing and medical care and salient social benefits (Goffman, 1963; Link & Phelan, 2001; Thompson Sanders, Noel & Campbell, 2004). In every society, there is a shared system of belief about attributes of individuals that are considered to be acceptable and what is deemed to be odd. Individuals while relating to each other in social intercourse make attributes about the other and expect the other to fit that expectation (Goffman, 1963). Stigma occurs when an individual fails to live up to that social expectation. Stigma therefore becomes the situation of the individual who is disqualified from full social acceptance and one who is to be avoided, especially in public places by virtue of his or her possession of a socially proscribed attribute (Goffman, 1963). In essence, stigma deprives people of their dignity and interferes with their full participation in society through the recognition of difference and devaluation (Bos, Pryor, Reeder & Sutterheim, 2013; Link, Yang, Phelan & Collins, 2004). 35 University of Ghana http://ugspace.ug.edu.gh Goffman explains further that every society establishes a process of categorising people and their traits that may be considered normal, mundane and ordinary, that is, characteristics that may be considered natural to possess. The attributes that are perceived to be abnormal and considered unacceptable are abhorred. Individuals who possess such loathed traits are therefore ‗stigmatised‘. It must be made clear that it is the attribute that carries the label of shame rather than the individual. Stigma is therefore the disgrace, rather than the bodily evidence of it (Goffman, 1963). Given that the individual possesses the attribute that carries the shame, the shame becomes attached to the individual. These attributions of shame do not reside in the individual but are structurally and culturally embedded. These attributes vary by time and place as what is considered shameful and stigmatising in one social context may not be shameful and stigmatising in another situation (Bos et al, 2013; Scambler, 2006). The degree of shame may also vary by time and place as well the nature of the attribute that elicits that shame. Goffman (1963) further explains that it is not appropriate to simply label an attribute as a stigma. This is because the nature of the social relationship within which the attribute occurs may construe the attribute as positive, negative or even as an insignificant element of an individual‘s identity. The construction of disability therefore means that what may be perceived as disability in one society may not be seen as such in another society. In some instances, the individual with the condition, may not even care to have the condition cured (Barnes et al, 1999; Vassenden & Lie, 2013). Stigma and the ensuing discrimination are thus characterised by cross-cultural diversity and complexities which give rise to varying stigmatising experiences across societies (Parker & Aggleton, 2003). The extent to which the stigma is experienced or is applied depends on the nature of desirable and undesirable attributes, the undesired differences, norms in that social context, time and 36 University of Ghana http://ugspace.ug.edu.gh place. These are necessary because different social and cultural contexts have varying definitions and consequences of stigma (Coleman, 2006). Dimensions of Stigma Goffman went on further to explain that stigma could either be ‗discredited‘ or ‗discreditable‘. Discredited stigma refers to the stigma that is apparent and known about an individual. With this, the attribute that carries the stigma or the differentness that elicit stigmatisation, is known about an individual or is evident at the sighting of the individual. In this sense, the attribute cannot be concealed by the individual who possesses it. Discredited stigma may be as a result of physical body defect, character blemish or tribal stigma (Goffman, 1963). The physical body defect includes disability and other visible bodily marks or evidence of same. Character blemish refers to the possession of traits such as being weak willed, having domineering or unnatural passions, treacherous and rigid beliefs, dishonesty and other character traits and behavioural records that have negative regard in the society. Tribal stigma refers to the shame of possessing identities of race, nations, ethnic groups and religions that are considered the social ‗other‘. Tribal stigma can be transmitted across generations and contaminate entire families and social groups, not just individuals (Goffman, 1963). Discreditable stigma is those ‗stigmatisable‘ attributes of the individual that are not yet known to others within the group or society, but could become discredited once it becomes public. The attribute that carries the shame exists on the individual but is unknown to the people with who that individual engages in social interaction. Another salient classification of stigma is the distinction between ‗felt stigma’ and ‗enacted stigma‘ (Goffman, 1963). The designation of an attribute as stigmatising renders 37 University of Ghana http://ugspace.ug.edu.gh both the personal and the social identity of the individual spoilt. The stigmatising label that the individual assumes exists at two levels. There is a reaction from the society to the attribute that has been labelled. This reaction may lead to the manifestation of tangible or actual stigmatising and discriminatory experiences, or 'enacted stigma'. Enacted stigma is then the overt stigmatisation and the subsequent discrimination that persons with disabilities experience because of their perceived social unacceptability (Scambler, 2009). This may, however, exclude instances of legitimate or fair discrimination in exclusion from driving or operation of industrial machinery (Scambler & Hopkins, 1986). The legitimate exclusion is often seen as a way of preventing persons with disabilities from aggravating their impairments or endangering their lives as well as the lives of others with whom they are in association. The challenge with this, however, is what may be considered endangering remains subject to a social definition. Therefore, legitimate exclusion could as well be a rehash and aggravation of the stigma that may already exist. The stigmatised individual could also have an imagined or perceived response from society and that may significantly alter the individual‘s identity even when the individual is not in public view. This is the 'felt stigma'. The stigmatised individual may be able to conceal the stigma from others around himself or herself, but never from himself or herself leading to an internalised sense of shame and an accompanying fear and the immobilising anticipation of encountering enacted stigma. For persons with disabilities, felt stigma may be the fear of enacted stigma and the shame of association with persons with disabilities (Scambler & Hopkins, 1986). Felt stigma usually makes the stigmatised individuals act in ways that will make them avoid enacted stigma (Goffman, 1963; Scambler, 2009). The significance of the felt stigma is in the uncertainties that characterise the maintenance of normal identities in the face of a possible failure of social interaction (Gray, 2002). 38 University of Ghana http://ugspace.ug.edu.gh Stigma and Social Interaction Goffman (1963) explains that there are times that people with stigma are found in the same social spaces with ‗normal‘ (non-disabled) persons. He describes this type of meeting as ‗mixed contact‘. This mixed contact scenario creates some uneasiness among the stigmatised people and they try to act in ways that diminish the tension and insecurities emanating from being around ‗normal‘ (non-disabled) people. It is not only the stigmatised individuals who feel uneasy about the contact situation. The ‗normal‘ are also disturbed since they are caught between treating the stigmatised person as someone in need of assistance and regarding the stigmatised person as a ‗normal‘ person. Hunt (1966) makes a similar argument when he posits that disability as a challenge does not only come from the presence of impairment but also from relationships with ‗normal‘ non-disabled people. This is because people with disabilities are seen as a challenge to social values that are thought to be unfortunate and hence, they are undesirable and perceived to be only able to contribute very little to the socio-economic good of society. Davis (1961), in like manner, also indicates that there is tension in the interaction between people with disabilities and non-disabled people as a result of ambiguities, embarrassment and ignorance about impairments and the capabilities of the stigmatised persons with disabilities. Some people are often at a loss as to what constitutes appropriate behaviour in their relations with persons with disabilities. The mixed contact scenario that Goffman (1963), Hunt (1966) and Davis (1961) discuss is very relevant for this study. It is established on the recognition of the fact that there are instances when persons with disabilities enter into the same social space with non-disabled people. These spaces include the home, school, work and the site of religious fellowship. These spaces are being considered because they are the dominant sites of habitation in the 39 University of Ghana http://ugspace.ug.edu.gh Ghanaian context (Naami, 2015; Naami & Hayashi, 2011; Nukunya, 2003). Most of the social interactions that an individual may be engaged in occur within and around these spaces. The involvement of an individual in the social relations that exist in these places takes place on a daily basis. When an individual is not in one of these spaces, he or she can be expected to be in another. Social interactions that do not occur in the home, school, work or site of religious fellowship are influenced by what goes on in these spaces. The interactions that take place within the transit spaces between the home, school, work and site of religious fellowship are influenced by what happens within the identified social spaces. An analysis of the uneasiness that persons with disabilities experience as a result of being in the same social space with non-disabled people has been done in this study, taking into consideration how the disability becomes a part of the interaction and consequently, an aspect of the social experience of the persons with disabilities who are assigned negative attributions and that makes them stigmatised (Kassah, Kassah & Agbota, 2012). Also considered in this study is the response of persons with disabilities to the uneasiness and the tension associated with mixed contact situations. In addition to these, the ways in which people with disabilities are treated by the non-disabled people in these spaces have been analysed. Variations in the treatment of persons with disabilities by non-disabled people in the spaces occur because of different social forces which come into play within the interaction and they give rise to different manifestations of stigma and different feelings of oppression, discrimination and empowerment. 40 University of Ghana http://ugspace.ug.edu.gh Stigma, Class and Social Identities Stigma is a cultural and relational phenomenon that borders on the social meaning of identity and traits that give rise to these identities (Burris, 2002; Francis, 2012). The shame of the stigma and the social relations within which it is embedded are produced and reproduced in social interactions which are guided by social norms and value systems (Goffman, 1963). Stigma contaminates social identity and separates a stigmatised individual from society and from himself or herself. According to Goffman (1963), any individual who has an attribute that is stigmatising appears in the view of the society as less desirable, weak and dangerous. The worth of such a person is reduced from a whole to what Goffman describes as a tainted personality and his or her identity is therefore discounted. The presence of disability spoils the identity of the individual given that persons with disabilities are seen as deviants who are a scar on society and societies‘ conscience. The stigma associated with disability is extended to people with disability and they are seen as being of little worth. Whoever the stigma is attached to becomes an outsider of sorts within his or her society. Even though an individual possesses several identities at any given time, one attribute may become the master status and override other attributes. The dominant attribute is the one that is considered the most salient within the context of the social situation and is accorded much importance (Coleman, 2006; Goffman, 1963; Gray, 1993; Miller, Chen, Glover-Graf & Kranz, 2009; Taub, Blinder & Greer, 1999). Disability as a status in a number of instances becomes the master status of persons with disabilities and an individual with disability is likely to be treated without recourse to his or her other statuses. The disabling 41 University of Ghana http://ugspace.ug.edu.gh attribute and the stereotypes that fit the stigma associations of that attribute are the only attributes that remain salient in such social interactions. Scambler (2009) argues that Goffman‘s interactional analysis of stigma does not adequately deal with structures like class, command, gender, ethnicity, the analysis of which is usually done beyond the interactionist perspective. As an alternative, he calls for the awareness that ‗stigmatization is rarely the sole ingredient of disadvantage‘ because stigma acts on other social identities to create the disadvantages (Scambler, 2009, p. 450). Scambler states that these structures have a constraining effect on social interaction that is similar to Durkheim‘s social facts. He adds that the stigma and discrimination that exists do not just occur in the context of a dyad, but also occurs with a structural and institutional dimension. It is in this social environment within which the persons with disabilities experience the stigma which is apparent in a number of ways. Scambler (2009)‘s recognition of different structural identities in the framing of stigma leads me to an analysis of intersectionality as a way of establishing ways in which different social identities combine to influence social experience and in the context of this study, the different stigmatising experiences of middle-class persons with disabilities. Intersectionality, which comes from feminist epistemology, is the view that women‘s experience of oppression is not universalistic, but rather varied in nature, form and intensity (Crenshaw, 1991; Hill-Collins, 2000). The variations in oppressions are borne out of different cultural and societal identities which intersect with each other to create different types of experiences, sometimes unique to particular individuals, places and epochs. With this perspective, there is no single model of oppression but rather, different social identities such as race, age, gender, social class, sexuality, ethnicity, nation, disability and other forms of social identities intersect to form different experiences 42 University of Ghana http://ugspace.ug.edu.gh (Crenshaw, 1989; Foster, 2017; Hill-Collins, 2000; Mpofu & Harley, 2006; Santos & Santos, 2017; Vernon, 1999). With respect to disability, persons with disabilities do not experience the same kinds of oppression, as expressed in stigma. In the Ghanaian society (where race is almost homogenous), disability intersects with gender which intersects with social class which intersects with ethnicity which intersects with religion which also intersects with physical location. In effect, persons with disabilities have myriads of stigmatising experiences. This is because each individual has a unique combination of social identities in different social and spatial contexts. In some situations also, some stigmatised people suffer multiple disadvantages when different stigmatised social identities intersect (Dhamoon, 2011; Pal, 2011; Shaw et al, 2012). These give rise to different sets of experiences, though they all may be stigmatising and therefore oppressive. The social oppression that disability engenders leads to persons with disabilities experiencing inequalities in different aspects of social life. They have limited access to education, health care, employment, housing, and transport. These inequalities are created by structural, material and cultural factors in society. As a consequence, the burden of the disability becomes the challenge of the individual since it is seen as a personal problem rather than a social problem. The individual who has the disabling condition is expected to seek treatment and ensure that there is adjustment as the disability is medicalised (Barnes et al, 1999; Earle, 2003). That is the dominant view of disability but middle-class persons with disabilities defy this dominant perception and expectation of persons with disabilities. They have a spoilt identity because of their disabilities but their social, economic and political worth makes it near impossible for them to be completely marginalised and excluded from social milieu 43 University of Ghana http://ugspace.ug.edu.gh because of their disabilities. In one breadth they are very valuable because of their social, cultural and political capital. In another breadth, they have spoilt identities because of their disabilities. Their experiences of stigma therefore extend over their social, cultural and political capital on one hand, and their disability on the other. It is the complexity in these experiences that this study examines. This way, the processes involved in how social, economic, and political power shape the distribution and experience of stigma in social relationships, is analysed (Kleinman & Hall-Clifford, 2009). These relationships occur in myriad of places but for the purpose of this work, the social places being considered include school, work, home and centres of religious communion. This is expected to give an insight into how these social indices intersect with disability and space to define the experience of middle-class persons with disabilities. From the social relational model, it is important to note that the social response to disability is a factor of a number of variables. These include but are not limited to prevailing social norms of the society, value systems, ideologies and beliefs among the society, social constructs such as gender, kinship rules, rites and rituals, daily actions, behaviours and relationships in relation to the impairment as well as the policies, structures and health systems that impede or enhance individual and collective responsibility and social action. Variables such as social class position, the type, degree and severity of impairment, ethnicity, gender, sexuality and age are powerful determinants of the disability experience, just as they modify or aggravate the experience of other forms of oppression. The experiences of oppression as caused by a stigmatising condition or attribute can be condensed in the presence of privileged social statuses such as higher social class status (Vernon, 1999). Stigma leads to a unique form of downward social mobility when the 44 University of Ghana http://ugspace.ug.edu.gh stigmatised individual or the one who acquires a stigma loses his or her place in the social hierarchy on the back of the constraining influence of the stigma (Coleman, 2006). For individuals who occupy higher social class positions whiles carrying the stigmatising attribute, the higher social class advantages are used to compensate for the oppressions that the stigmatising attributes forces on them. Class privilege thus becomes leverage against stigma (Hale, 2010). Nevertheless, stigma can be so powerful that it would neutralise whatever positive qualities and advantages class position may provide and thus undermine the identity of stigmatised individuals (Coleman, 2006). The Janus-faced experiences of high social class position and disability create a montage of social experience that is quite difficult to fathom due to uncertainties about which social status would become prominent and under what circumstances. The position of middle- class persons with disabilities in the social hierarchy is low because of their stigma but their position in the economic and political order may be high due to their social class position (Coleman, 2006), Alternative identities are created in the presence of social positions of esteem and the stigmatised disability. These dual identities exist in one person and are inconsistent with social expectations (Hale, 2010). When the privileges of class increase, the oppression and stigma of disability are likely to decrease and conversely, diminishing social class identities and privileges exacerbate the oppression and stigma that is experienced. This means that social class is a potent diluter and modifier of the stigmatising disability experiences within the social, economic and political spheres (Vernon, 1999). For some of those occupying high social class positions, they have the added advantage of power and capital in their ability to assert their rights and advocate for their oppressed groups (Hale, 2010). 45 University of Ghana http://ugspace.ug.edu.gh Being stigmatised, however, despite being in a high social class position, sometimes has severe constraints on their ability to achieve such a voice because of the subordinate position of disability. This is because of the limited representation of stigmatised individuals in mainstream social, political and economic systems (Idress & Ilyas, 2010). The disability sometimes becomes reason for the disregard of such attempts at advocacy. Another important factor in the experience of stigma is the intersection of multiple oppressions. ‗Multiple oppression' is the situation where an individual is attributed with two or more stigmatised identities, a situation which intensifies the stigma experiences of that individual. The experiences of the two or more identities may be simultaneous or separate, as determined by the social context (Vernon, 1999). Multiple intersecting identities give rise to varying social experiences and experiences of stigma (Holley, Stromwall & Bashor, 2012; Lekas, Siegel & Leider, 2011). For instance, black people in North America and Europe, women, LGBTs men and women, older people and people from the lower social classes are all stigmatised by these identities. When disability occurs with one or more of these identities in an individual, the oppression and stigma of the disability and the other identities is exacerbated by the interaction of these identities. This ‗double burden‘ of stigma occurs for persons with disabilities who have other stigmatising identities (Parsons, Bond & Nixon, 2015; Vernon, 1999). The presence of privileged identities also modifies the experiences of stigma and oppression (Vernon, 1998). What this means is that, since any individual may have several identities, both privileged and oppressed, there are myriads of experiences that the individual may have as these multiple identities intersect among themselves, where no two 46 University of Ghana http://ugspace.ug.edu.gh people may have identical experiences because of the differences in these identities, context, time and place. Culture, Disability and Stigma Human attributes vary enormously and the contexts within which they are considered also vary. Within every culture or social group, some differences in human attributes are considered normal and are valued and desired whiles other attributes are devalued, feared and ultimately stigmatised (Coleman, 2006). What may be considered normal is, however, dependent on situational, temporal and cultural factors. What may be thought of as normal within one culture may be abnormal and abhorred in another (Earle, 2003). This means that the designation of desired attributes and undesired attributes is highly dependent on the particular social context and it is influenced by prevailing social norms and value systems (Coleman, 2006). The context and the type or degree of severity of the impairment notwithstanding, however, the impaired body remains the object of attention and the entity that elicits adverse response because a body perceived to be weak and inferior is despised. This perception occurs because the impaired body challenges notions of competence with its desecration of conventional standards about attractive and orderly bodies. Consequently, individuals who possess non-conforming bodies have limited access to resources and diminished opportunities and privileges that others who do not possess that attribute in society have access to (Taub et al, 1999). The traditional view of disability is that it is a tragic problem of an unfortunate individual. This contrasts the social model view of disability which emanates from social oppression and social exclusion (Earle, 2003). Individuals who have impairments usually have difficulties fitting into the social networks and relationships that are available in society. They have difficulties in making and maintaining friendships, marriages and other rather 47 University of Ghana http://ugspace.ug.edu.gh mundane associations because of their appearances which are a deviation from social expectation as well as some functional incapacitation on their part. A number of factors account for this. These may include but is not limited to poor social skills and communication problems, low self-esteem and functional limitations (Kusow, 2004). Added to these are social and environmental factors such as lack of adequate transportation, education, healthcare and other social barriers which limit their social participation and capacity to develop meaningful relationships (Kusow, 2004). The Social Process of Stigmatisation Link and Phelan (2001) have attempted a conceptualisation of the social process leading to the emergence of stigma in social interaction. Their conceptualisation of stigma is very popular within the literature on stigma (Ali et al, 2014; Chiu et al, 2013; Cobigo, Ouellette-Kuntz, Lysaght & Martin, 2012; Francis, 2012; Green, Davis, Karshmer, Marsh & Straight, 2005; Scior et al, 2013; ). In so many ways, it can be described as a synthesis of stigma by Goffman (1963) and Howard Becker‘s Labelling (Becker, 1963). Stigma, by Goffman has been discussed already in this chapter so I will touch on Becker‘s labelling theory as he expressed in societies‘ creation of deviance and ―outsiders‖ out of its rule- breakers. In labelling, a trait of an individual is questioned through a subjective, rather than an objective process that results in the designation of the trait as being symptomatic of social deviance. The deviation, according to Becker (1963), occurs because of an infraction against a societal rule. Society then seeks out the one who has gone against the rule together with the situations that led to the infraction of the rule. By this, people who have broken similar rules are held as a single category of people because of the homogeneity in their infractions. By their infractions, such rule-breaking individuals become ―outsiders‖ 48 University of Ghana http://ugspace.ug.edu.gh because they have acted outside of society‘s norms. Deviance is therefore borne out of what society makes of individuals‘ actions. It is the response of others to an act by an individual in society that determines whether that act constitutes deviation or otherwise. The label given to the trait becomes the identity of the person on whom the trait exists. The individual who carries the trait is ‗the offender‘ and that individual becomes a deviant if the label is successfully attached to him or her. The trait carries with it several other auxiliary labels that are ascribed to the individual. With this, different forms of deviation may be created and they have varying social consequences and sanctions. According to Becker (1963), deviants, by their label are deprived of the routine opportunities that that are available to everyone else in the society and that is because the society is unable to trust them to live by the rules of the society. As an interpretivist model, labelling involves a process of social judgement through which definitions and meanings are contested and do not remain static but rather changes through time (Barnes & Mercer, 2010). With respect to disability, social rules define a bodily trait as being deviant (Kitchin, 1998). Once the label of deviation is attached successfully to that individual, the society will treat that person as a deviant. Link and Phelan (2001) extend the analysis of stigma beyond Goffman (1963) by integrating the social process of labelling within it. They posit that stigma is enacted through the co-occurrence and convergence of labelling, stereotyping, separation or social distancing, status loss and discrimination. Human attributes are distinguished and labelled according to their differences in a social process of selection that determines which differences are consequential in social relationships and which ones are not (Link & Phelan, 2001). The prevailing cultural beliefs then connect the undesired attributes to the labelled persons in the formation of negative stereotypes. These stereotyped people are 49 University of Ghana http://ugspace.ug.edu.gh then put in distinct groups in order to separate them from those without the questionable trait. The stereotyped and separated individuals then experience status loss owing to their diminished and downgraded social status which emanates from their possession of the undesired attribute. Following these is the experience of discrimination which happens because the individuals have been labelled, stereotyped, separated from others and experienced status loss. The basis upon which such individuals may be devalued, rejected and excluded is then established within the society or group through a social process of interaction. Since that individual is deemed to be less attractive and possesses little worth, he or she may be overlooked for several of societies‘ opportunities (Link & Phelan, 2001). These social processes are also sensitive to and influenced by situational factors and cultural forces, time and place. Status loss and discrimination, according to Lucas and Phelan (2012, p. 311) have different dimensions which ―overlap with the status-tradition concerns of influence and prestige.‖ Social structures confer privileges of power on some people and oppression on others. These differential accesses to power in a society are central to the production of stigma. This process of stigmatisation, however, only occurs in the presence of a differential access to social, economic and political power. Stigmatisation emerges within broader social institutions and structures in specific contexts of culture and power and is perpetrated by hegemony and the exercise of these societal powers (Bos et al, 2003; Link & Phelan, 2001; Parker & Aggleton, 2003; Parsons et al, 2015; Scambler, 2009). The differential access to power allows one or several groups of individuals in the society to identify and label differences, construct stereotypes against such labels, separate the labelled individuals into distinct categories and show their disapproval, rejection, exclusion towards them, thereby discriminating against them. Stigma and the ensuing 50 University of Ghana http://ugspace.ug.edu.gh discrimination are thus social processes that can only be understood within the context of power and domination in society, and as a decentralised mode of social control that operates in the attitudes and behaviours of powerful social forces that are able to assert their power over people with the stigmatised trait and accord them a subservient social status (Burris, 2002; Parker & Aggleton, 2003). The power and ability of non-disabled people to discriminate and stigmatise persons with disabilities is occasioned by the fact that the non-disabled occupy the normative status in society and the persons with disabilities are the social ‗other‘ that possesses the abhorred trait. In the case of the middle-class persons with disabilities, the power is often shared. The middle-class persons with disabilities may possess the political and economic power that is occasioned by their superior education, wealth, occupational prestige, political influence, social and cultural capitals but the moral right and legitimacy for uprightness within the society, which is the social power, may be with the non-disabled and ‗normal‘ people. In this situation, the side whose cognitions and power prevails is able to construct the other as an inferior group and thus label them to be different (Link & Phelan, 2001). It must also be said, however, that categories of people who do not have much power may be able to label and stereotype people who have more power, and even separate themselves from the latter but the absence of enough social, cultural, economic, and political power that is necessary for the occurrence of status loss and discrimination would mean that the former cannot actively discriminate against the latter (Link et al, 2004). To Link and Phelan (2001), there would not be enough in that to warrant this as stigmatisation. The nature and form of stigmatisation of middle-class persons with disabilities, therefore, depends on who has what power to use and how that power is used against other groups in society. As Coleman (2006, p. 142) states, ―this conceptualization of stigma also indicates 51 University of Ghana http://ugspace.ug.edu.gh that those possessing power, the dominant group, can determine which human differences are desired and undesired. In part, stigmas reflect the value judgments of a dominant group.‖ There is a definite social process that allows the views of one group to dominate the other. This recognition is necessary because groups that have limited social, economic, and political power also label and form stereotypes about groups with greater power. This situation does not, however, lead to stigmatisation and discrimination because the group with the limited power does not have the power to imbue their cognitions with serious stigmatising and discriminatory consequences which can lead to the marginalisation and exclusion of those persons (Link & Phelan, 2001). In yet other cases where the labelled (the stereotyped) and the labellers (those who stereotype) have equal power or where the former has more power than the latter, the labelled (the stereotyped) are able to use their power to resist manifest discrimination even without any loss of status (Green et al, 2005). The routes to successful enactment of discriminatory outcomes which occur as a consequence to the stigma are flexible and broad. There are three of such mechanisms namely, individual discrimination, structural discrimination and self-stigma (Baffoe, 2013; Link & Phelan, 2001). Individual discrimination is when an individual, particularly a non- disabled person, engages in an overt act of denial, rejection or contempt on the basis of an identified stigma. Structural discrimination exists in social networks and as accumulated disadvantage over time. Stigmatised individuals may not get the opportunity to join in social connections and form informal relationships around professional successes and other achieved statuses (Burris, 2002). While no individual may openly show contempt towards an individual because of his or her stigmatised trait, the cumulative effect of stigma over time becomes institutionalised and works against persons with disabilities as 52 University of Ghana http://ugspace.ug.edu.gh discrimination. Structural discrimination also occurs when a public space does not support functional activity of persons with disabilities. Self-stigma, which is akin to internalised oppression under the psycho-emotional dimension of disability and Goffman‘s felt stigma, occurs when an individual and his or her family internalise the negative attitudes of society and ends with self-blame and low self-esteem (Baffoe, 2013). The diminished access to such social connections and networks marginalises them though not a single individual may be held responsible for that situation. Self-stigma functions through a stigmatised individual‘s own beliefs and behaviours with the acceptance, internalisation and conformance to the diminished social status. Discrimination is in this case founded on patterns of dominance and oppression as the struggle for power and privilege ensues within social interaction. Stigma also becomes central to the reproduction of the same relations of power and control, valuing some groups and devaluing others (Parker & Aggleton, 2003). Stigma manifests itself in the social distance that is created between the stigmatised people and the non-stigmatised people. The social distance is meant to exclude the stigmatised individuals from social interaction (Lucas & Phelan, 2012). Dalal (2010) posits that stigma and discrimination co-occur in a vicious cycle, whereby stigma precipitates discriminatory attitudes. Discrimination in this sense is not just what one individual metes out to another but rather, a structural or institutional arrangement of exclusion (Scambler, 2009). These stigmatising attitudes are revealed through stereotypes which manifests in actual acts of exclusion and discrimination. The vicious cycle may be broken in some situations and when that occurs, the stigma may come without an explicit act of discrimination (Dalal, 2010). In the end, acts of discrimination become some of the easy ways through which stigma is made manifest. Beyond actual acts of stigma-induced discrimination, however, 53 University of Ghana http://ugspace.ug.edu.gh the attitudes of people, languages used in social interaction as well as various forms of images all combine to define the nature of stigmatising experiences that an individual with a stigmatising trait such as disability may have. Summary In this chapter, I have discussed the various models of disability and how each offers a different understanding of disability. While much of the analysis in this work is from the social relational model, the relevance of the other models is not in doubt. In so many ways, they offer a means of strengthening the conceptualisation of the disability experience. What is obvious from all of these models is that stigma emerges from a complex social process that is fed by different individual identities, different social meanings and the ascription of labels that isolate and expose certain individuals in society to various forms of stigmatising treatments and oppression. The process of stigmatising persons with disabilities follows a complex route through which persons with disabilities are systematically identified, labelled, stereotyped and marginalised in society. As a constructed experience, stigmatising experiences represent intricate ways through which society reminds persons with disabilities that they have compromised bodies that compromises their personal and social identities and thus renders them unacceptable members of a ‗normal‘ society. 54 University of Ghana http://ugspace.ug.edu.gh CHAPTER THREE DISABILITY IN GHANA Introduction This chapter presents the background of disability in Ghana. This includes the demography of disability in Ghana, that is, the number of persons with disabilities in each of the 10 regions of Ghana. Also presented is the distribution of various kinds of impairments in Ghana and the regional distributions of the various kinds of impairments. The chapter also looks at the situational and contextual issues relevant in the determination of social differences and the ascription of positive and negative value to these bodily attributes in Ghana. The experiences of persons with disabilities in various contexts in Ghana are presented. These contexts are cultural and religious, economic, social, political and legal and gender relations. The chapter also looks at some progress that has been made in eliminating what may be considered entrenched ‗Disablism‘ in Ghanaian society. Distribution of Disability in Ghana The global population of persons with disabilities is estimated to be between 15% and 19% of the world‘s population, making persons with disabilities the world‘s largest minority group (WHO, 2011). About 80% of these persons are believed to be living in developing countries (Mensah et al, 2008; Naami & Hayashi, 2012; Naami, 2011; Naami et al, 2012). In Ghana, the population of persons with disabilities is estimated to be about 3% of the total population of the country (GSS, 2012). That amounts to about 737,743 people, making them one of the country‘s biggest oppressed groups (GSS, 2012; Picton, 2011). Table 1 shows the population of each of the 10 administrative regions of Ghana and the number of persons with disabilities in each of the regions. The table also shows the 55 University of Ghana http://ugspace.ug.edu.gh percentage of the persons with disabilities in each of the regions and the kind of impairment that they have expressed as a percentage of the number of persons with disabilities in each of the regions. When the number of persons with disabilities in the regions is compared to the total population in each region, Volta Region has the highest number of persons with disabilities at 4.3%. The Upper East Region and Upper West Regions follow with 3.8% and 3.7% respectively. Brong Ahafo Region has the lowest number of persons with disabilities at 2.3%, relative to the total population of the region. Northern Region has the second lowest at 2.5%. Ashanti Region and Greater Accra Region, the two most populous regions in Ghana, follow with 2.6% each. The number of persons with disabilities in Ghana expressed as percentages of the total population of the regions is shown in Table 1. Table 1: Regional Distribution of Persons with Disabilities in Ghana Type of Disability (% of Persons with Disabilities Population) % Popn. of (Relative Total Persons to Popn. of with Region Regional Region Disabilities Popn.) Ashanti 4,780,380 124,501 2.6 40.2 14.5 14.1 25.9 14.4 16.1 10.0 Brong Ahafo 2,310,983 54,038 2.3 33.0 16.9 16.6 27.7 16.0 21.3 9.2 Central 2,201,863 75,939 3.4 42.9 14.1 12.9 28.6 13.0 15.3 8.2 Eastern 2,633,154 94,579 3.6 42.3 15.9 15.2 29.4 15.6 18.1 7.9 Greater Accra 4,010,054 103,939 2.6 42.2 10.3 13.2 23.3 16.8 21.3 11.2 Northern 2,479,461 61,294 2.5 28.7 17.7 12.3 18.4 15.9 23.6 21.9 Upper East 1,046,545 39,924 3.8 30.8 16.4 9.6 16.8 9.9 10.2 6.3 Upper West 702,110 25,746 3.7 37.5 17.7 10.6 21.0 12.8 18.2 15.8 Volta 2,118,252 91,767 4.3 44.3 15.6 13.5 26.6 16.8 21.1 7.6 Western 2,376,021 66,016 2.8 41.6 13.2 13.7 25.2 14.8 16.3 9.3 National Totals 24,658,823 737,743 3.0 40.1 15.0 13.7 25.4 15.2 18.6 10.4 Source: GSS (2012) 56 Sight/ Visual Hearing Speech Physical Intellectual Emotional Other University of Ghana http://ugspace.ug.edu.gh Out of 737,743 persons with disabilities in Ghana, about 40% have a form of visual impairment, making visual impairment the most common form of disability in Ghana. About 25% are physically challenged (mobility restrictions and limited use of limbs), 15% have hearing impairment. Those with speech impairment, intellectual challenges, and emotional/behavioural challenges are about 14%, 15% and 19% of the total number of persons with disabilities in Ghana respectively. About 10% of the disabilities are of an unspecified nature. These categories of impairments are, however, not mutually exclusive. Some persons with disabilities have multiple impairments and their impairments are recorded separately. The distribution of impairments in Ghana can be seen in Table 1. The ‘Meaning’ of Disability in Ghana Disability in Ghana is mostly conceptualised, understood and explained from the individual model of disability under the heavy influence of traditional beliefs which are often flawed and founded on stereotypes and misconceptions. These stereotypes create and reinforce the negative conceptualisations about disability (Anthony, 2011; Avoke, 2001, 2002; Bayat, 2015; Kassah, 2008; Naami et al, 2012; Nukunya, 2003). The misunderstandings and the lack of knowledge about disability issues sometimes make it difficult for people to understand the nature of particular disabilities and distinguish between various forms of disabilities (Avoke, 2001; Bayat, 2015; Naami et al, 2012). Persons with disabilities experience acute social stigma that leads to what Picton (2011) terms as a culture of entrenched discrimination. Also contributing to persons with disabilities‘ experience of stereotypes, prejudice and discrimination is the nature of their encounters with non-disabled people. Depending on whether the outcome of that encounter is positive or negative, perceptions about persons 57 University of Ghana http://ugspace.ug.edu.gh with disabilities are formed. These perceptions then influence how persons with disabilities are treated in society, the opportunities that are made available to them and their acceptance in their communities (Reynolds, 2010). Negative attitudes and perceptions about persons with disabilities lead to added isolation and marginalisation of persons with disabilities in Ghana (Baffoe, 2013). Limitations of policy, institutional and structural deficiencies also make it difficult for disabilities to be properly explained and understood in Ghana (Avoke, 2001). These failings add to the production and reproduction of stereotypes and prejudices that exists about disability in Ghana and they culminate in the various forms of stigmatisation experienced by persons with disabilities in Ghana. There appears to be a disregard for the abilities of persons with disabilities in Ghana. Their capabilities are doubted and they are often perceived to be ignorant, lazy, incompetent, and stupid and are stigmatised and thus discriminated against on those bases (Attafuah, 2000; Naami et al, 2012). Consequently, those who extend assistance to them often do so in a condescending manner owing to the stigma that is attached to disability. The support, care and assistance that are given to persons with disabilities is usually founded on the individual model of disability which makes persons with disabilities objects of pity and care (Slikker, 2009). This is largely because some persons with disabilities are readily visible on the streets as beggars or in rural areas and have been the subject of several direct interventions by non-governmental agencies and donors (Baffoe 2013; Kassah, 1998; Kassah, 2008; Naami & Mikey-Iddrisu, 2013; Roosta, Black & Rea, 2013). The challenges of persons with disabilities exist in their troubled access to education, housing, employment and job training opportunities. They also have limited access to transportation, information as well as inadequate medical systems and few social welfare benefits (Naami & Hayashi, 2011). Added to these is an unbridled paternalism and lack of 58 University of Ghana http://ugspace.ug.edu.gh respect due to people‘s myopic conception of persons with disabilities capabilities. These difficulties exist for all persons with disabilities, irrespective of the type of disability (Attafuah, 2000; Naami et al, 2012). In Ghana and as it is in many other places, disability is an undesired trait and deplored to the extent that some institutions of care that are set up for individuals with mental illnesses and intellectual disabilities are situated away from established settlements. This is done in order that the inmates would not, as is believed by many, pollute the rest of the society or community with their impairment. These customary beliefs and limitations form the basis of stereotypes that ultimately end up as stigmatising to them, forcing them to accept marginal and unproductive social roles (Kassah, 2008; Naami & Hayashi, 2011, 2012). Persons with disabilities are denigrated and given pejorative labels (Agbenyega, 2003; Avoke, 2002; Naami & Hayashi, 2012) and are severely constrained in their attempts to occupy high positions in society. This occurs because they are denied several opportunities to obtain standard education opportunities (Anthony, 2011) and to enter into mainstream employment (Kassah, 2008; Naami & Mikey-Iddrisu, 2013; Naami, 2015; Reynolds, 2010). As a result of these, the social expectations of persons with disabilities are often lowered as they receive little education, inadequate healthcare and encounter problems feeding themselves and surviving because they are poor (Kassah, 2005). The Cultural and Religious Context of Disability in Ghana Religion plays a very important role in social interactions in Ghana. Attitudes about disabilities and behaviour towards persons with disabilities in Ghana are influenced enormously by the interplay between social status, religious and cultural beliefs (Anthony, 2011; Slikker, 2009). Social and communal relationships in Ghana are mediated by 59 University of Ghana http://ugspace.ug.edu.gh cultural beliefs and practices and an important aspect of this is kinship and family ties. It is through this that the individual acquires an identity. Individuals in a community or society are connected through a system of social obligations and benefits. Spirituality and religious belief systems are very much a part of these social interaction and kinship structures (Anthony, 2011). These religious beliefs form the basis of how persons with disabilities are perceived and treated in Ghana and also account for several of the barriers and exclusion that persons with disabilities face in their daily lives (Anthony, 2011; Slikker, 2009). In Ghana, impairments are often thought to be manifestations and outcomes of supernatural activities. Disabilities are believed to be inflicted on people as punishment from deities, malevolent spirits, ancestors or as a curse for sins committed in the individual‘s present lifetime or in their earlier lives or by their family relations, either dead or alive, or to be caused by witchcraft or ‗juju’ (Agbenyega, 2007; Avoke, 2002; Bayat, 2015; Botts & Owusu, 2013; Kassah, 1998, 2005; Slikker, 2009; Naami et al, 2012; Naami & Hayashi, 2012). Disability is also believed to be caused by oracular curse on a family (Naami, 2014). As a result of these, the customs, traditions, religious beliefs, superstitions and folklore create and reinforce the negative attitudes and reactions to disability, thereby adding to the discrimination and prejudice against persons with disabilities in Ghana (Attafuah, 2000; Naami et al, 2012). Sometimes, owing to the belief in reincarnation, persons with disabilities are deliberately maltreated and punished for sins they are believed to have committed in their previous lives (Attafuah, 2000). Some intellectual developmental delays and challenges are in some Ghanaian communities often attributed to spiritual factors and are thus considered spirit-caused diseases. In some instances, the individual who has the disability is blamed for spiritually causing his or her own impairment to cause financial loss to his or her family (Obeng, 2007). 60 University of Ghana http://ugspace.ug.edu.gh The communal lifestyle of Ghanaian communities has an influence on how disability is conceptualised. The responsibility of the disability is not only on the persons with disabilities but on his or her family as well. The social effect is therefore not limited to the person with disability (Anthony, 2011; Naami, 2014). People are therefore careful to do anything that will enable them avoid the misfortune of having children who have disabilities and attracting such negative societal reactions. For instance, there are pregnancy taboos that are expected to prevent the birth of children with disabilities. In the event that such children are born, the cause of the disability is attributed to spiritual factors and considered as misfortune (Agbenyega, 2003; Opoku, Badu, Amponteng & Agyei- Okyere, 2015; Slikker, 2009).The presence of disability in a family or community is therefore seen as a sign of displeasure from the gods. The stigma, negative cultural and social attitudes that come from having a child with disability in the family often make families reluctant to associate with or be seen to be associating with children with disabilities (Fefoame, 2009). Families often subject children born with disabilities to several forms of abuses like physical and verbal abuse, isolation and denial of basic needs and all of these are justified by belief in the supernatural or by social sanctions. Some of these forms of abuse have fatal consequences (Bayat, 2015; Kassah, et al, 2012). In some of the most extreme beliefs and practices about disability in Ghana, children who are born with disabilities in especially the rural areas and some parts of northern Ghana, almost certainly face death which occurs almost immediately after birth (Attafuah, 2000; Bayat, 2015; Naami & Hayashi, 2012). Such children are seen as a violation of traditional belief systems and the families of such children risk taking on the perpetual shame for having a kin with such undesirable attributes (Agbenyega, 2003). Families with such children often come under 61 University of Ghana http://ugspace.ug.edu.gh immense pressure from their relations and communities to eliminate the children. While some bow to the pressure and part with the children, others do not (Bayat, 2015). The belief behind the killing of children with disabilities is that they are ‗spirit children‘ who ought to be ritualistically returned to the spirit world by their families (Kassah et al, 2012). Such family pressures to part with children born with disability exist because the whole family is stigmatised and looked down upon because of that single individual, to the extent that, other families hold reservations and objections about letting their kin marry from a family that carries the disability stigma (Slikker, 2009). The kind of stigma that the family suffers by virtue of their association with a person with disability is termed courtesy stigma by Goffman (1963). The fear and reluctance to associate with individuals and families of persons with disabilities emanates from the belief that the curse or witchcraft that caused the disabling condition can be contagious and afflict the associates of the persons with disabilities or his or her family (Slikker, 2009). Families, being afraid of sanctions from the gods and ancestors oblige and isolate children with disabilities (Kassah et al, 2012). The sanctions believed to occur with the failure of families to remove disabled people from their midst include sickness or infliction of parents with more children with disabilities or entire communities being punished by the deities (Kassah et al, 2012). The incidence of infanticide of children with disabilities in Ghana has, however, greatly reduced since the introduction of Christianity and formal ‗Western‘ education. Associated rituals and practices that were performed by families seeking to purge themselves from evil associations after the birth of a child with disability have diminished though not completely (Avoke, 2002). Some of the families that do not kill their children who have disabilities rather hide the children at home, religious camps or in residential special 62 University of Ghana http://ugspace.ug.edu.gh schools (Lamptey, Villeneuve, Minnes & McColl, 2015) for the fear of the stigma and in order that the families will not be shunned and ostracised by their societies. The children are denied love and affection (Attafuah, 2000; Baffoe, 2013; Naami & Hayashi, 2012). Some of these parents, being ignorant about disabilities and the capabilities of their children, refuse to send such children to school, with the erroneous belief that it would be a waste of time and money for them to do so (Slikker, 2009). Non-disabled siblings and relatives are rather given the opportunity to get formal education and sometimes, artisanal apprenticeship with the explanation that they would come to take care of the persons with disabilities (Mensah et al, 2008). The penalties and social consequences of having a disability are far reaching. Persons with disabilities in Ghana are essentially barred and disqualified from occupying major traditional social positions in their lineages and communities. Persons with disabilities are debarred from becoming chiefs. Disability is enough grounds for disqualification in consideration for ascension to chieftaincy stools and skins (Attafuah, 2000; Kassah, 2008; Nukunya 2003). The belief is that persons with disabilities carry a curse from the gods hence their impairment. It is also believed that they are unclean or unfit to occupy a position meant for unblemished people and thus unable to perform the religious functions expected of chiefs (Mensah et al, 2008). In some situations, chiefs are even forbidden by their customs and traditions to come into direct contact and shake hands with persons with disabilities or admit them into their council of elders as the disability amounts to the presence of a contamination which is to be avoided by a sacrosanct individuals such as chiefs (Avoke, 2002; Mensah et al, 2008). The disapproval of Dr Daanaa Seidu by some chiefs when he was nominated for the ministerial position is a case in point. 63 University of Ghana http://ugspace.ug.edu.gh In some instances, some families do not allow their kin to make friends with persons with disabilities (Bayat, 2015; Reynolds, 2010) or even marry from families that have some of its members having some forms of disability. The reason is that disability is enough grounds for disqualification in mate selection in some communities in Ghana (Kassah, 2008; Nukunya 2003). It is difficult for non-disabled people to be associated with persons with disabilities in such a situation, and even marry such persons (Naami & Mikey- Iddrisu, 2013). The belief is that the punishment of the gods as expressed through disability, is cross-generational and the offspring of persons with disabilities could also be born with another form of disability. Closely aligned to the superstitions, misconceptions and prejudices about disabilities are the labels that are used to refer to various kinds of disabilities in Ghana. The labels reveal the contempt that society holds for persons with disabilities and contribute to their, exclusion and their failures. Sometimes, those who are in school may drop out to avoid the pejorative labels and hostility from colleagues and teachers (Agbenyega, 2003; Naami & Hayashi, 2012; Quinn, 2007; Slikker, 2009). The pejorative labels are interestingly justified by some in the families and communities as fitting the offence for which the disability has been used as punishment by the gods (Avoke, 2002; Baffoe, 2013). The belief in religious causality of disability is, however, more pervasive in rural areas than the urban areas of Ghana because of the pervasiveness of traditional belief systems in rural areas. The prevalence of formal education and biomedical explanations to disability in urban areas mean that the religious connections to disability are fading albeit gradually (Quinn, 2007). That is not to say that progress is not happening in rural areas. It is just that the incidence of change mostly occurs in the urban areas whereas the perpetuation of oppressive social order is more likely than not to occur in the rural areas. 64 University of Ghana http://ugspace.ug.edu.gh The Social Context of Disability in Ghana Education: Over the years, several reforms have been made in the care, treatment and training of persons with disabilities. The University of Education, Winneba, a university that specialises in the training of teachers for visually impaired and hearing impaired adults and children was set up in 1992. The University of Ghana, Legon, also has the Office of Students with Special Needs (OSSN) which caters for the welfare and the academic and institutional needs of students who have disabilities. Ghana‘s Ministry of Education has a Special Education Division (SPED) which is mandated to offer special needs education to children with disabilities and inculcate in them employable skills for their economic independence (Slikker, 2009). The SPED of the Ministry manages 12 primary schools and a secondary school for the deaf in Mampong, Eastern Region and two schools for the blind, one at Wa in the Upper East Region and the other at Akropong in the Eastern Region. In addition to these, there are nine schools for children with intellectual disability located in various parts of the country. There are also three assessment centres as well as seven regional mobile centres for children who have learning difficulties and other developmental challenges. Additionally, there are 38 vocational training and rehabilitation centres in the country (Slikker, 2009). All but one of these, that is the Accra centre, train their inmates in rural crafts which are often outmoded, no longer in demand and have virtually no market. Their graduates are thus unable to compete for places in the job market (Naami, 2014; Slikker, 2009). The existence of these institutions bodes well for persons with disabilities in Ghana but the institutions are severely constrained by the lack of teaching materials, trained staff and inadequate infrastructure as well as inadequate financial resources and support (Slikker, 2009). They are unable to upgrade their training methods and equipment and 65 University of Ghana http://ugspace.ug.edu.gh modernise their programmes to make them relevant for the current job market (Naami, 2014). Persons with disabilities who train in these institutions remain functionally unemployable. Similarly, the schools lack the required resources that will enable them to function at an optimum level and also give the students the ability to compete for positions with non- disabled people within the broader society (Naami & Hayashi, 2012). The schools are in themselves overcrowded and are inadequate as many who require education do not have access to the schools (Avoke, 2001). According to Mensah et al (2008), only about 6% of persons with disabilities in Ghana have access to formal education. This is related to the high levels of poverty that characterise persons with disabilities in Ghana. Inclusive education that involves putting children with intellectual disabilities and those with other special needs in the same classrooms as non-disabled children also record little success. This is because of the negative attitudes held by some of the parents, teachers and students against persons with disabilities. The negative attitudes add to inappropriate school practices, lack of specialised training for teachers and staff to enable them work effectively with students who have impairments, the absence of appropriate infrastructure as well as the lack of provision of generic material and technical support and training services particularly to the students with disability (Agbenyega, 2007). The constraints in the education of persons with disabilities is partly as a result of the failure of policy and the inability of institutional managers to recognise the value of people, which would otherwise make them offer choices to persons with disabilities and to give them the opportunity to express themselves. Instead, the offers usually available to persons with disabilities are for training to obtain low end jobs. The fact that most persons with disabilities are given these limited opportunities is unethical, immoral or violates the 66 University of Ghana http://ugspace.ug.edu.gh fundamental rights of the individual (Avoke, 2001). There are times that opportunities exist for persons with disabilities to obtain education or be employed but the actual experience of stigma and fear of experiencing same prevents some of them from utilising the available opportunities. In some instances also, economic challenges prevent them from taking up these opportunities in schools (Kassah, 2008). The obvious reality is that the lack of appropriate structures of inclusion shunts persons with disabilities to the margins of society and prevents them from accessing educational opportunities (Fefoame, 2009). Some of the few who are able to remain in school and go through the formal education system are able to build distinguished careers but a good number fall by the wayside (Slikker, 2009). In some situations, accessing the school buildings becomes a challenge to some persons with disabilities and hence, they are discouraged from remaining in school. The issue of some parents hiding their children with disabilities is also inimical to the situation of persons with disabilities as it prevents persons with disabilities from getting education (Opoku et al, 2015). Poverty is sometimes used as an excuse by some parents and families for not educating their children and family members who have disabilities (Fefoame, 2009). In some mainstream schools, teachers and administrators are sometimes apprehensive and reluctant about admitting children with disabilities into their schools and classes (Fefoame, 2009). Some persons with disabilities who get admitted into schools also report name- calling and humiliation by colleagues and teachers. This situation makes some persons with disabilities quit school to avoid the shame and the discomfort they feel in the presence of their non-disabled peers (Mensah et al, 2008). 67 University of Ghana http://ugspace.ug.edu.gh The special schools are used by some parents as places to hide children with disability (Fefoame, 2009) in order that the shame and stigma of having such children is temporarily removed. The special schools exist because regular schools lack the adequate staff training and resources to enable them cater properly for children with disabilities. Added to this is the argument that there is the belief that children with disabilities will be exposed to ridicule and negative treatments from non-disabled children and teachers. Some parents outrightly refuse to allow their children to be in the same class as children with disabilities (Slikker, 2009). The siting of special schools is another way in which society stigmatises persons with disabilities in Ghana. Most special schools are situated far away from town in what has been termed as the ―Not in my back yard – NIMBY‖ phenomenon (Avoke, 2001; Link & Phelan, 2001). Communities are often reluctant to allow for special schools to be put up so close to home in order that they will avoid the supposed social pollution that characterises disability. The communities within which these special schools or hospitals are to be located often agree only if the facilities are put up on the outskirts of the communities with the belief that if they are allowed to come too close to the communities, some members of the community will develop similar disabilities (Agbenyega, 2003; Avoke, 2001). This trend appears, however, to be changing. The Dzorwulu Special School, Akropong School for the Blind and the Sekondi School for the Deaf are some special schools that are situated in completely built up settlements. More special schools are being cited very close to settlements or within settlements in a sign that the ‗NIMBY‘ phenomenon is gradually declining. A number of private special schools such as the Multikids Inclusive Academy, New Horizon Special School and Reyo Paddock Special School have also been established across the country and they are filling in where they state is falling short. These private 68 University of Ghana http://ugspace.ug.edu.gh schools mostly have benefactors who reside abroad or support from non-governmental organisations and they are contributing immensely towards the education of children with disabilities. Health: The healthcare system in Ghana is poorly equipped and staffed to meet the needs of persons with disabilities in Ghana (HRW, 2012; Picton, 2011). There are only a few specialised health facilities with the requisite equipment and trained staff available to attend to the needs of persons with disabilities. Health professionals are often reluctant to specialise in the care of persons with disabilities because of the stigma that comes with association with persons with disabilities (HRW, 2012). The few facilities that exist in the country are overburdened with persons with disabilities. A number of hospitals and health facilities in Ghana are not disability friendly. Beds that are used for medical examinations are often too high making it difficult for some persons with disabilities to climb. Toilets and bathrooms are also designed only with the non-disabled in mind (Mensah et al, 2008). These are barriers that limit the functional accessibility of such hospitals. The National Health Insurance Scheme (NHIS) which is the nation‘s largest health programme does not provide specifically for the needs of persons with disabilities. Persons with disabilities are only able to access free medical care if they are classified as poor and indigent (Mensah et al, 2008). Poverty is also a major reason why persons with disabilities find it difficult in accessing healthcare beyond the basic care and assistance covered by the NHIS (Naami & Hayashi, 2011). Poor persons with disabilities are unable to acquire sophisticated equipment or pay for surgeries which may increase their functionality. Even though the legislations and policies make provision for persons with disabilities to receive free medical care, the flaws in the system makes that non-existent (Slikker, 2009). 69 University of Ghana http://ugspace.ug.edu.gh Physical Environment and Transportation: Some of the challenges of persons with disabilities in Ghana presently include the difficulty in accessing appropriate transportation and the challenge of inaccessible buildings including state-owned buildings. Architectural designs are hardly sensitive to persons with disabilities (Naami et al, 2012). With the exception of ramps that appear to have become a common feature of new buildings, toilets are often poorly designed and elevators are often absent. Some of the ramps are also very steep or too narrow to allow for easy movement. Some of the ramps are also tiled and are have smooth surfaces. Considering the fact that wheelchair users need enough friction to allow for upward movement, those ramps are hardly useful. The difficulties in reaching facilities in the buildings such as toilets, offices and libraries still exist (Naami & Hayashi, 2011; Naami, 2015). The needs and interests of persons with disabilities are often overlooked and are not incorporated into the design and construction of the built environment (Opoku et al, 2015). Sometimes, accessibility facilities are provided after the entire building has been completed. The needs of persons with disabilities thus become an afterthought. The built environment is also problematic. There are several open drains in Ghana and this is a challenge to persons with disabilities who as a result need to depend on assistance to move freely in town and in the city centres. There appears to be very little regard and support for white cane and wheelchair users, particularly when they get to road crossings (Mensah, et al, 2009). They are often ignored, a situation which poses serious risk to persons with disabilities as pedestrians and road users. Persons with disabilities experience a lot of discrimination in their quest to access transportation services. Commercial vehicles in Ghana do not have suitable seats for persons with disabilities and drivers are often reluctant to pick persons with disabilities as 70 University of Ghana http://ugspace.ug.edu.gh passengers because of what the drivers consider to be delays in embarking and disembarking (Mensah, et al, 2008). The pedestrian walkways in the major cities and towns in Ghana have all been taken over by hawkers, traders and street vendors and that makes it impossible for persons with disabilities to engage in the jostling and shoving required that one requires to in order to move through town (Mensah, et al, 2009). The Economic Context of Disability in Ghana The non-availability of appropriate mechanisms and structures that will enable persons with disabilities in Ghana to access opportunities to gain employment and earn decent income remains one of the foremost problems for persons with disability (Fefoame, 2009). A number of persons with disabilities in Ghana are unable to acquire quality education as a result of the superstitions and prejudices held against them. The outcome is that persons with disabilities have limited employable skills (Botts & Owusu, 2013; Mensah et al, 2008). They end up living at the mercy of their family and friends and have a low quality of life (Kassah, 1998). The employment rate of persons with disabilities in Ghana is significantly lower than that of the general population and persons with disabilities are more likely to work in the informal sector than the formal sector of the economy (Mensah et al, 2008; Naami, 2015; UNDP, 2007). There are several persons with disabilities who have the requisite qualifications for jobs which they may apply for but they do not get the positions. This is because a number of employers either doubt the abilities of the persons with disabilities and their capacity to work or are reluctant to accommodate persons with disabilities due to the existence of negative perceptions and attitudes about disability as well as socio- cultural factors that ultimately make them unemployable (Mensah et al, 2008; Naami & 71 University of Ghana http://ugspace.ug.edu.gh Mikey-Iddrisu, 2013; Slikker, 2009). Added to this is the constraint of inaccessible buildings and potential employers‘ unwillingness to take up any cost because of the need for rearrangement of places of work and the provision of support equipment and materials if persons with disabilities are employed (Naami et al, 2012). Persons with disabilities in Ghana who are able to secure employment continue to face constraints in their line of work, a situation which calls into question commitments made towards employment creation for persons with disabilities (Picton, 2011). They mostly work in entry-level positions which require minimal skills, and sometimes, not their entire skillset. Person with disabilities have only limited opportunities to earn promotions or rise up the corporate ladder to managerial positions. Also, they earn significantly less than non-disabled people even when their job specifications are the same and that amounts to discrimination (Naami, 2015; Slikker, 2009). Complaints about persons with disabilities from clients and customers of establishments which have employed persons with disabilities have been identified as possible reasons why some employers in Ghana terminate the appointment of persons with disabilities or are reluctant to employ them in the first place as they seek not to displease their clients and customers (Slikker, 2009). When persons with disabilities are unable to get decent employment, they mostly resort to begging and petty trading on the streets. For most of them, that becomes their only chance of earning an income and making a living. Those who do not end up on the streets as beggars suffer numerous economic challenges as they struggle to make ends meet. The decision to go into begging is also from their inability to cope with challenges at their places of work, fear of customers‘ negative reactions to their disability and the rejection by their families because of the stigma they carry (Botts & Owusu, 2013; Kassah, 2005; Naami, 2011). Persons with disabilities‘ presence on the street further reinforce the 72 University of Ghana http://ugspace.ug.edu.gh negative perceptions that people have about persons with disabilities and their capacity to work (Slikker, 2009). They are seen as weak and unemployable. The incidence of underemployment and unemployment of persons with disabilities remains high in Ghana, making persons with disabilities some of the poorest people in the country (Mensah et al, 2008; Naami, 2015). The stigma and the discrimination which these factors breed thus become the predicament of persons with disabilities in Ghana and a barrier to participating fully in the world of work. Some persons with disabilities believe that finding employment will help them avoid the dependence on others for support and earn them respect and recognition from those who would otherwise look down on them (Naami, 2011; Naami, 2015; Nepveux, 2006). Persons with disabilities have difficulties in accessing loans and credit facilities from banks and financial service providers because they are perceived to be high risk clients who are not thought to be credit worthy. They are not seen as people who are capable of working to pay back the loans (Naami, 2014). The demands of collateral that are made on a number of persons with disabilities are usually beyond them, thereby making it impossible for them to set up small scale businesses. Those who are fortunate to access the loan facilities have difficulties repaying because their start-ups are severely constrained by social norms that inhibit persons with disabilities (Mensah et al, 2008; Naami, 2014). Some people refuse to buy from persons with disabilities or engage in any form of economic transaction with them all because of the beliefs that people hold about persons with disabilities. The state has attempted to mitigate against the economic challenges that persons with disabilities face in Ghana. These include provision for persons with disabilities to access 73 University of Ghana http://ugspace.ug.edu.gh part of the District Assembly Common Fund (DACF). Persons with disabilities under the jurisdiction of each Metropolitan/Municipality/District Assemblies (MMDAs) are expected to be allocated 2% of the DACF. This initiative was started in 2005 (Mensah et al, 2008; NCPD/GFD, 2010). The funds for persons with disabilities are, according to the National Council on Persons with Disability (NCPD), supposed to be used for advocacy/awareness raising on the rights and responsibilities of persons with disabilities, strengthening of organisations of persons with persons with disabilities, training in employable skills and apprenticeship, income generation activities as input and working capital, educational support for children, students and trainees with disability and the provision of technical aids, assistive devices, equipment and registration of National Health Insurance Scheme. Despite the availability of the DACF fund for persons with disabilities, several persons with disabilities are unable to access the funds because the funds are often not released on time by the Central Government and when the funds are released, they usually come in bits, making it difficult for the MMDAs to meet all their needs. The MMDAs are often seen as not prioritising the needs of persons with disabilities and these factors compromise the distribution of the funds (Mensah et al, 2008). Part of the funds meant for the persons with disabilities are used to pay the sitting allowance for the fund managers and administrative costs, thereby reducing the funds available to be shared to beneficiary groups and individuals (NCPD/GFD, 2010). Several persons with disabilities are not even aware that they are entitled to a portion of the DACF (Picton, 2011) and some of those who are aware decline to access the funds. Those who are able to access do not receive much and the allocation is nothing short of a symbolic gesture or token to give a semblance of concern and care. 74 University of Ghana http://ugspace.ug.edu.gh The Gender Relations Context of Disability in Ghana The interaction between disability and gender often leads to multiple disadvantages and discrimination towards women with disabilities due to the interplay between sexism and disablism as situated in the cultural beliefs and practices of Ghanaian communities (Bourgeois, 2011; Naami & Hayashi, 2011; Naami, 2015; Naami et al, 2012; Slikker, 2009). For women with disabilities, these occur against the backdrop of high levels of poverty among persons with disabilities in Ghana (Naami & Hayashi, 2011; Naami, 2014). The stigma and the ensuing discrimination and prejudice that such women face occur at the individual level, within their households and at the community level and is often greater than the experiences of men with disabilities (UNDP, 2007). The gender experiences of disability manifest itself in so many ways. Women with disabilities receive fewer years of schooling than men with disabilities and non-disabled women (Nepveux, 2006) and are also less likely to be employed than the men. If employed, women with disabilities are more likely to receive lower pay and are underrepresented in official and senior managerial positions. The women with disabilities who are employed are mostly found in sales, clerical and service worker positions even though men are overrepresented in these areas and more likely to be in senior positions. In addition to these, the women have limited economic resources at their disposal and have limited access to information (Naami, 2015; Naami et al, 2012). Even though women with disability would want the opportunity to work and take up appropriate gender roles, several institutional, physical, and attitudinal barriers prevent them from doing so (Nepveux, 2006). Their survival therefore becomes dependent on their families and friends with others taking to menial jobs or begging as a means of survival (Naami et al, 2012). When women become disabled early in their lives, they are often not given the training 75 University of Ghana http://ugspace.ug.edu.gh and skills required to manage a household or a small-scale business, as is given other non- disabled women (Nepveux, 2006). They are thus stripped of part of their social identities. Women with disabilities in Ghana are also more vulnerable to neglect, various forms of abuse and sexual exploitation. They are less likely to marry than non-disabled women and men with disabilities and they are highly vulnerable to divorce when compared with non- disabled women and disabled men. People have the fear that women who have disabilities would also give birth to children with disabilities because of the erroneous belief that disability is inherited through the maternal line. As a result, a man with disability can easily marry, should he have a good job and a decent income, but that may not be the case for a woman with disability (Slikker, 2009). Quite often, women with disabilities end up as single mothers when their partners abandon them especially after they become pregnant. People are hardly encouraged by their families to marry persons with disabilities and this is true for both men and women. This happens because of cultural beliefs and myths which hinder marrying persons with disabilities. In some situations, there is vicious opposition to any such interest (Mensah et al, 2008; Nepveux, 2006; Slikker, 2009). Some marriages also breakdown when one of the partners becomes disabled (Attafuah, 2000; Slikker, 2009). Men are, however, more likely to leave their partners, rather than women. Some husbands also leave their wives after the birth of a child with disability (Slikker, 2009). Women with disabilities are also perceived to be asexual, unable to procreate or raise children, incapable of performing traditional roles of women or good enough for romantic relationships. These happen even when women with disabilities have tried to assert themselves and claim their entitlements to inheritance, freedom of mobility and freedom from exploitation and abuse (Bourgeois, 2011; Naami, 2011; Nepveux, 2006). 76 University of Ghana http://ugspace.ug.edu.gh Ultimately, there are substantial social and economic barriers that work against particularly low-income women with disabilities in their quest to seek healthcare and acquire mobility aids (Nepveux, 2006). The challenges of women that have been mentioned is not to say that men with disabilities are favoured across various social spaces, but rather that, women with disabilities suffer greater oppression and stigma than men with disability in Ghana. The Legal and Policy Environment of Disability in Ghana Ghana has ratified a number of international treaties on disability rights and has enacted the Persons with Disability Act to protect the rights of persons with disabilities and enable them to enter into mainstream employment and education (Anthony, 2011; Kassah, 2008). The laws are meant to protect the rights of persons with disabilities, promote their welfare and ensure that persons with disabilities are able to participate actively in society. The Persons with Disability Act 2006 (Act 715) was passed in 2006. The Act guarantees persons with disabilities access to public buildings, free and general medical care, education, employment and transportation. The commitment and responsibilities of service providers are also regulated by the Act (Picton, 2011). The Act also provides for the establishment of the National Council on Persons with Disability (NCPD) which is to oversee the compliance with the Act and also propose strategies that will enhance the integration of persons with disabilities into national development (Mensah et al, 2008). The Council was established in 2009 (Baffoe, 2013). The Disability Act made provision for a ten-year moratorium to allow for full compliance with the provisions of the Act. That moratorium elapsed in August 2016 but full compliance with provisions in the Act is yet to be attained. The implementation of the Act has been woeful and some aspects of the Act 77 University of Ghana http://ugspace.ug.edu.gh are largely relevant only on the papers on which they are written (Baffoe, 2013; Naami & Hayashi, 2011; Picton, 2011). In addition to the Disability Act, there is the Mental Health Act 2012 (Act 846) that also caters for rights of people with mental health challenges. Beyond these two Acts, there are sections in the 1992 Constitution of the Republic of Ghana, Education Act 2008 (Act 778), Children‘s Act 1998 (Act 560), Labour Act 2003 (Act 615) and other subsidiary legislations and policies that are oriented towards the protection of the rights of persons with disabilities in Ghana (Lamptey et al, 2015). Full implementation of the Disability Act has, however, not been realised and as a result, the social conditions that the law was promulgated to correct still exist. The Legislative Instrument of the Disability Act which is needed to make the Act absolutely enforceable is yet to be passed. This means that the Disability Act is yet to become fully operational (Sackey 2015; Tudzi, Bugri & Danso, 2017). Persons with disabilities, therefore, continue to experience difficulties in their quest to secure full participation in the social, economic and political systems of the society. They still remain on the fringes of social, economic and political interaction. Even though Ghana has made a good attempt at protecting the rights of persons with disabilities, the laws meant to do that have structural weaknesses that are inimical to the attainment of that objective. Disability per Ghana‘s legislations is defined along the individual/medical model. In article 59 of the Persons with Disability Act 2006, a person with disability is: …an individual with a physical, mental or sensory impairment including a visual, hearing or speech functional disability which gives rise to physical, cultural or social barriers that substantially limits one more of the major life activities of that individual. (Persons with Disability Act 2006, Act 715) 78 University of Ghana http://ugspace.ug.edu.gh This definition represents a fundamental failure to recognise the fact that beyond the existence of the impairment, aspects of the society ought to be changed to accommodate the needs of persons with disabilities rather than seeking individual adjustment of the persons with disabilities (Lamptey et al, 2015). For instance, the Persons with Disability Act of 2006 recognises the essence in confronting and eliminating discrimination against persons with disabilities but unfortunately, the Act does not make provision for public education about disability matters (Naami et al, 2012). Education is needed as an informed society will learn to curtail and eliminate abusive, exploitative and stigmatising treatments of persons with disabilities. Ghana‘s legislations on disability are sometimes at variance with international legislations such as the UN Convention on the Rights of Persons with disabilities (CRPD) to which Ghana is a signatory. Several aspects of Ghana‘s legislation on disability either condone the oppression and abuse of persons with disabilities or lack the strength to limit the abusive treatments of persons with disabilities (HRW, 2012). For instance, Article 14(2) of the disability Act states that: A rehabilitation centre shall offer guidance, counselling and appropriate training for persons with disability who are unable to enter into the mainstream of social life. (Persons with Disability Act 2006, Act 715) This provision in the Act basically means that the Act will not necessarily correct the inability of persons with disabilities to enter into mainstream social life but it will rather provide for alternative places of social endeavour, should the mainstream reject them. Article 19 of the Act also states that: Where a person with disability has completed basic education but is unable to pursue further formal education, the Ministry shall provide the person with appropriate training. (Persons with Disability Act 2006, Act 715) 79 University of Ghana http://ugspace.ug.edu.gh The Act does not address the reasons why persons with disabilities may be unable to pursue further formal education but rather provides for ‗appropriate training‘. Implicit in these two provisions cited is the tacit belief that persons with disabilities would be accorded alternative social lives should they be rejected by the mainstream social life. Invariably, the very thing the Act is to correct is reinforced by the same Act. The Act in its entirety appears to be more focussed on the entitlements that persons with disabilities ought to be given. The Act does not address the changes that ought to be made in the broader society through attitude change and mass education on the rights of persons with disabilities. Several other provisions in the Act including Articles 15, 22, 38 and 39 have the phrase “as far as practicable‖ embedded in them. This only serves to open doors for people to subjectively determining the extent to which they can go to provide for the needs and welfare of persons with disabilities. The Act does not make a specific determination on what ought to be provided and what ought to be done for persons with disabilities. There are also some ambiguities in a number of the provisions of the Act (Naami, 2015). The Act, for instance, mandates the Ministry of Health to provide free specialist treatment for persons with disabilities who have total disabilities. There are some persons with disabilities who though do not have total disabilities, may be in need of specialist care that they cannot afford. The Act thus excludes such people from the free medical care (Mensah et al, 2008). The Act also provides for what the living conditions of persons with disabilities who are in specialised establishments should be but evidence reveals a massive flouting of the Act without consequence. The conditions under which inmates of specialised institutions live are as dehumanising as it could be anywhere else in the community (HRW, 2012). Public buildings remain largely inaccessible (Mensah et al, 2008) and government‘s 80 University of Ghana http://ugspace.ug.edu.gh responsibility to train and deploy jobless persons with disabilities who seek to be employed is hardly being met. The Act requires the state to provide guidance and counselling at rehabilitation centres. A good number of persons with disabilities hardly benefit from these initiatives and some of those who access these specialised services do so at a cost to themselves and their families. Educational needs which are supposed to be met by the state are largely unmet. The Act requires that medical and health professionals are trained in disability related issues in order to improve healthcare of persons with disabilities but that remains to be done as the curricula of training schools for health professional does not include disability issues (Mensah, et al, 2008). All these mean that several provisions of the Act remain irrelevant for persons with disabilities in Ghana because the change it is to bring is non-existent. Ghana has the Ministry of Gender, Children and Social Protection which has been established to formulate, coordinate, monitor and evaluate national policies on gender, children and vulnerable groups of persons. The Ministry, as part of its mandate, is required to facilitate the integration of vulnerable groups and marginalised people such as persons with disabilities into full social participation. In addition to this, the Ministry is also expected to promote and protect the rights of these vulnerable persons through awareness creation and targeted interventions. Within the Ministry is the National Council on Persons with Disability (NCPD), an agency that was established by the Disability Act to lead the Ministry and government‘s efforts at upholding the rights of persons with disabilities and ensuring that persons with disabilities have equal access to opportunities in the society. There are several organisations in Ghana that advocate for the rights of persons with disabilities such as Ghana Federation of the Disabled (GFD), The Ghana Association of 81 University of Ghana http://ugspace.ug.edu.gh the Blind (GAB), The Ghana Society of the Physically Disabled (GSPD) and the Ghana National Association of the Deaf (GNAD). There are several other civil society groups and organisations that are also actively involved in the advocacy of disability rights (Mensah et al (2008). Most of these civil society and advocacy groups are, however, active in the urban areas. Majority of persons with disabilities in Ghana, however, live in rural areas and lack the protection that civil society and advocacy groups offer to persons with disabilities especially in the urban areas (Kassah, 1998). The rural persons with disabilities are some of the poorest and most vulnerable persons with disabilities in Ghana (Tuakli, Miller, Agyarko-Kwarteng & Jones, 2006). The challenge, however, is that the disability movement in Ghana is weak and fragmented. There is a seeming lack of cooperation and duplication among the organisations of persons with disabilities and between the organisations of persons with disabilities and the other civil society groups. This is particularly problematic given that the organisations of persons with disabilities as separate bodies lack the resources and logistics to function effectively. For that reason, the disability movement in Ghana does not have the capacity to confront the stigmatisation and the discrimination that persons with disabilities experience in their daily lives in society (Mensah et al, 2008; Slikker, 2009). The lack of political will on the part of government to enforce pro-inclusion laws and to commit resources to meeting the needs of persons with disabilities continues to inhibit the progress being made by persons with disabilities in Ghana and adds to their exclusion and vulnerability (Botts & Owusu, 2013; Fefoame, 2009; Mensah et al, 2008). Invariably, persons with disabilities in Ghana have rights but their rights are not the same as those of the non-disabled population of the country (Reynolds, 2010). The stigma that is attached 82 University of Ghana http://ugspace.ug.edu.gh to disability continues to remain the key determinant of the life chances of persons with disabilities in Ghana. Progressive Handling of Disability in Ghana Modernisation has indeed diminished some of the cultural beliefs and practices that oppressed persons with disabilities in Ghana. Economic opportunities are appearing gradually and more persons with disabilities appear to be getting formal education to the highest levels as well as support from institutions. More families are showing signs of acceptance of their relations who have disabilities and giving them the support and care that they require. This is happening not just in the urban areas but also in the rural areas (Quinn, 2007). Stronger social support systems are emerging and while these changes are slow, they represent the beginnings of a gradual transition from the state where social norms and stigma demean persons with disabilities to a future where persons with disabilities would participate in mainstream social, political and economic activities without any hindrance. The pace of progress, however, makes it seem that that future is distant rather than close. In the face of all the challenges that persons with disabilities face in Ghana, some happenings in the past few years point to the direction of progress in how disability is handled in the country. Dr Daanaa‘s nomination and appointment as Chieftaincy Minister and Ivor Greenstreet‘s election as the presidential candidate of the CPP for the 2016 general elections are signs that traditional nooses that hold disability in Ghana are being loosened (Naami & Mikey-Iddrisu, 2013). The incidence of infanticide has gone down as more parents and communities become more informed about disabilities and a lot more accommodating to persons with disabilities (Avoke, 2002). 83 University of Ghana http://ugspace.ug.edu.gh The traditional beliefs that forbade chiefs to associate with persons with disabilities also appear to be on the decline. A number of chiefs have publicly interacted directly with persons with disabilities in a bid to confront the stigmatising beliefs and also to usher in a new conceptualisation of disability. This appears to be an outcome of the constitutional provision that enjoins the National House of Chiefs to evaluate customary practices and abolish socially harmful ones (Mensah et al, 2008) and the politico-intellectual gravitation towards acceptance of oppressed people. Even though chiefs are becoming more accommodating, it will be a while before persons with disabilities occupy major stools or skins in Ghana as chiefs, Queen mothers and traditional rulers. Summary Stigma, when considered as a social process and the outcome of that process is a function of culture, power and difference. Power is at the core of that social process and the structures built around those social processes prevent persons with disabilities from integrating into society fully whiles legitimising the inequalities of statuses with communities (Parker & Aggleton, 2003). Numerous social, architectural and institutional barriers continue to oppress persons with disabilities in Ghana and deny them access to resources and opportunities available to non-disabled people. Any attempt at reversing the stigma should be aimed at altering the supportive norms and ideas that justify the differential treatment of people on the basis of their bodily attributes. Despite the progress made so far, it is necessary that mass education about disabilities is conducted in the country to help allay some of the fears that people harbour about disabilities. Traditions and spiritual beliefs are to be respected but not to the extent that they become injurious to other human beings. The government through its relevant ministries and agencies ought to do more by enforcing the Disability and Mental Health 84 University of Ghana http://ugspace.ug.edu.gh Acts and other pro-inclusion provisions in other legislations in order to enhance the understanding of disability, improve the acceptance of persons with disabilities and their families and also to eliminate the stigma and the related discrimination against persons with disabilities. 85 University of Ghana http://ugspace.ug.edu.gh CHAPTER FOUR RESEARCH METHODS Introduction This chapter details the processes undertaken in the conduct of this study. These include the rationale for the use of the qualitative research approach, the research design, the determination of sample size, the sampling technique used for this study, the process of entering the field and the profiles of the participants for the study. The chapter also presents the data collection process, the ethical issues relating to the conduct of this study and data storage and management activities. In addition to these, matters relating to my positionality as a non-disabled researcher researching into lived experiences of persons with disability are also presented. The method of data analysis as well as quality control and assurance measures that were used in order to ensure validity, reliability and rigour in the analysis and findings of the study as well as an autobiographical reflection are also presented in the chapter. Rationale for the Use of a Qualitative Research Approach Qualitative approaches to research strive for an understanding of particular phenomenon from the perspective of the people who experience the phenomenon in question and the meanings they give to such experiences (Flick, 2014). This is crucial because of the need to obtain rich, in-depth and compelling insights into the worldview, experiences and perspectives of research participants (Creswell, 2009; Flick, 2014; Neuman, 2007; Yin, 2011). Similarly, Mack, Woodsong, Guest & Namey (2005) state that, qualitative research seeks to understand a research problem from the perspective of the population that the study involves because as a scientific method of enquiry, it is particularly useful in 86 University of Ghana http://ugspace.ug.edu.gh eliciting culturally specific information from social contexts of individuals and groups of people and also useful in identifying intangible factors such as social norms, socioeconomic factors, gender roles, ethnicity and religion, all of which contribute to and shape the experiences of the participants. Qualitative approach is preferred in this study because it allowed me to hear the voices of the people who I wanted to study. Indeed, some of the voices appeared to be silenced, marginalised or ignored and this study was an opportunity for them to be heard. For some of the participants, they were being heard again and for some, they had never really had the opportunity to speak about their stigmatising experiences and so this was a new opportunity. The voices gave me a good and complex understanding of the myriads of contexts within which persons with disabilities experience stigma and how the experiences occur, all from their perspective as they shared their stories with me (Creswell, 2013). The qualitative approach enabled me to develop a good and informal relationship with the participants and this offered me the opportunity to probe further into their responses as they answered the questions I asked. The participants were also at ease with the questions I asked them. I was able to probe into matters that border on very intimate aspects of their lives without trouble or hindrance. Participants also answered elaborately and sometimes gave greater details than I initially thought I would be able to obtain (Mack et al, 2005). Sometimes, the participants even encouraged me not to hold back but that I could ask any question and that they were more than willing to respond. Given also that the qualitative approach allows for greater spontaneity and adaptation on interaction between researcher and participant (Mack et al, 2005), I was afforded the opportunity to ask open-ended questions bearing in mind that each participant was different. Though I had core issues and questions I wanted to discuss with each of the 87 University of Ghana http://ugspace.ug.edu.gh participants, no two participants ended up answering the same set of questions. The interviews were highly adaptive and the questions asked were not leading questions. Rather, they were couched not to elicit monosyllabic nor generic responses from the participants (Brinkmann & Kvale, 2015; Mack, et al, 2005). Creswell (2009) posits that data collection in qualitative research ought to be done at the site where the participants of the study experience the issue or social matter that is being studied. Participants are not drawn into a controlled laboratory setting for the purposes of the research and discharged afterwards, neither are the participants sent instruments for them to answer but rather, the researcher goes up close physically to the spaces where the participants live their daily lives and have their everyday experiences. The face to face interactions that I had with the participants in their homes and offices allowed me to see how the participants behave and act in their immediate surroundings and that formed part of the rich text that fed into the study. I conducted all the interviews for this study by myself and it was important that I did so because not only did I rely on the interviews as data for this study. I also had the benefit of observing and hearing the participants interact with their family relations, friends, neighbours and work colleagues. The information gathered from these situations also contributed to the data I gathered from my interactions with the participants. Research design The study was phenomenological in its approach (Heidegger, 1962). According to Creswell (2013, p. 76), a phenomenological study ―describes the meaning for several individuals of their lived experiences of a concept or a phenomenon.‖ In this way, the researcher reduces the experiences of the individuals, that is, the research participants, to 88 University of Ghana http://ugspace.ug.edu.gh the central themes or meanings that constitute the essence of their lived experiences. Phenomenology can therefore be seen as an interpretive process in which the researcher carefully describes, interprets and analyses the conscious experiences of research participants as a means of understanding their reality or how they perceive it to be (Bhattacherjee, 2012; Brinkmann & Kvale, 2015; Bryman, 2016; Creswell, 2013; Flick, 2014; Heidegger, 1962). Phenomenological studies are also explained by Yin (2011) as not just focussing on the central phenomenon being studied but also on the political, historical, and sociocultural contexts within which the phenomenon and the experiences occur. The focus on the contexts is important in the sense that, the experiences of the participants do not occur in isolation but rather, the experiences occur in social interactions that are situated in these contexts, thereby making it impossible to separate the contexts from the people and their experiences. Phenomenology as an approach in interpretivist research emerged within the work of Edmund Husserl, a German mathematician and philosopher (Reiners, 2012; Savin-Baden & Major, 2013; Smith, Flowers & Larkin, 2009). Husserl believed that the use of objective scientific methods in the study of human lives and social phenomenon was a misnomer. Instead, he advocated for the use of methods that could be used to examine the experiences of people as they occur in their encounters within the social and physical worlds (Husserl, 1964). The study of such experiences could lead to the identification of the essential features and qualities of the experiences which as he argued, would transcend particular circumstances in terms of its appearance and also provide insight into other people‘s experiences (Smith et al, 2009). To Husserl, being able to do this requires a suspension of all suppositions held by the researcher and focussing only on the phenomenon of interest in its own right (Reiners, 2012). This involves moving outside of 89 University of Ghana http://ugspace.ug.edu.gh everyday experiences in order to examine that experience. By this approach, known as bracketing, everyday conscious experiences could be described while pre-existing thoughts, opinions and values are set aside or bracketed (Reiners, 2012, Savin-Baden & Major, 2013; Smith et al, 2009). Martin Heidegger, a student of Husserl, developed a variant of phenomenology. Heidegger‘ phenomenology focusses on the meanings that individuals have about their experiences (Heidegger, 1962). The situated meaning that individuals have of their experiences comes out of human understanding, which is in itself dependent on historical, cultural and social contexts of the experience (Savin-Baden & Major, 2013). For Heidegger, the focus of phenomenological studies had to be the interpretations of human experiences and consciousness and as they occur within their relational contexts (Heidegger, 1962). In comparing Husserl‘s phenomenology with Heidegger‘s, the starting point is similar. Both argue that human experience and consciousness ought to be studied. However, variations occur in the aspects of the experience to be studied, methods of study and how the experiences should be analysed (Savin-Baden & Major, 2013). Husserl‘s phenomenology begins with pre-reflection of the phenomenon in question by bracketing off the social world and not allowing existing knowledge to obstruct a proper understanding of the phenomenon. To him, it is by bracketing off the existing knowledge that the researcher becomes aware of possible biases in order that the biases would not disrupt the knowledge of the nature of the phenomenon. Heidegger was of the opinion that it was not possible to separate the person and the experience because they coexist within the same context. One‘s background influences how they perceive their social and physical world and the meanings that these have for them. Essentially, bracketing to 90 University of Ghana http://ugspace.ug.edu.gh Heidegger was impossible because it was impossible for anyone to stand or exist outside his or her own experience (Heidegger, 1962). With respects to their methods, Husserl‘s position was that researchers had to accurately describe the experience, identifying the social process that orient the occurrence of the experience, without allowing any pre- existing conceptualisations to interfere with the facts as known from the experience. Heidegger believed that the researcher had to pursue an understanding of the experience beyond knowledge and description of the experience by dwelling on changing meanings and contexts and what these mean for the people who experience the phenomenon and the society (Savin-Baden & Major, 2013). Ultimately, Husserl was interested in identifying and understanding the phenomenon of interest. Heidegger, on the other hand, was interested in what the experiences meant for those who had experienced them. These two types of phenomenology have since been conceptualised as transcendental (also empirical or psychological) phenomenology (Husserl‘s phenomenology) and hermeneutic phenomenology (Heidegger‘s phenomenology) (Creswell, 2013; Savin-Baden & Major, 2013; Smith et al, 2009). Creswell (2013) explains transcendental phenomenology as being focussed more on the descriptions of the lived experiences of research participants and less on the interpretations of these experiences. Hermeneutic phenomenology involves the interpretation of the participants‘ lived experiences. The phenomenon is first identified in the lives of the participants and then upon critical reflection, the essential themes that constitute the nature of the participants‘ lived experiences are also identified. This study is a hermeneutical phenomenological research project. The hermeneutical phenomenological approach to research involves the identification of a human phenomenon as expressed in the individuals‘ lived experiences, describing and interpreting these experiences and the essence of that experience for all the individuals 91 University of Ghana http://ugspace.ug.edu.gh whose experiences are being studied (Adams & van Manen, 2008; Creswell, 2013). In this study, I am not just interested in identifying and describing the experiences of the participants. I was also interested in developing a deeper understanding of what their experiences mean for their daily social, economic, political, cultural and religious lives within the various contexts of their lives, particularly those within which the phenomenon of interest, that is, the stigma of disability and its related experiences occur. Phenomenology focusses on a phenomenon, the central concept in focus that has been experienced by the participants (Creswell, 2013). For the purposes of this study, the phenomenon that is the central concept was stigmatisation as experienced by persons with disability. I am interested in studying how middle-class persons with disabilities represent and interpret their experiences of stigma. The description and interpretation done in this study were of stories from the lived conscious everyday experiences told by people with disabilities of the stigma they encounter in their daily lives and what the stigma means to them in their interactions with others in their homes, places of work, school and religious spaces. The stigmatising experiences were told by middle-class people with disabilities themselves. As an interpretivist study, my interest is to uncover what Berg (2001) describes as the ‗telos’, that is, in the context of this study, the essence of the accounts of stigma as experienced by persons with disability and with this comes the development of a practical basis for understanding such meanings as the patterns of human activity are action uncovered. Rational for the Choice of Hermeneutic Phenomenology Ajjawi and Higgs (2007, p. 614) posit that hermeneutic phenomenology, as an interpretive research paradigm, recognises the fact that ―meanings are constructed by human beings in unique ways, depending on their context and personal frames of reference as they engage 92 University of Ghana http://ugspace.ug.edu.gh with the world they are interpreting.‖ By this, they meant that dynamic, relative and complex dimensions of human experiences are best studied using approaches that allow for the generation of new meanings and understanding from multidimensional experiences within the participants‘ personal and social contexts (Ajjawi & Higgs, 2007). According to Penner and McClement (2008), lived experiences of individuals are influenced by internal and external factors, factors that come together to provide the meanings of a phenomenon to an individual. Consistent with this approach, I was not interested in identifying the causes of the participants‘ experiences of stigma. Rather, I sought to establish and clarify the meanings that the participants have for their experiences of the stigma of disability and doing so required that I chose an interpretive framework that allowed me to do this (Penner & McClement, 2008). I chose this approach because inherent in it is the argument that the lived experiences of people are created out of personal characteristics as well as situational factors. This position is consistent with the social relational model of disability, the framework through which I conceptualise the experience of disability in this study. Additionally, phenomenology also requires the recognition of individuals‘ emotions, thoughts and actions as critical factors in the construction of what lived experiences are. These also concur with the Psycho-emotional dimension of disability. In this study, I was also interested in how middle-class persons with disabilities feel and think about their experiences. It becomes apparent then, that there is convergence between the social relational model of disability as my framework for assessing the experience of disability, and my choice of hermeneutic phenomenology as the research paradigm. In both models, the experiences of people, including unique and shared, particular and universalistic are all of interest (van Manen, 1997). In light of all of these factors, the determination and 93 University of Ghana http://ugspace.ug.edu.gh selection of sample, the data gathering process and method of data analysis all reflected the theoretical positions of hermeneutic phenomenology as the research design. Study Population, Sample Size and Sampling Technique The population of the study was middle-class people with disabilities in Ghana whose impairments may be described as sensory and/or physical. People with disabilities in this category were selected for the study because they have the capacity to construct the realities of their lived experiences. People with disabilities whose conditions are in the range of mental and intellectual disabilities may not be in a position to construct the realities of their daily lived experiences and may not be in the position to give a conscious account of their stigmatising experiences. That is why they are not included in the sample for this study. The sample for the study is middle-class people with disabilities who have sensory and or physical/mobility challenges who were identified across the length and breadth of the country. Effort was made to ensure that the participants selected for the study were not concentrated in a particular geographical region of the country. The participants shared experiences from all the 10 regions of the country. Care was taken in order that people with disabilities across the spectrum were chosen to fill the categories of participants being sought. The middle-class persons with disabilities were chosen bearing in mind variables such as types of disability, age at onset of disability, gender, class, religion, age and location. These identity markers created a wide spectrum of persons with disabilities with multiple intersecting identities and statuses who were qualified to be enrolled as participants in this study. This allowed for the experiences of persons with disabilities to be examined broadly in this study. This was to ensure that there were varied spatial and 94 University of Ghana http://ugspace.ug.edu.gh social contexts which expectedly added to the diversity in the data collected for the study (Webster, Lewis & Brown, 2014). The sample size of the study was not fixed at the beginning of the study. It was determined with the principle of theoretical saturation. This is the point at which additional data does not add to the insights already gained from the analysis of the data gathered and data analysis, two activities which were done concurrently (Mack et al, 2005; Morse, 2004; Sandelowski, 2008). The determination of sample size also took into consideration the research questions and the nature of the responses obtained from the participants themselves (Bryman, 2016; Fusch & Ness, 2015). Purposive sampling was used in the selection of participants. This is because the purposive sampling technique is used in the selection of particular people who would yield the most relevant and plentiful data in respect of the study since they possess the characteristics that will allow for a more detailed exploration of the issues under study (Bryman, 2016; Yin, 2011). To Creswell (2013), the purposive sampling technique allows for selection of individuals who inform a comprehensive understanding of the research problem. This sampling technique was preferred because middle-class people with disabilities in Ghana are not readily visible because of their occupational and social engagements (Berg, 2001; Kumekpor, 2002). Those who were available were in different spheres of engagement. It became necessary then that those to be included in the sample for the study were selected from different social, economic, political and religious backgrounds to allow for different responses and experiences of stigma to be found. Consistent with the conduct of hermeneutic phenomenology, the participants were chosen meticulously to ensure that they have all experienced the phenomenon being studied, the stigma that persons with 95 University of Ghana http://ugspace.ug.edu.gh disabilities experience in their daily lives and also to ensure that I could, as the researcher develop a common understanding of their experiences (Creswell, 2013). In all, I interviewed 16 adult participants. This number falls within the acceptable range of number of participants that may be used in qualitative studies (Mason, 2010), particularly phenomenological studies (Pietkiewicz & Smith, 2014; Smith, 2011). These 16 participants included five females and 11 males and their ages ranged between 27 years to 71 years. One had a speech defect, two were amputees and three had hearing impairment. There was one kyphotic person and one achondrosplastic person. Four participants were physically challenged and one had partial visual impairment and was also physically challenged as a result of her acquisition of multiple sclerosis. Two of the participants were visually impaired and one had partial visual impairment and was also an amputee. Their disabilities occurred at various stages of their lives. The disabilities of some were caused by congenital factors. A number of them were not born with the impairments but developed it after they had fallen ill with conditions such as meningitis, measles and poliomyelitis. Some also became physically challenged after they were involved in vehicular accidents. One had an amputation as a result of a domestic accident and another had his amputation on the advice of a medical doctor as a result of a medical condition he had as a child. Another had an amputation as a result of the effects of a degenerative medical condition. For this particular participant, his stigmatising experiences were very fresh and novel. There were 10 Akan participants. These included three Asante, three Bono and four Fante. There were two Wala participants and one participant each from the Adangme, Ewe, Builsa and Nanumba ethnic groups. One of the participants, Jeanette is my family relation and I started the interviews with her. I saw the second participant on a TV programme and found out he worked close to where I 96 University of Ghana http://ugspace.ug.edu.gh live. I went to his office and got his contact and got in touch with him for the interview. I met the third participant at a disability advocacy event about a year prior to the commencement of the fieldwork and I had obtained her contact. I got in touch with her subsequently and she agreed to participate in the study. The fourth works close to where I live and I got in touch with her for the fieldwork. The fifth is a long-time friend and senior colleague who had a disability that was unknown to me until a second more visible disability occurred. I had not seen him in a long while and when I met him, I realised there had been a change in his bodily configuration. I got in touch with him subsequently for the interview. The sixth was a journalist whom I had seen on TV. I contacted his media company and got through to him. The seventh was an uncle of an old school mate of mine. My friend spoke to him about my work and he readily availed himself for the interview. The eighth participant was a friend of a relation who helped me to get to him. I got in touch with him subsequently and proceeded with the interview. The ninth participant was an acquaintance from my university. I had not even considered him for this study until I met him one afternoon. I looked at him and felt he fitted the profile of participants I was recruiting for my study. I spoke to him about it and he accepted to be part of the study. I got in touch with the tenth participant through a friend of mine who used to work with her. The eleventh participant is a former work colleague of a friend and I got in touch with her through my friend. The twelfth participant was once a student at my university and I got to interview him through a mutual friend of ours. I got to the thirteenth through an agency he works with periodically. I got his contact from the agency and got in touch with him. I got in touch with the fourteenth through a mutual friend I share with the participant. The fifteenth participant was a friend of an extended family relation. The sixteenth participant and I met and struck an acquaintance in an office and I followed it up from there. I have 97 University of Ghana http://ugspace.ug.edu.gh used pseudonyms for each of the 16 participants and I have also limited the amount of information I have given on each in order that they will remain anonymous in this dissertation. All the information I have presented, however, are correct except that they are pretty generic where necessary. This has been deliberately done to conceal the real identities of my research participants. The profiles of the participants appear in Table 2. Field Entry, Recruitment Strategies and Profiles of Research Participants The strategies for recruiting participants for the study were determined by the nature of the study (Mack et al, 2005). The field work took place between January 2016 and November 2016. I was interested in identifying and interviewing middle-class persons with disabilities for this study. I had a broad idea of the people I wanted to recruit in this study as participants. I was minded to be flexible and ready for any eventualities which are hardly rare in qualitative studies (Mack et al, 2005). By the nature of the research questions of the study, however, all the participants had to be persons with disabilities who fitted the classification of being middle-class. I mostly used existing relations in family and social contacts to recruit the participants for the study (Silverman & Marvasti, 2008). Data Collection Process In-depth interviews (combined with the Life History approach) were the main instrument of data collection given that they enabled the researcher to explore the lived experiences of people with disabilities from the account of the participants (Creswell, 2013; Brinkmann & Kvale, 2015; Mack et al, 2005; Yeo, Legard, Keegan et al (2014). In-depth interviews were used to afford and encourage the participants to have the opportunity, time and ease to reconstruct their experiences in their social spaces as well as giving them the chance to explain their reality in their own words (Yin, 2011). The use of in-depth interviews is 98 University of Ghana http://ugspace.ug.edu.gh usually to encourage participants to participate and provide a vivid representation of their experiences particularly when researchers want to probe into the personal histories, perspectives and experiences especially when sensitive issues are involved (Bryman 2016; Creswell, 2009; Mack et al, 2005, Yeo et al, 2014). In order for me to retain control over the line of questioning and also the ability to probe into matters of interest, in-depth interviews were the optimal method to use (Brinkmann & Kvale, 2015; Creswell, 2009; Mack et al, 2005). I conducted the in-depth interviews using a semi-structured interview guide. This type of interview guide was used because it allowed me to start with a generic set of questions or issues to be discussed and it also offered me the ability to digress and probe into related issues whenever necessary (Berg, 2001; Brinkmann & Kvale, 2015; Creswell, 2009). The interview guide had 10 sections, with questions in each section designed to elicit responses on particular aspects of the participants‘ lives. The different aspects of the participants‘ lives included questions on their background and family relations, their general perception and experiences of disability, experiences at home, school and at work. I was also interested in the participants‘ social networks, the social supports available to them and the relations that exist between them and their communities. I also sought to find out about the social and places of inclusion and exclusion as well as their needs, future aspirations and their fears. The participants‘ knowledge of Ghana‘s Disability Act was of interest to me as well. A sample of the questionnaire is attached at the end of this dissertation as Appendix I. 99 University of Ghana http://ugspace.ug.edu.gh Table 2: Profiles of Participants for the Study No. Name* Age Gender Marital Type of disability Age at Cause of Disability Occupation Level of Ethnicity Status Onset Education 1 Jeanette 30 Female Married Speech Congenital Congenital Health Professional Tertiary Akan-Fante 2 Matthew 38 Male Married Visually impaired 12 Congenital IT Administrator Tertiary Akan-Fante 3 Maame 55 Female Married Multiple Sclerosis 36 Unexplained medical Journalist/ Civil Tertiary Akan-Asante Factors Society Advocate 4 Agnes 55 Female Single Kyphosis Congenital Congenital Civil Servant MSLC Akan-Bono 5 James 59 Male Married Amputee & Partially 15 & 58 Suspected accident & Academic/ Real Estate Tertiary Akan-Fante Visually Impaired Degenerative disease Owner 6 Jacob 37 Male Married Visually impaired 4 or 5 Childhood Disease Journalist Tertiary Akan-Asante 7 Yakubu 71 Male Married Physically Challenged 38 Vehicular Accident Retired Civil Servant Tertiary Wala 8 Gabriel 33 Male Single Amputee 9 Childhood Disease Civil Society Advocate Tertiary Nanumba 9 Daniel 27 Male Single Amputee 4 or 5 Domestic Accident Teaching Assistant Tertiary Builsa 10 Akosua 46 Female Single Physically Challenged 7 Childhood Disease Journalist Tertiary Akan-Bono 11 Martha 33 Female Married Hearing Impaired 5 Childhood Disease Teacher Secondary Akan-Asante 12 Sam 32 Male Married Hearing Impaired 8 or 9 Childhood Disease Civil Society Advocate Tertiary Wala 13 Ezekiel 37 Male Married Physically Challenged 6 Childhood Disease Para Athlete/ Civil NVTI Ewe Society Advocate 14 Tony 53 Male Married Hearing Impaired 6 Childhood Disease Tutor Tertiary Akan-Fante 15 Kofi 29 Male Single Achondroplasia Congenital Congenital Insurance Broker Tertiary Akan-Bono 16 George 38 Male Married Physically Challenged 35 Vehicular Accident Health Professional / Tertiary Adangme Teacher Source: Fieldwork, 2016 *Pseudonyms used for the purpose of anonymity 100 University of Ghana http://ugspace.ug.edu.gh As I realised, some of the participants seemed excited that someone had an interest in their experiences and were more than willing to participate in the study. Some of them had participated in disability studies research in the past and so were not necessarily overawed with the interviews, but quite clearly and consistent with Mack et al (2005), the interviews seemed flattering and cathartic to some of the participants as they were afforded the opportunity to share stories of their ineffable experiences. The interviews were tape recorded with permission from the participants. Observation was used as an auxiliary data collection method. By this, the ease and mode of movement, activities and associations in the homes and offices of the participants were also taken into account (Adams & van Manen, 2008; Kleinman & Hall-Clifford, 2009). Data for the study was from participants‘ recall of past experiences and accounts of their present circumstances and how they interpret these. Whenever I contacted a participant about this study, I introduced myself as a student of the University of Ghana, Legon and also gave the participant a copy each of an introductory letter issued to me by my department as well as the Protocol Consent Form approved by the Ethics Committee for Humanities (ECH) of the University of Ghana. The ECH is the institutional review board that gave me clearance before the study commenced. For the visually impaired participants, I gave them braille versions of the two documents that I had obtained from the Office of Students with Special Needs (OSSN), University of Ghana, Legon. I gave the documents to them so that they could read before we could proceed further. When the participants had read the two documents and had accepted to participate in the interview, the consent forms were signed by both the participant and I and I gave a copy each 101 University of Ghana http://ugspace.ug.edu.gh of the consent form and the introductory letter to each participant. One visually impaired participant gave an oral consent since he was alone at home at the time of the interview but he read the braille documents and expressed his delight that I had made the document available to him. The second visually impaired participant also read the documents and made his niece who was at home at the time of the interview sign the consent form as a witness. I always told the participants that I wanted to record the interaction and before each of the interviews, I showed my digital voice recorder to the participants. All the participants agreed to its use and I always placed it where they could see it and switched it on only after they had agreed to its use. Most of the interviews were conducted in private places except where the participants indicated that they had no problem with people being around. In situations of that nature, I was minded to ensure that we sat a distance away from the people present in order that they would be unable to follow our conversation as a way of ensuring that privacy would still be maintained. None of the participants opted out of the study and none of the interviews ended abruptly. The length of the interviews varied from participant to participant. The shortest interview lasted for 74 minutes (1 hour and 14 minutes). The longest interview lasted for 155 minutes (2 hours and 35 minutes). The average duration for all 16 interviews was 119 minutes (approximately 2 hours). Before each interview, the participants were told that the interview could last up to two hours. For the interviews that went beyond two hours, the interactions became exciting and I reminded participants that our two hours was almost up but they expressed their desire to offer more of their time and that I could even come again if I needed more information. 102 University of Ghana http://ugspace.ug.edu.gh In all of the interviews, there were pauses where necessary to allow participants to answer phone calls, attend to their children, spouses and visitors, eat and attend to official duties. I always explained to the participants that I was ready to wait or postpone the interview if they so desired but in all instances, they expressed their willingness and readiness to continue. During the breaks, I reviewed the questions and answers so far and reoriented myself for the rest of the interview. Resumption was by recapitulation of the last point discussed before the interruption. Thirteen out the 16 interviews were done in English and one was conducted in Asante Twi. Two interviews were done using both English and Asante Twi. In all 16, however, I allowed the participants to decide which language they were most comfortable with. In the case of the three interviews that were done either partly or wholly in Asante Twi, there were no problems as I speak very good Asante Twi and the participants also had no problem with Asante Twi. One of the interviews done partly in Asante Twi was with the Ewe participant. He grew up in an Akan-speaking area and so had no problem with the Asante Twi. Ethical Issues in the Study Ethical issues in social research are of importance because a researcher essentially probes into the private lives of participants and makes them public (Brinkmann & Kvale, 2015). It was therefore necessary that I, as the researcher, took the necessary precautions in ensuring that the integrity of the participants would not be compromised with their participation in this study. Webster et al (2014) posit that it is necessary that a researcher develop the capacity to anticipate what may happen in the course of the research and find ways of dealing with 103 University of Ghana http://ugspace.ug.edu.gh unexpected occurrences. All these were important to me so I submitted the research and myself to institutional review. Ethical clearance for the study was granted in December, 2015 (see Appendix II). Potential participants for the study were briefed on the purpose and nature of the study, what was expected of them, the expected outcomes of the study, both psychological and social, and who the beneficiaries of the study‘s findings would be once I made contact with them (Bhattacherjee, 2012; Brinkmann & Kvale, 2015; Mack et al, 2005; Neuman, 2007). I also explained to them that participants were assured of anonymity and that their responses would be kept in confidence (Berg, 2001; Bryman, 2016; Webster et al, 2014). Those who agreed to participate in the study were required to sign consent forms to validate their participation in this study. The consent form had the name and contact details of my lead supervisor as well as that of the Ethics Committee for the Humanities (ECH), University of Ghana, Legon. Every activity I undertook during the interviews had the interests, needs and concerns of the participants at its core and it was absolutely necessary that I made sure that the participants were free and safe to share personal stories which would become public with this dissertation (Brinkmann & Kvale, 2015; Mack et al, 2005; Neuman, 2007). Much as I needed their responses, it was necessary that I did not exploit the participants or take advantage of their disability. I tried the best I could to show my participants as much respect as I was required to show. Almost all the participants were older than me and even those who were a few years younger were deserving of my respect. The place of respect and trust in the establishment of a relationship between researchers and participants cannot be overemphasised. 104 University of Ghana http://ugspace.ug.edu.gh Consistent with ethical practices, participants had the freedom to voluntarily decide whether they wanted to participate in the study or otherwise (Bhattacherjee, 2012; Neuman, 2007). All the participants whom I ended up interviewing for this study participated voluntarily. I explained to them also that they were free to withdraw from the study if they so wished and that I would not bear them any grudge. At no point in time were any of the participants at risk of physical harm neither did I act in any way that exposed the participants to stress or loss of self-esteem (Bryman, 2016; Mack et al, 2005; Neuman, 2007). I allowed the participants to choose places where they would be most comfortably seated for the interviews. While it is difficult to know whether an individual has become emotionally or psychological hurt, I tried my best to make sure that the interviews were conducted in a light-hearted manner, in order that the participants would also be comfortable and have no apprehensions. I allowed them to express themselves fully and did not interject when they spoke as a way of ensuring their autonomy (Mack et al, 2005). I believe that the interviews allowed them to pour out their thoughts, emotions and opinions about their experiences. None of the participants expressed any reservations, either in word or gesture about being offended by any of the questions or issues that were discussed. Before each interview, particularly those which occurred in places where other people were present, I told the participants that for the sake of their privacy, I would be grateful if they allowed us to sit at a place where the closest person around would not be able to hear the line of conversation. The participants seemed not to bother about that and assured me that they were not anxious about the presence of the other people. Nevertheless, I tried to make sure 105 University of Ghana http://ugspace.ug.edu.gh that the people present were either too far from us to hear us or that we spoke softly enough for them not to hear us. Indeed, I have maintained a relationship with all my participants even though the interviews were conducted months ago. The nature of the interactions I had with them during the interviews and the relationship I have developed with them since then essentially makes it necessary that I keep in touch with them. This study is not the end of my foray into disability studies. As a matter of fact, it is just the beginning and so my relationship with the participants will serve me well and also provide them with an opportunity to contribute to research, policy and practice in disability advocacy. Data Storage and Management The interviews were transcribed not long after they had been conducted. This was necessary for two reasons. One, to allow me to review the interview process and take cues from it where necessary to make subsequent interviews better and two, to allow me to be grounded in the minute details of the interview which can otherwise be easily missed and forgotten, even though they can add to the depth of the data from the interviews. The interviews were all transcribed in English. The three interviews that were partially or wholly conducted in Asante Twi were translated into English and transcribed accordingly. After the transcriptions had been completed, I played all the 16 interviews back, listened and made sure I had cleaned the transcripts and corrected any error or omissions that might have occurred inadvertently during initial the transcription process. 106 University of Ghana http://ugspace.ug.edu.gh Audio recordings of the interviews and the transcripts of the interviews have been kept on a secure drive in a secure location. Each interview was assigned an archival name. The same archival name was used to name the corresponding MS Word file for the transcripts in order that I could track either file easily. The audio files and the transcripts will be deleted and destroyed once the thesis is done and all publications that will emanate from the data are concluded. Role of the Researcher: Being Reflexive I was the agent for data collection as the researcher in this study, as is the case in qualitative research and as a result, I was very much embedded in the data collection process, the data itself, the analysis of same, the interpretations and the conclusions that are drawn in this study (Berg, 2001; Bhattacherjee, 2012; Brinkmann & Kvale, 2015; Creswell, 2009; Flick, 2014). As I asked the participants various questions I constantly reminded myself that I am a non- disabled male researching into the lived experiences of persons with disabilities. It was necessary then, that I tried to be neutral by avoiding any form of unnecessary bias throughout the conduct of this study (Ormston, Spencer, Barnard & Snape 2014). To establish rapport in my interactions, I tried in all the interviews to get the participants to see me as a relation they could trust. I was the age of a nephew of one participant who happens to be my friend and I wanted the participant to see me as his nephew in order that he could trust me enough with his stories. To another, I was a sibling, to others I was an age mate with whom they could relate. For two of the female participants, I was like a son since I am the age of their children. To all of them, however, I was a friend, sincere, genuine and 107 University of Ghana http://ugspace.ug.edu.gh respectful. To those who I did not know prior to the commencement of this study, the reputations of the social contacts who led me to them worked in my favour. Those participants seemed to trust my contacts and so they appeared to extend that trust to me. I, however, made sure that once I had entered into their world, I got to develop a relationship with them that would be independent of the contact persons. Given that I am not a person with disability, it was paramount that I made sure that my participants would not feel that I was also stigmatising them with my research work and my questions. I reiterated the purpose of this study to them from time to time in the course of the interviews. I have never experienced the stigma that the participants have to deal with in their daily lives. In that regard, I was an ‗outsider‘ and so I had the privilege of not having any prior experience similar to what they have which could interfere with my understanding and interpretation of their lived experiences. I remained open-minded during the interviews and even when I anticipated a particular response on the basis of what they might have said earlier or what I had seen happen around them, I did not assume any responses. I went on and asked the questions in order that I would not impute my own interpretations to their lived experiences. As I indicated earlier, I did not really know the full extent my twin sister‘s experiences of stigma. I was thus open-minded in the interview I had with her and with the other participants as well. I did not carry any ideas of expected stories of stigmatising experiences. Ultimately, I see disability as a basis for human difference, not as a symbol of suffering and denigration (Creswell, 2013), difference in the same way as the difference between a man and a woman, before society constructs identities of masculinities and femininities around them. 108 University of Ghana http://ugspace.ug.edu.gh This recognition does not deny the worth of persons with disabilities but rather recognises their humanness and the need for the wider society to recognise the worth of persons with disabilities as active social agents worthy of a dignified place in social interaction. Method and Procedure of Data Analysis Data from the interviews were analysed inductively as comprehensive themes were generated from the responses of the participants. By the inductive approach, I did not seek to establish a fit between the data and an existing coding frame or preconceived categories (Bhattacherjee, 2012; Flick, 2014; Yin, 2011). Rather, using the approach known as Interpretative Phenomenological Analysis (IPA) as the analytic framework, I reflected on the data continuously and filtered through the critical issues that appeared from the data as themes and meanings which I then used for the analysis emerged. IPA is a research design in itself (Pietkiewicz & Smith, 2014; Smith & Osborn, 2015) and can also be used as an analytic framework for data analysis (Finlay, 2014; Larkin, Watts & Clifton, 2006; Palmer, Larkin, de Visser & Fadden, 2010). It is in the context of the latter that I have used IPA in my study. In principle, the IPA involves a dual process of interpretation where the participants make sense of their lived experiences and the researcher also makes sense out of the participants‘ interpretations of their experiences (Finlay, 2014; Smith & Osborn, 2015). As an analytic framework, the IPA captures the essence of participants‘ emotional reactions to their lived experiences, these emotional experiences are aspects of their experiences as it influences their thoughts, preferences, their choices and decision making. The IPA is an analytic method that is used to examine how individuals understand and account for their 109 University of Ghana http://ugspace.ug.edu.gh lived experiences in their personal and social lives and it is founded on the assumption that individuals have the capacity to interpret the events and daily occurrences in their lives (Pietkiewicz & Smith, 2014; Smith & Osborn, 2015). This method is idiographic, with its recognition of individuals‘ possession of unique identities which translate into unique experiences (Pietkiewicz & Smith, 2014). The sample of the study, its size, selection process and the method of data collection were all suitable for the application of the IPA (Palmer et al, 2010; Smith, 2011; Smith & Osborn, 2015). The sample of the study was largely homogenous. All the participants were adult middle-class persons with disabilities. The sample was purposively chosen and in-depth interviews were used to gather data. The questions that were asked and issues that were discussed during the in-depth interviews also resonate with the purpose of the IPA. The IPA is sensitive to changes in individual identities and social contexts. Its flexibility gives it its strength (Larkin et al, 2006). The IPA was the preferred analytic framework because it resonates very well with the theoretical positions of hermeneutic Phenomenology as my research design, the social relational model of disability as the conceptual framework in their collective emphasis on unique social and individual contexts giving rise to unique and multiple lived experiences. The data analysis process was modelled on the IPA procedure suggested by Smith and Osborn (2015). They, however, believe that each research or data set is different and so modification of what they suggest is possible, as a reflection of their belief in the influence of varying situational factors. For my purpose, the process I used in analysing the interviews in this study is presented in Figure 1. 110 University of Ghana http://ugspace.ug.edu.gh Figure 1: Data Analysis Process Source: Author’s Construct/Smith & Osborn (2015) Once I started the data gathering process, I commenced with the transcription of the interviews. They were done concurrently. I read and reread the interviews a number of times. I also listened to the interviews on a number of occasions so that I could recreate the setting of the interview and capture the dynamics in the participants‘ use of language, voice, tone and pauses in their communication. After listening to the interviews a number of times, the reading of the interviews felt like listening to the participants speak to me all over again in real time. As I read the transcripts, I highlighted segments that I believed had interesting issues that were of significance to the study. I read the interviews a number of times and on each occasion, new segments were highlighted as new and different issues emerged. As I went through the listening and reading processes, I made notes on what I thought were the emerging issues and my own interpretations of the issues that were discussed in the 111 University of Ghana http://ugspace.ug.edu.gh interviews. The notes offered me the opportunity to establish similarities and differences in the lived experiences of the participants. After going through all the transcripts carefully, I organised the notes I had made into themes. Having done so, I proceeded to find relationships that existed between the themes and then regrouped them into clusters. The grouping processes were done on the basis of the meanings that were contained in the texts that the themes represented. I subsequently constructed a table and split it into three columns, with one each for text, themes and clusters. I colour-coded each of the clusters in the table and arranged the texts to reflect the meanings that had been gathered from the interviews. The meanings that were gathered from the participants were related to the experiences of spatiality (lived space), corporeality, (lived body experiences), temporality, (lived time) and relationality or communality (lived human relation) (Adams & van Manen, 2008). The meanings upon which the findings of the study are based were established after several close readings of the data and it was necessary that I did it this way. The reason is that I had to learn the participants‘ life experiences and the meanings they ascribe to same before making an interpretation of what their experiences mean to them. This was to fit what Creswell (2009) describes as learning about every individual‘s experience, interpreting the experience and altering the process to obtain the required information. The interpretations are a crucial aspect of the research process as it considers the social and cultural backgrounds of the participants as well as their present day social engagements and outcomes. Different people experience different things and the contextual nuances made the format of questioning and the pattern of interactions very fluid. It was also necessary that I allowed the research design to evolve into 112 University of Ghana http://ugspace.ug.edu.gh what it finally became because it is often impossible to stick to the initial plan (Creswell, 2009). After these processes, I organised the lived experiences of the participants and proceeded with the write-up of this thesis. I must emphasise that the IPA process is flexible and dynamic, allowing for different possibilities in the data analysis process but it is also symmetric and balanced (Smith & Osborn, 2015), allowing the researcher to follow a process that can easily be vetted and corrected, where necessary. Quality Control and Assurance Measures The credibility of conclusions of a qualitative study is as important as the processes leading to the conclusions. The lack of rigor in a scientific research diminishes its scientific worth (Morse, Barrett, Mayan, Olson & Spiers, 2002). The place of rigor in qualitative and interpretive research is conceptualised as a series of systematic and transparent approaches applied during the data collection and analysis (Bhattacherjee, 2012; Ormston et al, 2014; Tracy, 2010). In order to reduce unnecessary biases and to validate the findings of the study and increase its reliability, several techniques were used to ensure that the outcome of the study would reflect the true interpretation of the issues not from my perspective as the researcher but from the perspective of the participants whose voices tell the story of the stigmatising experiences studied in this thesis research. Neuman (2007) conceptualises reliability in qualitative research as dependability or consistency. To ensure reliability in this study, I maintained audit trails to keep track of all my activities and the issues that came up at various stages of the conduct of the research 113 University of Ghana http://ugspace.ug.edu.gh (Creswell & Miller, 2000; Golafshani, 2003; Miller, 2008; Rodgers, 2008). In addition to that, I listened to the interviews over and over and went through the transcripts to make sure that the transcripts did not contain any errors (Brinkmann & Kvale, 2015). Additionally, I constantly went back to the definition of the codes that I had generated from the texts in order that the meanings of the codes remained constant across the different transcripts over the time that I conducted the analyses (Creswell, 2009). Validity may be explained as assessing the accuracy and truthfulness of the findings of a study (Creswell, 2013; Neuman, 2007). To ensure validity in this study, I undertook a number of activities that were geared towards the objective of providing credible findings. I undertook member checking, that is, taking the findings back to the participants for them to review in order for them to authenticate them as accurate (Creswell, 2009; Yin, 2011). I interacted with four of the participants for the purposes of member checking. I also used a colleague as an external auditor who reviewed my instruments, data, findings and arguments (Creswell, 2009). Autobiographical Reflection This study has afforded me the opportunity to get into the world of persons with disabilities. Hitherto, almost everything I knew about them was from my limited knowledge and understanding and from other people‘s interpretation of what I thought happened in the world of persons with disabilities but with this study, I have a good systematic and theoretical understanding of their frustrations and their joys, their moments of glory and their moments of despair and the daily experiences of stigmatisation 114 University of Ghana http://ugspace.ug.edu.gh For me, this research represents a starting point for my participation in the disability movement, both as an academic researcher and as an activist. I have spoken to people who despite their class privileges, are sometimes oppressed, stigmatised and discriminated against. I realise that it is not enough for me to just research into their lives and their experiences just for academic purposes. I also believe that it is an opportunity for me to join the movement towards the emancipation of an oppressed people. After all, disability can be anyone‘s lot at any time. I have learnt invaluable lessons for myself as a person from my interactions with the participants of this study. Seeing their smiles and how they construct positive identities of themselves is a sign that there is, and will always be peace in the midst of the storm. Nevertheless, the storm of stigma has to be chased away. Another important thing that I have learnt from this study is that it is not enough for me to simply go through the motions of subaltern experiences but then, what matters most is that I allow the emotions to draw me into action. 115 University of Ghana http://ugspace.ug.edu.gh CHAPTER FIVE LIFE HISTORIES OF (DIS)ABILITY Introduction This chapter has two parts. I present the life histories of the participants of this study in the first part. The life histories have been organised into four categories, as a reflection of characteristics of the participants. These characteristics include the social class the participants were born into, the onset of the disability and the kind of support that the participants received from their families or people around them. The importance of family support in the lives of persons with disability has been identified by Ablon (2002). Even though all the participants are now middle-class, some of them had to rise from lower social class to get there and that has an influence on the nature of their stigmatising experiences. In the same way, the background of the participants who were born into middle-class families and acquired their disabilities as children and those who were in the middle-class before they acquired the disability later in their adult lives also have their social class statuses influencing their stigmatising experiences. The categories into which the participants have been put include I. Middle-class and Childhood Acquisition of Disability – M/CA (Jeanette, Matthew, Martha, Gabriel, Ezekiel, Daniel); II. Middle-class and Adulthood Acquisition of Disability – M/AA (Maame, Yakubu, George, James); III. Lower-class and Family support – L/FS (Jacob, Sam, Akosua, Tony); and IV. Lower-class and lack of family support – L/LFS (Agnes, Kofi). The life histories allow me to situate the stigmatising experiences of the participants, as discussed in this chapter and the ones that follow, in their individual as well as collective contexts of disability and stigma experiences. In the second part of this chapter, I discuss the 116 University of Ghana http://ugspace.ug.edu.gh social class positions of the participants as identified within the four categories in juxtaposition with the social relational model of disability. This section looks at how the participants have used their middle-class positions to navigate around their stigmatising experiences and the oppression that disability engenders in their respective social spaces. Middle-Class and Childhood Acquisition of Disability (M/CA – Category) The life histories of six participants are presented in this section. Matthew, Martha and Ezekiel acquired their disabilities early in their lives and grew up with it. Jeanette was born with a congenital defect. Gabriel was born with a defective knee cap that eventually required an amputation to save his life. Daniel lost his arm in a bizarre accident at home as a child. All six were born into privileged middle-class families that gave them support throughout their formative ages, so that they remain in their social class. All but two of the six participants, discussed in this section, that is Gabriel and Daniel, were born in large cities. The two who were born in rural areas, however, moved to urban areas while they were still young. They all grew up and schooled in large cities and are working in large cities. Jeanette and Mathew have migrated away from the cities of their birth but Martha remains in the city of her birth. Ezekiel‘s work as a disability advocate takes him around the country but his family remains in the city of his birth. Jeanette Jeanette was born with a cleft palate, a congenital defect which has led to partial impairment of her speech. Her father was and remains the proprietor of a publishing company. Her mother was serving in one of the security services at the time of her birth. When Jeanette‘s condition 117 University of Ghana http://ugspace.ug.edu.gh was discovered by her parents while she was still a baby, they took her to a tertiary hospital. The doctors, however, told them that corrective surgery was not available in Ghana. This was in the mid-1980s. Jeanette grew up together with her older siblings and was educated in a private preparatory school, public junior and senior secondary schools. She had the benefit of having virtually everything she needed to succeed in school. All her five siblings had this same trajectory in their formal education and there was no indication that she had fewer privileges at home or in school because of her speech impairment. She performed chores similar to what her older siblings had done and enjoyed the same opportunities that they had all received. Jeanette says that ―as a child, I wasn‘t aware of my disability, even up till primary school, I wasn‘t aware of it. I knew there was something wrong but I didn‘t care because I knew all my teachers liked me.‖ She admits that she was a good student and so was liked by her teachers throughout her basic and secondary education. She, however, realised the full extent of her speech impairment when she went to secondary school. In her words, When I went to senior high school, I started realising the magnitude of my speech defect because I met so many people. Earlier on, I thought that…my childish thought was that I had traded my voice for my brains with God, so I thought God was just being fair because I was a little intelligent…very intelligent. That was what I thought, honestly but when I went to senior high school, I met other equally good girls who were competing with me academically and then I felt like I had been cheated, so that is where I started feeling bad and then going through a lot of mixed emotions. Some of them were anger [and] self-pity. Jeanette‘s feelings of being ―cheated‖ did not occur from her interactions with her family, an indication that neither Jeanette nor her family considered it a limitation in anyway. Her academic successes and her family background in so many ways insulated her from negative 118 University of Ghana http://ugspace.ug.edu.gh thoughts that people may have had about her. Despite her speech impairment, she was the top contender for her preparatory school‘s spelling team, something that endeared her to her teachers and her colleagues. At the secondary school, she was a member of the school‘s science and maths quiz team. She studied pharmacy in the university. Pharmacy is considered to be one of the elite programmes studied in Ghana‘s universities and is pursued by brilliant students. At the time of this study, she was pursuing a graduate degree in pharmacy and has since graduated. She is also a preceptor for pharmacy interns at her unit in the hospital. The preceptor role requires her to teach the interns on a daily basis. Her education and professional practice all attest to the privileges she has had, her partial speech impairment notwithstanding. She is married and has a daughter. She told me that her speech impairment has never been an issue in her marriage. The only time it became the subject of a discussion between she and her husband was when they discussed it with the reverend minister who was to officiate at their wedding. Together with her husband, they have established a pharmacy shop which she manages as a part-time job. This adds to her full-time job as pharmacist in one of the largest hospitals in Ghana. Matthew Matthew was born in a neighbouring West African country. His family migrated to Ghana after political crisis erupted into conflict in that country. His father was an accountant and his mother was an administrator at an examinations organisation. Matthew says he had a ―series of challenges‖ that culminated in his loss of sight when he was about 12 years old. These started with meningocele, a congenital defect that involves the displacement of some brain or central nervous tissues. He had corrective surgery when he was about three months old and 119 University of Ghana http://ugspace.ug.edu.gh another surgery at about six years to correct the position of his eye lens. After that, several other complications were detected and they eventually culminated in his loss of sight. As a child, Matthew told me that he partook in all the chores at home and was never excused because he could not see. Even when he and his siblings had been involved in a ‗domestic misdemeanour‘, he was never spared the punishment that was given to the others. After he lost his sight, his parents often took him to amusement centres in their effort to get him to participate in mainstream social and recreational activities. His parents at some point did not live together so he moved between them at different times. Whoever had him at any point tried as much as possible to engage him in social activities. None of them wanted him to be isolated and tried to ensure that he was never marginalised, whether at home or outside. Matthew had his basic and secondary education in special schools for visually impaired persons and continued to the university for his Bachelor‘s degree. In school, he was involved in student activism and he says that ―…they contributed a great deal in giving me the voice, let me say the empowerment to speak in demanding my rights.‖ He has a graduate degree from an American university in addition to a Bachelor‘s degree from a Ghanaian university. He is married and has a daughter. He takes care of his daughter and does the laundry and cleans the house. Essentially, the domestic chores are shared between him and his wife. He believes he is able to do this because he was brought up by his parents to perform chores at home and that is why he is not overly dependent on his wife or anyone. In fact, when I visited him at his home for this interview, he was home with his daughter. At different times during the interview, he left to prepare meals for his daughter and also set-up electronic devices for his daughter‘s recreation. Matthew has worked with a number of non-governmental 120 University of Ghana http://ugspace.ug.edu.gh organisations (NGOs) as a civil society advocate and an administrator. He has participated in several national advocacy activities. His services are highly sought after because of his training and education. He tells me that he was poached by his current employers to come to his current place of work. Martha Martha was not born with her hearing impairment. She acquired it as a complication after a bout of measles when she was about five years old. Her father was serving in the military and her mother was a business woman. Martha says that her impairment is not complete. She is able to hear when she uses the cochlea implant but she says that she stopped using the implant when she was about 12 years. She did so because she accepted the condition and as she put it, ―I was forced to use it and I accepted it because I was shy to be called a deaf person so always I was using it but when I grew up, I realised that no, I‘m a deaf person, why should I be shy about it so I decided to throw it away to be at peace with myself.‖ When her hearing was impaired, communication with her family at home was constrained. They could not sign to communicate with each other. In her family‘s desire to have her educated and become a functional member of the family and the society beyond, they made sure that she was transferred from her first school to an inclusive school which also catered for the special needs of hearing impaired persons. It does appear that she was not very successful at the Basic Education Certificate Examination (BECE) and was advised to re-sit. She declined the advice to re-sit the exams but was admitted to an inclusive secondary school later. Her father took her to a catering school after she completed her senior secondary school certificate exams (SSSCE). 121 University of Ghana http://ugspace.ug.edu.gh Martha says that she found a job as a shopkeeper and saved money to rewrite her SSSCE. In all of Martha‘s life, it remains obvious that her family wanted her to get as much formal education as possible. Even when she seemed to falter in her educational progress at various stages, her family was ready to explore all available options for her. Martha told me that: They provided everything I needed, my education, many things. They never separated me. They always provided everything I needed, even now, they still do, even now, as I‘m even working, they still try their best to give me the best I want in life. They always try their best. They feed me with a lot of information. She remains very close to her siblings and her father, particularly after the demise of her mother. At the time of this interview, she was visiting her father in his home. Her family members have learnt how to sign to some degree in order for them to communicate with her. Martha is also able to make some speech sounds which are decipherable to her family members. Martha is married and has a son. She told me that her husband is trying to learn how to sign for their communication. Her two year old son is also picking up some signs for their communication. Martha is also a civil society advocate, having held executive positions in some organisations for persons with disabilities. She has attended international advocacy workshops and conferences for persons with disability in Europe and other parts of Africa. She is currently working as a teacher in a private special needs school and also completing a distance learning diploma programme with an Australian institution. Gabriel Gabriel was born in a rural area. His father was a chief who was also a wealthy merchant and his mother was a trader. He was born with what he describes as a ‗defective knee‘. His family 122 University of Ghana http://ugspace.ug.edu.gh members did not really know or understand what that condition was. According to Gabriel, among his kin, ―if you give birth to child and he is putting up some symptoms and you cannot really attribute it to something then it means that the person is an evil child. So it got to a point they were saying that I should be sacrificed but my dad said no.‖ An attempted treatment of the condition through surgery caused complications which, according to Gabriel, almost led to his death because of excessive bleeding. One of the doctors who treated him advised his parents to agree to the amputation of his leg, to which they agreed. After his amputation, some of his parents‘ kin who used to visit them and join them at mealtimes were reluctant in maintaining that social arrangement. In his words, ―some people stopped eating from my mother. You know because my father was, excuse me to say he had some money, and because of the chieftaincy too…so on market days, other family members who were in the villages will come and they ate from the house. So it got to a point they were no longer eating my mother‘s food.‖ Gabriel‘s father is a polygynist and so Gabriel had a number of stepmothers and half siblings. On a number of occasions, Gabriel was sure that his stepmothers and half siblings stigmatised him because of his disability. Beyond this, his friends and mates at school seemed reluctant in playing with him after the amputation of his leg. Gabriel believes that his ―dreams and aspirations have always been thwarted here and there but we have to persist.‖ One of the reasons why he has been able to persist is because of the support he received from his immediate family, that is, his father, mother and siblings. For instance, he told me about his father‘s resolve to support him when his father assured him that ―as for you, you will go to school and if money is on the horns of a bull, I will catch the bull 123 University of Ghana http://ugspace.ug.edu.gh for the money for you, and when my money finishes, I will ask people who owe your grandfather and I will take money from them for you.‖ After he completed his secondary education, Gabriel taught in the basic schools of some of the communities around his hometown. He told me that through his efforts, a number of communities around his hometown which had no basic schools now have basic schools. Gabriel has a Master‘s degree and only recently declined an opportunity to enrol into a PhD programme in a Ghanaian university because of his involvement in political activism. He still desires to pursue doctoral studies in the near future. He provides financial support to a number of his nephews and nieces, some of whom are in senior high schools and tertiary institutions. Gabriel is a disability advocate and political activist. He is very active in local government administration, having served as a government representative and a presiding member of a district assembly. Ezekiel Ezekiel acquired his disability after he contracted polio when he was about six years old. His father was a police officer and so his family moved residence whenever his father was transferred. He, however, grew up in a regional capital as his family sought for some stability for Ezekiel and his siblings‘ education. After he acquired the impairment, his family sought for care for him from medical professionals and spiritual healers. His family offered him a lot of support and tried to involve him in every social activity and this he believes contributed to his development. He said: Luckily I was born in a Christian family and the support was there from my family. The community side, it wasn‘t easy for me and the environment, but the family was so supportive, especially my mum and sisters. They couldn‘t give up 124 University of Ghana http://ugspace.ug.edu.gh on me even though I was special amongst the family. The Christian aspect played a role. They believe that God created everybody equally. I can say that it was the doing of God that I was lucky when I consider what other people go through but looking at my Christian family, I was lucky to be in a Christian family right from the beginning. They gave me all the support even though in the community, there was a challenge. People were pointing fingers at that, this boy is from this family and all of that but my family were ok and they stood by me and here I am today. Ezekiel attended a vocational school at a disability rehabilitation centre to learn craft and leather works after he completed junior secondary education. While studying, he joined the local disability association and was exposed to para-sports and he developed an interest in it. He joined the sporting association and with the support of his family travelled to another regional capital for training every weekend. He has since developed into one of the most successful para-athletes in the country. Ezekiel has competed in several major international sporting events such as the Paralympics, Commonwealth games and All Africa games and he has won several medals for Ghana. He used to work as a para-sports development officer at a sports academy and is now managing a sports academy he has founded. His academy trains and supports young para- athletes to compete in both local and international competitions. He also does a lot of media advocacy for para-sports development and awareness creation. In addition to these, he is also an executive for the sporting wing of the disability association. Ezekiel‘s wife, whom he met during his sporting activities, is also a wheelchair user and a para-sports athlete. They have three children. 125 University of Ghana http://ugspace.ug.edu.gh Daniel Daniel was born in a small village. His father is a civil servant and his mother is what he describes as a ‗businesswoman‘. His parents are separated and live apart. He lived with his mother and moved to Accra when he was about 10 years old. Daniel‘s hand was severed by a machine when he was about four or five years old. He had been left alone around the machine and he tried to touch a moving part of the machine which caused the accident. The accident meant that he did not start schooling early. He did not attend kindergarten but started from Class One. That affected his progress very much as he was almost always last in his class‘ order of merit. His performance caused him to be repeated about four times during his basic education. His academic performance improved later, particularly when he moved to Accra to join his father. Despite his initial failings, however, he received a lot of support and encouragement from his parents. He had his junior secondary education in a good school and senior secondary education in one of the elite schools in the country. Daniel did not seem to enjoy living with his father very much, not because of his father though, but because his relationship with his stepmother was strained. He was, however, made to do all the chores that a child of his age was expected to do. His father did not also want him to use his impairment as an excuse not to perform in school and often encouraged his teachers to discipline him whenever necessary. Sometimes, when he visited his mother, he was reluctant in returning to his father. He was always encouraged by his mother to take his education seriously. His mother would tell him ―if I grow old who is going to take care of me if you don‘t go to school?‖ and that, according to Daniel urged him to remain in school. 126 University of Ghana http://ugspace.ug.edu.gh Daniel graduated with first class honours and recently completed his Master‘s education. He works as a teaching assistant and has plans of pursuing doctoral studies in the near future. Daniel engages in outdoor sporting activities but stays away from games that tend to elicit offensive comments from participants. He is also active in various student organisations and social groups, holding several executive positions. He has learnt how to drive a vehicle and also knows how to ride motorcycles. Middle-class and Adulthood Acquisition of Disability (M/AA Category) The participants who are discussed in this section were already in the middle-class before they acquired their disabilities. Their disabilities occurred in their adulthood. Their class status has, however, not changed but has rather aided them in how they have responded to the occurrence of the impairments. Maame Maame has multiple sclerosis, an autoimmune condition that progressively damages the nervous tissues. She was born into a middle-class family. Her father was a public servant and her mother ran a nursery. Both of her parents are deceased but her father‘s estate still foots part of her medical bills. She grew up in Ghana attending some elite schools and enjoying holidays abroad. She trained as a journalist and worked as a journalist at a media house she had established together with her husband until her condition deteriorated. Early signs of the condition occurred when she was in her 30s and have progressed further. She currently uses a wheelchair and also has partial visual impairment as a complication from the condition she has. She has sought medical care in some of Ghana‘s top health facilities, the United Kingdom and North America as well. 127 University of Ghana http://ugspace.ug.edu.gh She has since established a disability NGO which cares for children with intellectual disabilities and autoimmune conditions. The NGO also has a parent support group. She is also involved in advocacy work for persons with disability at national level. At the time of the study, Maame‘s husband was a diplomat. She spends most of her time between her home and at the premises of her NGO. At home, she has two personal assistants and a driver who assists with her transportation. She has a vehicle which she uses whenever she has to move around town on her own. Yakubu Yakubu was working on a Government of Ghana/United Kingdom (UK)/World Bank project when he was involved in a motor accident. The accident occurred as he was traveling between two of his project sites. Prior to the accident, he had acquired a Bachelor‘s degree from a Ghanaian university and a Master‘s degree from an Australian university. The accident occurred when he was in his early 30s. It resulted in damage to his spine and it led to significant paralysis of his lower limbs and part of his face. He was initially treated in Ghana but was subsequently sent to the UK for additional treatment and rehabilitation. His medical bills were paid by the Government of Ghana. In all, he was away for almost two years for his treatment and rehabilitation but he kept his job and rose through the ranks to become the director of his administrative unit, a position he held until his retirement. His rise to the top included a direct request made by the sector minister of the Ministry he worked under to have him transferred from the regional director position he held to the ministry. The sector minister, who had initially doubted Yakubu‘s ability to perform when they first met, became convinced on evidence of his work output. 128 University of Ghana http://ugspace.ug.edu.gh Yakubu in recounting his response to the minster‘s comment at their first meeting said, ―I laughed and I said Sir, we‘ve never met but don‘t you see my reports? In fact, he was the one who insisted they should bring me to Accra because he saw I was capable of working in Accra.‖ His three daughters who were all young when the accident occurred are now career professionals. Yakubu uses walking frames for his mobility and also drives a vehicle that has been fitted with a hand-controlled lever. The lever allows him to control the pedals with his hands. He is retired and spends much of his time at home but he regularly picks his grandchildren from school. He also participates in activities of his religious community as well as the pensioners support group of which he is a member. Yakubu also has a small gym at home. He has some equipment which he uses to strengthen and condition the muscles of his upper body and lower limbs. George George is a trained health professional. He is a qualified nurse and a tutor at a nursing training school. He practiced as a nurse for about five years and has taught in the nursing school for the same number of years. A few years ago, as he travelled in the company of his colleagues and friends to a ceremony, their vehicle was involved in an accident that caused severe damage to his spine. He became paralysed as a result and has only recently regained some control of his bodily movement. He walks with the aid of a crutch but the effect of the accident limits his movement and physical exertion. George kept his job after the accident, despite spending about four months in the hospital and some additional months at home recuperating. George‘s father has a car which he sometimes gives to George to facilitate his 129 University of Ghana http://ugspace.ug.edu.gh movement on the university campus. He tells me that his colleagues at his place of work have been very supportive. He says that: At my work place because we were all like going up and down and then suddenly this thing has happened to one of them so it was like no, this can happen to anybody. So I haven‘t had any negative experience with any of them. In fact, at the hospital, they were so supportive. They were always coming there on a daily basis. And then back home, they were also coming around to visit me, to support me and all that. George and his wife were finalising preparations for their marriage when he was involved in the motor accident. Their plans were delayed by a couple of years to allow for his rehabilitation. They are married now and have a daughter. At the time of the interview, George was studying for his Master‘s degree. James James is an academic who also dabbles in real estate. He acquired partial visual impairment in his childhood but that did not inhibit his educational and career attainment in anyway. According to him, a lot of people knew his eyes were squinted but they did not know that his vision had been affected. As a young man, he learnt carpentry in his father‘s workshop and occasionally worked as a carpenter until he stopped when he entered the university. He obtained his undergraduate degrees and graduate degrees in Ghana and a second Master‘s degree from a Canadian university. He worked as a teacher in a secondary school and later joined the Ministry of Education as a programme officer. Subsequent to this, he obtained a faculty position in a university as a lecturer. When he suffered some seizures later in his adulthood, he was told by doctors that he had a degenerative health condition. The consequences of that condition later culminated in complications that required that one of his 130 University of Ghana http://ugspace.ug.edu.gh legs was amputated. My interview with James took place about eight months after his leg was amputated and so most of the disability experiences he shared with me were of his adjustment to his ‗new life‘, both at home and at his place of work. His superiors at work have offered to construct accessibility facilities to ease his movement and he has also made significant changes to his home for similar reasons. Even though he has a car and knows how to drive, he seldom drove because of his partial visual impairment. He has, however, made sure that some of his children and his wife know how to drive and that they can chauffer him around whenever necessary. James had made his post-retirement plans because he is due for retirement very soon but those plans have been affected by his newly acquired disability. He, however, told me that he does not worry about it much because his investments are enough to cater for his needs and that of his family, even if he does not get to work after his retirement because of his disability. He is married and has children and as he told me, ―they are all adjusting to the new situation.‖ Lower-class and Family Support (L/FS Category) The participants in this category were born into lower-class families but their families supported and pushed them up into middle-class status. All the participants in this section with the exception of Tony were born in rural areas and acquired their disabilities while they were living in the rural areas. All four are, however, living and working in urban areas now. Jacob Jacob was born in a rural area and acquired the visual impairment when he was about five years old. He believes that may have been caused by a measles infection he had at that time. 131 University of Ghana http://ugspace.ug.edu.gh His father was a security man and his mother was a petty trader. According to Jacob, both of his parents had very little formal education, if any at all. He has a brother who is also visually impaired. Jacob stated that, ―…my parents really were willing to ensure that at least, I and my brother who are visually impaired had the best of education and I really love that… they were willing to support us in education.‖ Jacobs tells of the difficulties he had as a child when he was sent to school. He did not start at an inclusive school and so was severely constrained in his academic pursuit as a child in the early years of his education. His parents, however, moved to Accra later and it was from that time that he was enrolled in a special needs school for the visually impaired. His father bought him braille writing equipment in his desire to have Jacob receive as much formal education as possible. According to Jacob, the equipment was very expensive but his father got it for him. His father paid for the machine in instalments. Jacob had his secondary education in an inclusive school and he continued to the university where he obtained a Bachelor‘s degree in Education. Jacob is a journalist, having had his apprenticeship in journalism while pursuing his undergraduate studies. He now works with a private media organisation. Jacob got married a couple of months after I interviewed him for this research, having dated his wife for about two years. Sam Sam was born hearing but lost his hearing when he was about nine years old. This occurred after he contracted cerebrospinal meningitis (CSM). Sam‘s father and mother were both farmers. His father had completed Middle School Form Four and his mother had had no formal education. He was the eighth of his parents‘ eleven children. According to Sam, when 132 University of Ghana http://ugspace.ug.edu.gh he lost his hearing, ―my family, my siblings all accepted me…I found it difficult to understand them.‖ His difficulty in understanding them was because of the communication barrier occasioned by the fact that no one in the family could communicate in the sign language. Sam says that he was in school before his impairment occurred and after he lost his hearing, he was forced to stay out of school for three years because of financial constraints on his parents. Sam‘s parents enrolled him in a special needs school after his father got some financial assistance from some associates of his. Later on, his father assumed full responsibility for his education. Sam added that even though his family was financially challenged, his elder brother who was in the university at that time always encouraged him to remain optimistic about his education and his future. After his BECE, there was no money for his secondary education but his elder brother objected to him being at home. That compelled Sam‘s parents to look for funds to enrol him in an inclusive secondary school. Sam says that ―I know my family didn‘t have but in fact, they did their best.‖ He says that whenever he came home on vacation, he tried to teach his parents and siblings how to sign in order for them to be able to communicate with him. Sam graduated with First Class Honours from the university and continued to acquire an LLM degree from a British university. He has worked with a number of NGOs and is currently working with another NGO that advocates for persons with hearing impairment. Sam is married and has two daughters. His wife is also hearing impaired. 133 University of Ghana http://ugspace.ug.edu.gh Akosua Akosua acquired poliomyelitis when she was about seven years old and that caused her disability. At the time of her birth, her father had travelled out of the country. She was raised in a rural area by her mother who was a petty trader but had no formal education. Her father was a teacher who later became an agricultural extension officer. At the onset of her disability, Akosua says her mother used to dig holes and make her stand in them, in her effort to get Akosua to be able to stand properly on her legs. Her family made sure she had as much formal education as she needed. She says she got the support of her family in everything she did. She added that, ―You had to do what all the others did. Even at home there was no discrimination. In my house, there was nothing like discrimination.‖ Secondary education was very challenging for Akosua, particularly so when her school lacked a regular supply of potable water. Together with her mates, she sometimes had to walk for about three miles to fetch water. Added to that challenge was the fact that because of her gait which had been severely affected by the effects of the polio, she sometimes accidentally fell and poured the water away and had to return to fetch it. As she put it: …you have to manage. Sometimes we go, half way, you fall down. You have to go back. You need water. I‘m not a man, I‘m a girl. And you know that time of the month you need water. Who should fetch for you? So I was doing it myself. Akosua has since trained to become an award-winning journalist. She has a Bachelor‘s degree from a Ghanaian university and a Master‘s degree from a British university. She has her own vehicle and has employed a driver even though she knows how to drive. Akosua is not married and has no biological children. She, however, has several adopted children with 134 University of Ghana http://ugspace.ug.edu.gh whom she lives. In her spare time, she offers media consultancy services to her church and other institutions. Tony Tony was born into a family that was not so well to do. When he was about six years old, he contracted a disease that caused his hearing loss. While he was on admission at the hospital, his mother visited him and became alarmed when he seemed not to be able to hear her nor speak to her. She alerted the doctors who checked on Tony and concluded that he had lost his hearing. He was later enrolled in a special needs school. Occasionally, he visited the school he attended prior to his hearing loss and was always received warmly by his former teachers and mates. In Tony‘s own words about his family, he said that ―they took good care of me‖ and that ―they tried to always make me happy.‖ He was sometimes exempted from certain chores at home by his family and given the support to obtain formal education. He wrote and passed his General Certificate of Secondary Education Ordinary Level (GCSE O‘ Level) exams but he could not continue his education beyond that. As employment opportunities seemed to elude him, he worked for a while as a miner in the illegal small-scale mining industry, popularly known as ‗galamsey’ before his mother who was not comfortable with that moved him to Accra for him to learn tailoring. Later, he enrolled in a short course at a British university and received additional training in sign language. Tony has served as president of the association for hearing impaired persons and has also served on the board of a number of advocacy groups. Tony has also participated 135 University of Ghana http://ugspace.ug.edu.gh in several international and local disability advocacy workshops. He is married to a hearing impaired woman and they have five children. One of his children is studying for a PhD degree in a Ghanaian university. Tony is currently a sign language instructor in a university, having previously worked in a factory and also anchored a television show. He lives with his family in their own house. Lower-Class and Lack of Family Support (L/LFS - Category) The participants in this section were born into lower-class families in rural areas and seemed to be neglected by their families. For Agnes, it appears her disability was not really to blame for the exclusion and neglect she experienced but Kofi‘s condition ensured he was stigmatised by his own family. Nevertheless, both are now middle-class through support they received from non-family associates, and in Agnes‘ case, a little more support from some family relations as well. I describe them as ―middle-class late comers‖, because they became middle- class much later in their lives, when they are compared with the other categories of participants. Agnes Agnes is kyphotic and was born in a rural community. Her mother passed away when she was very young and her father, who had been a farmer, died a couple of years later. She was raised by her maternal grand aunt who also raised her own direct grandchildren. Agnes believes she did not get much attention at home because both her mother and her maternal grandmother were deceased. This was, however, not peculiar to her alone. Her sister, who was non- disabled, also did not receive much attention. Agnes does not know exactly what caused her condition. She was, however, told by one of her late mother‘s sisters that she was born with 136 University of Ghana http://ugspace.ug.edu.gh ―something‖ at her back. Agnes says that when she was growing up, one of her mother‘s sisters who was married to a military man brought her to Accra and they sought for care for her at the military hospital. She says that she did not get very far in her formal education because she did not get much financial assistance to do so. Agnes says that at some point, she had to sell food items to support herself in school because her father could not support her. Much later, she attempted to sit for the General Certificate Exams. She wrote and passed in some of the subjects but lacked the resources to continue with the rest of the subjects. Agnes now works as a public servant and has risen to the position of deputy manager in her unit. She got the job through the assistance of a neighbour of hers who had observed her taking her domestic chores seriously. This was in the early 1980s, after several vacancies emerged in the public sector after the mass migration of Ghanaians to Nigeria. Agnes has two children, a son and a daughter. The father of her son and his family refused to accept responsibility for Agnes‘ pregnancy when it was reported to them. The family was particularly appalled that their son had had carnal knowledge of a kyphotic woman. According to Agnes, she heard that after her family visited the man‘s family, the man‘s family performed rituals to cleanse the family because their son had violated a taboo and needed to be purged. The father of her second child cohabited with her for several years until his demise. According to Agnes, she is sure the man would have married her legally but for constraints he had from his church. This was because he had been married before and could not secure a divorce from his first marriage because of ecclesial prohibitions. She has seen her son through the university and her daughter is still in the university. 137 University of Ghana http://ugspace.ug.edu.gh Kofi Kofi is achondrosplastic and was born in an urban area but he moved to a rural area with his mother when he was young. He grew up in the village and returned to the urban area when he was about 15 years old. His father was a chief but he passed away while he was still very young. He was thus raised by his mother who had no formal education. Kofi had several siblings since his father married several women. According to Kofi, he was asked on several occasions by his elder siblings and his friends to leave their company whenever he wanted to accompany them on trips or join them in some youthful adventures. Kofi says his mother told him when he was still young, after seeing him in the company of some other youths misbehaving that ―you shouldn‘t do what the tall people are doing.‖ Kofi says he did not really understand what his mother was trying to communicate to him but it was obvious his mother was cautioning him to stay out of ‗trouble‘ because he was not like the ‗tall people‘. At various times also, he was used as a mascot for his school during sporting activities. According to Kofi, he never received a visit from any of his siblings throughout his three years in the secondary school. He also stated that none of his siblings ever sat him down to motivate him or to encourage him to overlook his disability. His mother, however, continued to pay for his education but there was not much encouragement from her either. Kofi stated that, ―I was stuck with an illiterate woman who could only pay my school fees and tell you to learn hard. What would be her concern if you didn‘t learn?‖ The rejection he suffered from his family and friends pushed him into ―drinking alcohol, smoking maybe cigarette, or that thing they call social vices.‖ He added that: I was a quiet guy but because of that, I was emulating people like…ok, if you can smoke, I can also smoke. I wanted to get to where they are, that psychological 138 University of Ghana http://ugspace.ug.edu.gh thing, that smoking would also make me seem tall because people see you differently. Can you believe that they could sack me from their company? ‗get away from us‘… Part of his struggles also came from the fact that people in his mother‘s village often asked him bluntly whether his mother had sought for him from an oracle. He said: It is very painful that as you walk with your friends, everyone just stares at you. It would have been better if they were looking at you because your clothes were torn, even in the school, in the classroom, it occurs…if the teacher doesn‘t warn them to desist from those acts or if the people don‘t embrace you, if you don‘t take your time, you will commit suicide. He also added that, ―I didn‘t even know why they did that…when I found out that they were doing that because I am short, I said okay…there were times I could go to a park and cry over these things…a football park…when there was nobody present.‖ On numerous occasions also, a number of people asked him to forget about school and get into acting comedy. Kofi got a job after he completed secondary school, saved some money for his polytechnic education and found another job as an insurance broker. It was at this point that he was motivated by one of his superiors to pursue university education. Kofi has a Higher National Diploma and is now studying for his Bachelor‘s degree. Class and Disability Intersections The life histories presented in this chapter show different ways in which social class intersects with disability to define an individual‘s disability experiences. I must emphasise, however, that these four categories do not exist on a continuum or according to a pattern. Instead, they are distinct categories of participants independent of each other and only linked by two variables – class and disability. 139 University of Ghana http://ugspace.ug.edu.gh Class is the basis for some persons with disability to overcome some aspects of stigma and class is also the basis for some to suffer certain forms of stigma. The intersection of class and disability has implications for the experiences of persons with disability (Foster, 2017; Mpofu & Harley, 2006; Santos & Santos, 2017; Vernon, 1999). For the participants in this study, their middle-class status means that their experiences of disability and the stigma of disability are not the same as the experiences of persons with disabilities who are in the lower social classes (Baffoe, 2013; Kassah et al, 2014; Naami, 2015; Soldatic & Meekosha, 2012). That is not to say that the stigma that is attached to disability vanishes for middle-class persons with disabilities, rather, the stigma is still present but the manifestations of the stigma in their experiences vary according to the different social spaces within which these middle-class persons with disabilities and lower-class persons with disabilities may be found. The different manifestations lead to different experiences. Also, I must state that some individuals in lower social classes do acquire disabilities in their adulthood but the research questions that orient this study are such that such persons with disability and their experiences are beyond the purview of this study. It is for this reason that experiences of middle-class persons with disabilities who acquired their disabilities in their childhood and those who acquired their disabilities in their adulthood are discussed together with the experiences of persons with disabilities who were born into lower social class and acquired their impairments as children but have become middle-class in their adulthood. As I discussed earlier in this thesis, the stigmatising experiences of persons with disability known in the disability literature often captures experiences of persons with disability in the lower social classes. With this study focussed on experiences of middle-class persons with 140 University of Ghana http://ugspace.ug.edu.gh disabilities, I would like to discuss the intersection of class and disability using the social relational model of disability as the frame of reference. Situating Social Class in Disability Experiences The categories of participants identified in the study and the experiences of the participants within each category show that class position is an important factor in determining disability experiences in general as well as experiences of stigma emanating from disabilities in particular. The four categories essentially define the backgrounds of the participants and also show how their experiences of disability have varied by social class, family support and time of acquisition of the disability leading to different outcomes. Even though they are all middle- class now, the trajectory of their disability experiences have not been the same. This also has implications for some of their present stigmatising experiences. The social class factor tells very much in the kinds of stigma that each of them has and continues to experience, what they make of their respective disabilities and the experiences related to them and how they confront the stigma that they face. I will proceed to discuss how class matters in the stigmatising experiences of these participants in line with the social relational model of disability. As stated earlier, disability exists only in so far as there is a gap between an individual‘s functional capacity and the societal or environmental demands on that person. If an individual possesses the full capacity to meet the demands of society, there is no disability. For this reason, different people who may have the same impairments may not experience disability and its stigma in the same way. This is because they may have different capacities that will 141 University of Ghana http://ugspace.ug.edu.gh allow them to respond to societal demands accordingly. Class has been identified as a critical determinant in this process. Privileged class position offers leverage for people who have impairments to be able to respond to the demands of society in ways that people who do not have class privilege do. Privileged class positions allow middle-class persons with disability to challenge the stereotypes and stigma and their effects with their class-based resources (Drake, 1999; Hale, 2010; Vernon, 1999). The reverse is also true that without the benefit of a privileged class position, the stigma and social effects of disability are dire. The role of social class position in mitigating the stigmatising effects of disability for the participants in this study is immense. The middle-class position affords them the opportunity to narrow the gap between functional capacity and societal demand. The narrowing of the relational gap does not mean that stigmatising experiences cease. Instead, stigmatising experiences are softened in a number of the social spaces in which the middle-class persons with disabilities are found. Similar to observations by Riessman (2000), superior class positions offer stigmatised middle-class persons with disability the leverage to resist the stigma that persons with disability are confronted with. The outcomes of the quest to resist the stigma are also varied. The mitigation process does not occur at all times and in all places. There are times that the class position becomes relevant for which reason stigma is momentarily abated. Sometimes, middle-class persons with disability successfully negotiate their class privilege on top of their disability identity, making their class status their master status. In some other situations, class position becomes completely irrelevant and they are not successful. The disability identity remains the master status, thereby eliciting forms of stigma that overrule their social class position. Whether or 142 University of Ghana http://ugspace.ug.edu.gh not persons with disability will be able to use their class to their advantage, therefore, depends on the resources available to them by virtue of their middle-class status. For the M/CA participants (Jeanette, Matthew, Martha, Gabriel, Ezekiel and Daniel), their middle-class privileges from childhood afforded them the opportunity to get as much formal education as was available to them. Their families provided for them and supported them through school. In addition to that, they were not stigmatised at home and were not denied opportunities to participate in activities at home. They were encouraged to join mainstream activities in so far as their impairments were not a limiting factor. For this reason, the inhibitions that would otherwise have been experienced at home were non-existent. For these participants, their disabilities did not have an absolute restrictive effect on them, in the sense that it did not prevent them from attempting to narrow the relational gap of disability especially once they reached adulthood. The M/AA participants (Maame, Yakubu, George and James) were all career professionals before they acquired the disabilities. After they acquired the impairments, the challenge of pursuing their career ambitions, family intentions and other social goals appeared to introduce and simultaneously increase the relational gap of disability for them. For Maame, she had to quit her profession as a journalist but has since become a civil society advocate. Yakubu had to fight against the stigma at his place of work, particularly when some of his colleagues tried to use his disability as basis to stall his career progress. George is pursuing graduate studies after his partial recovery from the accident that caused his disability. George is taking the course a few years later than he had planned to do so. For James whose amputation is fairly recent, he has the opportunity to continue in his position and may get the opportunity to work 143 University of Ghana http://ugspace.ug.edu.gh even after his compulsory retirement. For all of these participants, however, their social class position has not been altered but rather, it has given them the opportunity to explore options available to them in order that their disabilities would not limit their abilities to meet social expectations. The privileges that they enjoyed have only varied in terms of the functional limitations that they now have, but not in terms of their personal goals or social engagements. Yakubu was promoted several times and George got married after his accident, signs that their disabilities did not deny them the privileges of career success and marriage that other persons with disability may not have as a result of the gap that exists between their functional capacity and society‘s expectations. The participants in the L/FS category (Jacob, Sam, Akosua and Tony) acquired their disabilities in their childhood and they all grew up in less privileged homes. Their background contrasts with participants in the M/CA category who were privileged from childhood and acquired their disabilities as children. The contrast tells in the kinds of support that the participants in the L/FS group received as they grew up. The families of the L/FS participants were not affluent enough to provide everything they needed for their education and other domestic and recreational needs. The resources that the families had were used to support the progress of the L/FS participants but at different stages in their lives, the need that existed for the participants appeared to widen the relational gap for these L/FS participants. For instance, Sam was out of school for three years after he lost his hearing. He only went back to school after his parents found the resources to support him. Jacob had to struggle in an inclusive school for a couple of years in his early years in school before he was admitted to a special need school. Tony, at one point had to engage in illegal small-scale mining in order to make ends meet. The limited resources seemed to increase their vulnerability but they have 144 University of Ghana http://ugspace.ug.edu.gh successfully moved up the class hierarchy to become middle-class persons, thereby narrowing the relational gap in their disability experiences. For this reason, the new class status of the L/FS participants offers them privileges that are similar to the privileges of the participants of the two middle-class categories. A similarity, however, between the experiences of the M/CA and the L/FS exists in the fact that both categories received a lot of support from their families. Though the support received is not of the same weight, they have nevertheless contributed to both groups‘ ability to narrow the relational gap. For these participants, their experiences mirror what Carnevale (2007) describes as the construction of a ‗protective capsule‘ by the families of these participants. This protective capsule allows for ―the control of information to the child and to the outside community‖ (p. 10). By this approach, the children who had acquired impairments were supported and equipped in ways that have allowed them to be able to narrow the relational gap of disabilities with their middle-class statuses. The participants in the L/LFS category (Agnes and Kofi) show visible signs of a wide relational gap that is being narrowed progressively, albeit at a very slow pace. Both Agnes and Kofi were born with congenital defects and the extent of their impairments became fully apparent as they grew. They had very little support from their families. For Agnes, it was not so much because of her impairment but rather because of what she describes as a weak social bond she and her non-disabled sister had with her family. Their parents died when they were still young. They were raised by extended family relations who, according to Agnes, did not seem to care much for them. Agnes was forced to discontinue her education because she did not have the means to continue and had no one to support her. She managed to find a job and 145 University of Ghana http://ugspace.ug.edu.gh has supported her children through school. Kofi‘s father who appeared to be the stalwart in his early years also passed away. His mother supported him through school but the neglect, exclusion and stigmatisation that he suffered from his siblings and community made him very vulnerable. He had emotional troubles that threatened to truncate his formal education. After several attempts and through the support of some of his associates, he has found a job and is pursing higher education. The experiences of Kofi in particular mirror the position of Harriss- White (1996) that persons with disability are invisible. The invisibility emanates from the unwillingness of their households to identify with members who have disabilities and the restrictions placed on persons with disabilities‘ social participation (Dalal, 2010). Their invisibility is accentuated by the fact that the courtesy stigma that their families experienced by virtue of their affinity with persons with disability (Francis, 2012; Goffman, 1963; Gray, 2002) sometimes reduces the willingness and capacity of the families to offer emotional, material and other forms of support to persons with disabilities (Dalal, 2010). These make it very difficult for people in the lower social classes to move up the stratification ladder into middle-class status. Within the relational gap model, persons with disabilities who are in the lower social classes have a weak functional ability and that compromises their ability to meet social expectations. The wide gap between their abilities and societal expectations is reflected in their experiences of stigma, which is often more aggravated than the experiences of middle- class persons with disabilities. It is obvious, however, that though Agnes and Kofi are now middle-class and enjoy several middle-class privileges, their middle-class privileges do not match up to the same privileges enjoyed by the participants in the other three categories. The lack of support and the personal struggles in their childhood mean that they have only recently broken through and are trying 146 University of Ghana http://ugspace.ug.edu.gh to strengthen their middle-class position. They experience many forms of stigma that participants in the other three categories may easily avoid, especially so when both of them do not command as much financial muscle with which they would narrow the gap rapidly and confront the stigma as the others do. These findings are consistent with the position of Drake (1999) that affluent persons who acquire disabilities, as in the case of the M/AA participants, or persons with disability born into affluence as it is with the M/CA participants, tend to be more able to adapt to the social and physical environment when they are compared to others. In this study, however, participants who were not born into affluence but received support from families are also able to adapt very well into the social and political environment. Dealing with ‘the Gap’ The intersection of class and disability allows the privileged social class position to confer strength to middle-class persons with disability to enable them confront the stigma they experience. The same intersection accentuates the stigma of lower-class persons with disability, as seen through the past experiences of Agnes and Kofi, prior to their receipt of the support that enabled them to move upwards into the middle-class and also through the documented experiences in the literature. According to Islam (2015), when stigma and social process of isolation exist at the family level of persons with disability, the stigma and social process of isolation at the community level tend to expand. That may explain the difficulties of Agnes and Kofi. Nevertheless, Agnes and Kofi enjoy middle-class privileges now, just like the participants in the other categories. Class privilege, for all of these participants, is a buffer 147 University of Ghana http://ugspace.ug.edu.gh against disability stigma. The strength of the buffer differs according to the nature of the impairment, the functional capacity of the individual together with situational factors that determine how well the individual is able to negotiate his/her disability and stigmatising experiences. The narrowing of the relational gap through class privilege negotiation often translates into reduction of dependence for these persons with disabilities and enhanced life chances. All the participants are decent income earners and majority of them have the means to cater for themselves and also support their extended family relations as is the case with Akosua, Jacob, Sam, Kofi, Gabriel and James. Some others like Jeanette and Maame have employed non- disabled people whom they pay. Yakubu, Matthew and Agnes have non-disabled subordinates while Martha, Tony and George have non-disabled colleagues at work. These persons with disabilities have shown through their economic position, coupled with their superior positions of leadership and power that they do not fit the quintessential imagery of the ―cap in hand‖ person with disability. From my interaction with the participants, it became apparent that their preferences also reflect their middle-class positions. Akosua goes for holiday abroad almost every year. Yakubu and Jeanette enjoy and patronise high-class theatre productions. The choices they make for their families, for instance choice of school for their children, also mirror a preference pattern that is not simple but close to being extravagant. The kinds of electronic gadgets, communicative devices and other forms of technology available to them, added to elite services they are able to access are suggestive of the prestige and power that high social positions confer on people. The nuisance that may be associated with begging by persons with 148 University of Ghana http://ugspace.ug.edu.gh disability does not hold true for these persons. Their ability to maintain such social position challenges disability stigma through the visibility of the middle-class persons with disabilities‘ potential and functional capacities. It is worthy of note that the double stigma that I observed among the participants occurs not across gender and disability identities. Rather, it occurs when lower social class and disability identities co-occur, consistent with the position of Söder (2009). Pal (2011) also states that being born into a lower social class position amounts to impairment in itself and being born with impairment is being born into stigma. The convergence of these two weak social identities often has debilitating consequences for any individual. This is because of the complexities generated by the intersection of the two subservient identities leading to a mixture of social, psychological, environmental and policy inhibitions, all of which disables persons with disabilities (Dalal, 2010). Agnes and Kofi had this form of double stigma but have since shed that through their upward mobility. Summary When disability intersects with middle-class status, the class identity competes favourably and makes a solid impression as the master status though not always. The prominence of the disability identity does not vanish entirely. It only vanishes under the right contexts which favour persons with disability, such as is the case when they are in the presence of the ‗own‘ and the ‗wise‘. The ‗own‘, according to Goffman (1963) are people who share in the stigma of the person who may be experiencing stigma. He describes the ―wise‖ as non-disabled persons who have developed a high awareness of disability and therefore do not stigmatise 149 University of Ghana http://ugspace.ug.edu.gh persons with disability. The ‗wise‘, with respect to this study, includes the family relations of persons with disabilities who do not ostracise them but rather seek to build a ‗protective capsule‘ for them, encourage and involve them in mainstream social activities. The lower social class and disability combine to create double oppression for the individuals. The effort and support that allows the middle-class to remain in their class are not available to the lower- class persons with disabilities. They therefore risk remaining in the margins and conforming to the disability identity. Stigma and its consequences are far more oppressive for persons in lower classes. Privileged class position is a means of escaping, confronting and eliminating some forms of stigma. Not all forms of stigma are eliminated by the privileged social class position. While some forms of stigma remain, others are diluted by the class position and completely new ones emerge to further entrench the disability induced stigma. What is obvious from all of these is that, different contexts of disability culminate in varying contexts and experiences of stigma. In the chapters that follow, I deal with the actual stigmatising experiences that occur despite the intervention of privileged social class positions of the participants. 150 University of Ghana http://ugspace.ug.edu.gh CHAPTER SIX ASCRIPTIONS OF INCOMPETENCE Introduction In this chapter, I present the ways in which the generic negative stereotypes and perceptions about persons with disabilities lead to stigmatising experiences of the middle-class persons with disabilities. These experiences occur because persons with disabilities are not disaggregated by their individual identities and by other social statuses of which social class features prominently. Persons with disabilities are all seen in light of the usual stereotypes of being financially, physically and intellectually incompetent and hence, they are treated as such. By this, persons with disabilities are broadly constructed in terms of what they are thought not to be able to do and that becomes their social identity within the myriads of social spaces in which they may be found (Jammaers et al, 2016). As Coleman (2006) posits, stigma has a powerful way of neutralising the positive qualities of an individual through negative stereotypes, thereby undermining the credibility of the stigmatised individuals and what they are able to achieve with their abilities. This occurs despite the fact that persons with even the most severe forms of disabilities are capable of being employed and deployed effectively in positions that may require the most complex forms of skills (Hughes & Avoke, 2010). Invariably, the dominant stereotypes are extended to all manner of persons with disabilities, without regard to their individual abilities. At the same time, other salient identities such as social class are often ignored and these serve as the basis for the stigmatisation of the middle- class persons with disabilities. These erroneous ascriptions based on faulty assumptions serve as the basis for this chapter. 151 University of Ghana http://ugspace.ug.edu.gh Disqualification from Society A number of the participants of the study told me that they often find themselves at the receiving end of sympathetic treatments by especially non-disabled people. Sometimes, some of the participants see no harm in the expression of sympathy by non-disabled people towards them and they even welcome it. Two of the participants, George and Tony, fall into this category. However, other middle-class persons with disabilities see a lot wrong with the show of sympathy towards them. The latter category, which includes nine participants, specifically Yakubu, Daniel, Kofi, Ezekiel, Akosua, Agnes, Maame, James and Jacob see the show of sympathy as a subtle attempt to remind the person with disability of his or her vulnerability and how precarious and unnecessary it is for them to accept and attempt to participate in mainstream social activities. Two participants appear to pick and choose when to accept the show of sympathy and when not to do so. For these participants, Jeanette and Gabriel, they accept the show of sympathy when it is empowering to them and they reject it when they consider it to be manifestation of patronage. Three participants, Matthew, Sam and Martha appear to have grown numb and indifferent to the show of sympathy. They appear to have resolved not to bother about it because to them, it has become an inevitable part of their lives. This show of sympathy towards persons with disabilities has been explained by Hehir (2002) and Tobias and Mukhopadhyay (2017) as emanating from the presumption that persons with disabilities ought to be shown pity, ahead of respect. Also tied to the show of sympathy towards persons with disabilities is the unmentioned belief that persons with disabilities lack the ability to perform specific tasks and for which they have to be helped. Akosua in responding to this issue of show of sympathy said: 152 University of Ghana http://ugspace.ug.edu.gh Sometimes you hear people say it, oh she is a ‗sick person‘, ―obi yarefoɔ” (somebody‘s sick person). I remember when my second relationship failed, my friend‘s mother said oh somebody‘s sick person, and the father said no, don‘t say that…and you wonder what they are pitying. You haven‘t asked for that, and it‘s not real, it‘s not genuine. Some people make it seem that the middle-class persons with disabilities ask for too much for themselves and from society when indeed they should be accepting the place for ‗disabled‘ people on the fringes of society. This happens even to people whose impairments occur late in their adult lives, and who were known to be very active in their spheres of operations. All of a sudden, they are seen as fragile and are ‗advised‘ to ―take things easy‖ even when they may not have shown any signs or readiness to withdraw from their pre-impairment routines, as is the case with James when he says that: Right now, everybody comes to me with pity. Everybody is sympathising with me, how I have been with them over the years and how my current situation has been and how I have to carry myself in the new situation. So some come to give me advice that I should take it kindly, I should not think about it. I go about my work. Sometimes when they come…, I can talk, I can write, I share ideas…and they say oh, with all this and you are still…and I tell them my mind is still working. When these happen, middle-class persons find it really difficult in accepting favours from people they interact with in their daily lives because of their perceived vulnerability and the stigmatising stereotypes it may reinforce. The sympathy shown is also an attempt by the non- disabled persons to reduce the supposed difficulty and strain that persons with disabilities are thought to be going through. Persons with disabilities do not even have to make any claims about their supposed difficulties. It is conferred on them, regardless of what they think about it. As such, they are often impressed upon not to get too involved in the struggles of survival. James was told by his colleagues not to ―stress himself‖ by attending a formal gathering at his 153 University of Ghana http://ugspace.ug.edu.gh place of work. His non-disabled colleagues told him that he should not ―worry himself‖ by attending. The people who confer this on them also make it seem that they do not expect much from these persons with disabilities. Yakubu experiences this with his family and says that, ―when I go home, when there are funerals in my home and I try to go, it‘s like, why are you trying to come? You know it‘s tough….‖ Such limitations effectively deny persons with disabilities access to certain social spaces. Coleman (2006) makes the point that for those who have only recently moved from a non-stigmatised identity to a stigmatised identity such as James, resisting this kind of stigma is very difficult, particularly when the stigma is reinforced by how the non-disabled associates of the persons with disabilities behave and act towards the stigmatised individual by the lowering of expectations for that individual. For Yakubu, if he stays away because his family has permitted him to stay away, it will contribute to the perception that persons with disabilities are weak and will further deepen the stigma associated with disabilities. He defies his family and attends these social gatherings as a way of proving to them that he is capable of attending the family meetings despite his disability. The difficulty in accepting persons with disabilities into full social participation is, however, clear in situations of this nature. For middle-class persons with disabilities, the reality of being asked to stay away is a tacit indication that the society or group can choose to make progress without you. You may be willing to participate because you may see your participation as an opportunity to be integrated into the group but the reality comes as a reminder of the emphasis society places on undesired bodily differences within its assemblage. 154 University of Ghana http://ugspace.ug.edu.gh At other times, the contaminated identities of persons with disabilities account for their seeming rejection from social spaces. Some people would not have persons with disabilities in certain places because disabilities are seen as a nuisance and undesirable within the particular context. With such people, their actions directly emanate from the tenacious conceptualisation of disability as a disdainful trait that ought not to be allowed in sane places. As suggested by Chouinard (1997), disability, for some, is enough reason for them to question persons with disabilities and inquire to know why they are in that particular space at that time. For this reason, the presence of persons with disabilities is undesired in several social spaces. Soldatic and Meekosha (2012), in accounting for why and how this occurs argue that the disabled body has an unruly and unacceptable appearance and that the trouble of having such corporeality ought to be the private burden of the individual who carries the flawed corporeality, not one for revered social spaces. The reason is that such bodies are symptomatic of a moral contamination that can compromise social spaces and any interaction that occurs within that space. As a transgressing body, the disgust that the ‗disabled‘ body evokes through normative evaluations renders the person with disability an unwanted individual within that particular social and interactional context. Akosua shares a classic experience she had at the Korle-Bu Teaching Hospital, Accra, when she went there with a colleague to see a medical doctor, not for health care but for an official assignment. The issue of her contaminated corporeality emerged. According to Akosua: I was trying to access the lift and the security man shouted at me…No!, you can‘t pass here, and my colleague said why? Do you know her? It was a tussle before he allowed us. So when we finished everything and we were coming down with the doctor, I just said doctor, talk to this person… 155 University of Ghana http://ugspace.ug.edu.gh To the security man, he was performing his duty of sanitising the hospital environment by restricting access to a person with disability because sometimes, persons with disabilities go to the hospital to beg for alms. Akosua, being the professional that she is, was treated as though she was a ―usual‖ person with disability unknowingly. Her treatment, however, shows the contempt that middle-class persons with disabilities whose social class statuses are not known are exposed to. Ezekiel also shares similar experiences he has had at corporate offices when he has gone there to visit senior administrators and other high ranking officials who may have invited him to come over for meetings. He says: I get that a lot from a lot of the offices. You go there and the first time the person sees you, they don‘t know you…You go to her office and you meet the security man or the secretary and they will look at you in a contemptuous manner and when you ask to see her, they make it seem that you have asked for something big. Oh I‘m coming to the manager, I just spoke to the manager and he or she has asked me to come. They will open their mouths in surprise and shock as if to wonder who you are. Sometimes, I will call the manager right in front of the person and tell him or her that I‘ve arrived but the security isn‘t allowing me to come, and then the manager will come down and sit with me at the reception for us to chat. The next time you go there, they see you and accord you respect. Sometimes when you go to an office, the first thought is that they don‘t think there is any big person here whom you can meet. So I always fight with some of the security people and the secretaries. Gabriel also recalls an experience he had when he approached a parliamentarian whom he was to see for an official purpose at the House of Parliament. They had never met before that day and according to Gabriel: When I got there, the security man at the reception did not allow me to go to the man‘s office and he didn‘t give me a seat. He made me stand there. It got to a point, as if that was not enough he asked me to come out of the reception and stand at the left… So I was there and I saw the parliamentarian coming and people were following him. So when I also approached, it‘s like he was tired. He also made some comment that was not palatable so I withdrew. He 156 University of Ghana http://ugspace.ug.edu.gh spoke as if I was coming to beg for money…do they generate any money there? … And I told him that honourable, I didn‘t come for that…one of his aides saw me…. So he spoke with him and asked him to call me to come and I said no I was not going…even if I was coming to you to ask for help, I would want you to see the help I am asking for as someone genuinely in need and not because I‘m a person with disability. Gatekeepers in other situations are likely to act in such manner all because persons with disabilities are not widely believed to be capable of instrumental engagement with non- disabled people. The presence of persons with disabilities around non-disabled people is seen as a nuisance and so regardless of who they are or what they have come to do, their disabilities are used as absolute reasons why they are not accepted and given access. These experiences are not limited to the professional space. It happens in the religious spaces as well. Akosua shares another experience where she approached a renowned businessman after close of church service at one of the branches of her church. She is not a member of that particular branch of the church and so was not known by most of the members of the branch, even though she was known by the businessman. As she got closer to the businessman, she said one of the officers of the church who was in close proximity to the businessman screamed at her to ward her off. According to her: When I went up the platform, there is an elder…eeigh! You know the way Ghanaians relate and try to push you when they see that you are getting closer to their star, you know, and somebody said oh stop that. She is Aunty (Akosua) and he said oh, I didn‘t know you are the one. You have put on weight…and I have never been able to forgive that man…his rich man is there and a sick person wants to get close to him, for what? In yet other instances, persons with disabilities are disqualified from social settings because people they may be required to interact with, particularly non-disabled people, are unsure about what that relationship or social engagement would mean for either party and subsequent 157 University of Ghana http://ugspace.ug.edu.gh events or outcomes. The uncertainties that characterise these associations are enough for some people not to allow persons with disabilities into certain spaces. This is particularly the case when middle-class persons with disabilities seek employment opportunities and as Sam put it: They won‘t say it directly but they will say, oh, go to the school for the deaf and teach. There are times they want to tell us but they are not bold enough, but you look at their attitude and you‘ll know what they imply… that is what people think, and also because you are disabled, you are only fit to work for the disability sector. Such responses, as received by Sam, serve to reiterate some people‘s perceived need for persons with disabilities to be separated from non-disabled people. Of course, they know you are educated and you have the appropriate qualification but they are unsure of how you would fit in there with them and so they will tell you to go to your kind. Jacob had a similar experience when he approached a radio station some time ago with a friend who was also visually impaired. They were told that there was no vacancy but they found out later that the radio station had taken some non-disabled people after they had been turned away. Some people will give what seem to be tenable reasons to explain why you cannot be accepted in a particular space but as Jacob puts it, ―sometimes, when you are told of a reason, you can also reason to know whether the reason is real.‖ It becomes obvious that the disability is the basis for the denials and rejections. Central to the experiences of persons with disabilities are the persistent beliefs that persons with disabilities are not capable of full social participation and that they only serve as a draw back if they are allowed in mainstream social and economic life. They are often seen as deviant, unproductive and unemployable, as has been found by Jammaers et al (2016). Having been given such labels, persons with disabilities are then denigrated, marginalised and pitied, 158 University of Ghana http://ugspace.ug.edu.gh as stated by Martin (2013). To those who stereotype and stigmatise persons with disabilities, the panacea to that is the belief that persons with disabilities ought to be moved out of the way. The reasons for moving them aside are varied. Some people would have persons moved aside out of unsolicited and what Davis (1961) describes as ‗patronising sympathy‘, particularly when the person with disability has not expressed any sign of discomfort at being in a particular social situation. According to Jahoda, Wilson, Stalker and Cairney (2010), stigma may also be motivated either by a sense of benevolence or hostility and as they add, both are founded on the effort to protect vulnerable persons. People extend sympathies and treatments of ‗help and care‘ that have stigmatisation embedded in them to persons with disabilities. The non-disabled people may not be very clear on what may or may not be acceptable within their interaction with persons with disabilities and as a result, their actions and inactions may manifest in stigmatising behaviour (Mik-Meyer, 2016a; Naami & Hayashi, 2012; Saal, Smith and Martinez, 2014). Ascription of Physical Incompetence A number of the participants reported that on numerous occasions, they have been deemed to lack physical competence and enabling bodies because their disabled bodies pose a challenge to conventional notions of strength and competence. This is especially the case for the four participants who acquired their impairments in their adulthood. Their experiences occur because their physical abilities were known prior to their acquisition of their impairments. Their impairments, however, are perceived to be developments that limit their physical abilities. For participants whose impairments were acquired in their childhood or were 159 University of Ghana http://ugspace.ug.edu.gh congenital, they grew up showing what they were capable of doing physically. Having shown themselves to be physically capable to the people around them, the perception of incompetence tends to come from people who have not known them for long, and so incorrectly assume that they are physically incapable. James discusses how his colleagues in other offices would be all sorry and asking why he would stress himself that much when he goes to their offices for official purposes. He says that: Sometimes, when I walk to their offices, they say I should have called them to come but I tell them no, it should still be that normal relationship… It is only that sometimes when I want to do certain things they feel that it is too difficult for me to do. So they try to advise me not to do it. The ‗normal relationship‘ James makes reference to is an allusion to things as they were before he had the amputation. The attempt at providing unsolicited support occurs pretty often, and for people who were known prior to the occurrence of the disability, there can be numerous support offers within a day, both at home and outside, as illustrated by James‘ experiences. He tells of how his young son would always want to open doors for him even though he always responds that he wants to do it himself, as a way of not relying on people as well as emphasising his independence. When James attended a formal gathering of his institution he works at, he tells how his colleagues repeatedly offered to support him climb the staircase. He declined their assistance but that did not prevent them from walking behind him ―in case of emergency.‖ For James, he tries very hard to resist the unnecessary support otherwise, he stands to lose opportunities in his career because of the perceived weakness that he has. In his words, ―…so you try to do things yourself but the stigma will still be there because people may think you can‘t do it, let‘s give it to somebody to do it.‖ 160 University of Ghana http://ugspace.ug.edu.gh James‘ colleagues appear to assume that the architectural barriers that James is faced with make mobility difficult for him. That is why they offer to assist him in that way. James‘ experience within the educational institute can be situated within the position of Horton and Tucker (2014, p. 76) that ―academic workplaces remain deeply, perhaps disproportionately, challenging, unpleasant and anxiety-inducing contexts for at least some disabled employees.‖ These difficulties do get in the way of the effectiveness and efficiency of persons with disabilities. Their challenges in dealing with additional constraints that non-disabled people do not have to deal with often makes them appear weak, less productive and incompetent. Another means of stigmatising middle-class persons with disabilities is by an absolute rejection of their capabilities. The presence of the impairment is often a reason for people to immediately dismiss the physical abilities of persons with disabilities and by extension, their instrumentality. Some people are simply dismissive of the ability of some persons with disabilities to live independently. Some persons with disabilities have the means to acquire the assistive technology devices and other mobility equipment that allows them to go about their daily routines without hindrance. Not everyone, however, realises the possible independence of persons with disabilities. For Ezekiel, one of his aunties initially declined to support his marriage to a woman who was also physically challenged. Her reason was that both of them will be in a wheelchair and in the unforeseen occurrence of an emergency, it will be absolutely difficult for both of them. Ezekiel tells me he argued with his aunt and even asked her why she had gone for a house help if she was really non-disabled and could do everything on her own as an independent person. He and his wife had no assistance and when that same aunt visited them after the birth of Ezekiel‘s first child, during her visit, Ezekiel 161 University of Ghana http://ugspace.ug.edu.gh fetched water with his tricycle and his wife also performed house chores using her tricycle. His aunt apologised to him after she saw how independent Ezekiel and his wife were. Yakubu shares a similar experience that was related to his work. He was a regional director of his institution. At a point, the minister of state responsible for his institution visited his region and was in conference with the regional staff. When Yakubu was introduced to the minister as the regional director, he stood up with the aid of his stick. According to Yakubu, when the minister saw him rise, the minister looked at him with surprise with that ‗subtle look‘, as Yakubu puts it. The minister is said to have asked, ―…the director? Are you able to work?‖ The minister got the answer he sought for during the discussions at the conference and after Yakubu‘s presentation at the event. For Yakubu, the ramifications of the stigma in his line of work were so grave, particularly when the office of director at the ministry beckoned. He had at this point risen from Regional Director to become Deputy Director at the Ministry. The stark reality of the stigma came to the fore. He had three other colleague deputy directors but he was senior to all of them. Yakubu tells me that because walking took a lot of his time, he sometimes asked his colleagues to represent him when there were meetings but according to him: When it got to the ultimate, they tried to use it against me. Two of us were going…in the civil service, seniority is…I came in one week before the other guy, so naturally, I was the senior. So they invited us to the interview. I don‘t know, somehow, they thought because of my disability, I wasn‘t qualified. This is part of the subtle discrimination. So, they invited my colleague alone… Yakubu did not take this kindly and protested, even seeking audience at the presidency for the correction. Eventually he became director after his disregard was overturned. What made him very sure about the fact that his disability had factored in his neglect was when the minister at 162 University of Ghana http://ugspace.ug.edu.gh the time, according to Yakubu, suggested to him that ―oh I thought because of your disability, this position which is stressful…‖ Yakubu reminded the minister how he had been regional director and deputy director at the ministry for about 20 years, all after the accident that caused his disability. When it mattered most, the disability became the basis for him to be disqualified outrightly albeit subtly. In circumstances of this nature, when there is competition for positions or when stakes are high, the temptation for people to consider one‘s disability as a limiting factor is very high, with the belief that having a disability means lacking an essential performance tool. Some of the most severe forms of ascriptions of incompetence come from families which can sometimes become the most stigmatising agent with its expression of frustration and lack of acceptance. This is as happened in the case of Ezekiel‘s aunt. Akosua also shared an experience relating to what one of her sister‘s said, though not to her. She successfully acquired a visa to travel to Europe and when her sister who had tried unsuccessfully to get the visa on numerous occasions heard about it, she is said to have remarked casually that, ―…you who wouldn‘t do any work koraa they have giving it to you. She said it to my friend. So my friend said eeigh, this is what your sister said, and I said well, maybe she didn‘t answer her questions well.‖ Akosua‘s sister assumed that Akosua would not be able to work because she is physically challenged and may not be able to exert much effort physically, unlike her who was non-disabled. Akosua‘s sister supposedly made the comment in jest but it had a stigmatising undertone. Even though Akosua‘s sister had never done anything or said anything to Akosua directly for Akosua to feel that she felt Akosua‘s impairment was a limitation, the comment made makes 163 University of Ghana http://ugspace.ug.edu.gh it seem that she may have the belief that persons with disabilities ought to be considered after non-disabled people who have the perceived ability to work and contribute positively to the progress of society are looked at and favoured. This is despite the fact that Akosua‘s sister is very much aware that Akosua is well educated, has a good job as a professional in Ghana, participates in numerous social activities and was not going to be idle on her trip. In some other situations, people are uncertain about the abilities of persons with disabilities. This makes them assume, on the back of the perceived weaknesses of persons with disabilities that the middle-class persons with disabilities will be unable to perform certain tasks assigned to them. The outcome is for such people to decide not to risk having persons with disabilities perform certain tasks with a view to not ―worrying‖ them. When Jacob applied to work at an organisation whose office was on one of the top floors of a storey building, he was asked to come to the premises. He got there and went upstairs. When the officer he was to meet arrived, he saw that Jacob was visually impaired and told him that ―if I knew you were the one, I would have asked you to wait for me downstairs.‖ For Jacob, this was ridiculous in the sense that he was seeking the opportunity to work at that organisation and here he was, being told that had he been known to be visually impaired, he would have been asked to wait downstairs, a finer way of suggesting that climbing the staircase would be a bother to you. The response of the officer was as good as suggesting that we cannot employ you because it would be a bother to you if you have to climb the stairs daily to work. Jacob, had himself not suggested any difficulty in climbing up the staircase but the officer had concluded that by virtue of his visual impairment, it will be difficult for him to climb up and descend. 164 University of Ghana http://ugspace.ug.edu.gh When Akosua applied to an organisation to be employed as a journalist, she says that at her job interview, she was asked by one of the people on the panel ―…are you sure you can do this?‖ The question was a plain attempt to make her realise that she had a disability that was going to interfere in her work. Eventually, she got the job but it was obvious initially that some people did not think she was capable of working in that institution because she had a disability. These instances, similar to findings from the study by Paterson, McKenzie & Lindsay (2012), show some of the subtle ways in which stigma place restrictions on middle- class persons with disabilities‘ ability to get employed. Gabriel had an experience when his supervisor assumed he would be unable to lock the door behind him after they had gone into the supervisor‘s office together. For Gabriel, his problem with situations of this nature is as he puts it, ―…when they are to think for me in terms of what I can do and what I cannot do.‖ He is challenged when people assume that his impairment limits his functions, for which reason they wonder what he can do or will be unable to do on his own. People wonder about what he can do or otherwise because he uses two crutches. Some people assume that since both of his hands are used to hold the crutches, he will find it difficult to do other things with his hands while he holds the crutches. Recounting the experience, Gabriel said that: I entered his office, I was following him so he opened and then he entered and I entered. So I had to lock the door behind and I had to pick the key for that and he said but can you do that? You leave it, let me come and do it. So if someone is sitting down thinking that it would be difficult for me to pick a key from a door, how do you expect that person to give me the opportunity to go and teach?. In this particular situation, Gabriel admits that his supervisor did not do that with malice but because the supervisor ―thought he was rather helping me.‖ However, the supervisor‘s action 165 University of Ghana http://ugspace.ug.edu.gh is indicative of what he really thinks about Gabriel‘s abilities – that he may be incapable of locking a door behind him. That is stigmatising enough for Gabriel. The existence of such a perception could as well mean that the supervisor assumes that there may be some other things Gabriel might find difficult to do. Other people might also have similar perceptions about Gabriel‘s abilities as well as that of other middle-class persons with disabilities. In the long run, these persons with disabilities will face discrimination, with the perpetrators not even realising what they might have done. Gabriel‘s challenge with the conduct of his supervisor is similar to findings of Philips (1990) when he observes that cultural notions about the abilities of persons with disabilities, and their appraisal as ―damaged goods‖, lead to the perpetuation of stigmatised treatments even when persons with disabilities are the best judges of their own abilities. Persons with disabilities‘ assumed lack of competence have also been found by Taub et al (1999) when sometimes, persons with disabilities are assumed to be suitable for jobs that require little exertion because their bodies are unable to exert enough effort. This belief is often the reason why persons with disabilities experience negativity at their places of work (Athanasou, 2014; Saal et al, 2014). This perceived lack of physical competence occurs with persons with disabilities‘ perceived lack of individual autonomy and what is seen as their dependence on others for functional participation. Invariably, persons with disabilities are not trusted to be able to perform legitimate social functions. Naami et al (2012) also state that it is not uncommon for the abilities of persons with disabilities to be doubted in Ghana. The doubts become basis for the stigma and discrimination that they experience. Given the often entrenched beliefs that persons with disabilities are weak and hardly able to support themselves, middle-class persons with disabilities are also thought to be unable to meet the 166 University of Ghana http://ugspace.ug.edu.gh physical demands of full social participation. This brings several issues to the fore. There is the belief that the middle-class persons with disabilities are physically weak and that they ought to be supported physically in order for them to be able to join in some, but not all social activities. Those who have this belief sometimes think they are supporting the person with disability but in fact, persons with disabilities are stigmatised as weak persons and that is why the supposed helpers believe that persons with disabilities need constant assistance. Invariably, the compromised bodies of persons with disabilities interfere with social relationships and the perceived competence of these persons with disabilities (Loja, Costa, Hughes & Menezes, 2013). Ascription of Intellectual Incompetence The prevalence of the stereotypes of persons with disabilities as uneducated, uninformed and unskilled means that such traits are extended to middle-class persons with disabilities as well and the participants of this study have encountered such experiences on numerous occasions. Stigmatising experiences of this nature, however, are more likely to be experienced by persons whose impairments occurred in their childhood, rather than in their adulthood. The participants whose impairments occurred in their adulthood were less likely to be thought of as intellectually incapable. This is because their intellectual abilities which are apparent to their social and professional contacts are separated from their functional abilities which may have been reduced by the impairment. While they may be thought of as physically incompetent, they are hardly perceived to be intellectually incapable. For participants who acquired their impairments in their childhood, their experiences of being assumed to be 167 University of Ghana http://ugspace.ug.edu.gh intellectually incompetent stems directly from the stereotypes that persons with disabilities have low educational attainment and are uninformed. Jacob recalls several instances of such treatment where he has been completely ignored by service providers who would rather interact with his guides even as he stands right there. He recalls an experience at a bank where the attendant at the bank would ask his attendant, ―What does he want?‖ even when Jacob is present. Jacob is visually impaired and that, to the attendant at the bank meant that he would struggle to comprehend any sane discussions that ought to take place between her and Jacob. The logic that informed the attendant‘s conduct seems strange as she proceeded to ask Jacob‘s assistant, ―does he thumbprint?‖ The irony is that sometimes, Jacob goes to these banks with some taxi drivers he has made friends with, some of whom did not complete their basic formal education and can hardly comprehend the requirements of banking services in order for them to assist him. According to Jacob: …so if I should go to the bank, now I want to check my account, my guide is standing there with me…most of the times they even write, give it to your assistant to tell you, meanwhile maybe I don‘t want the person I am walking with to know how much I have, but they will write and give it to the one you are walking with to tell you. There have been times you go for money and then they know it‘s you but, after everything has been done, they give the money to the one you are walking with. Why would you? My own money...even if I can‘t count, you give it to me and let me give it to my assistant, but you have given it to my assistant, it means nothing has come into my hands but if you go to talk about it they will say you are too known or you worry people too much... Cahill and Eggleston (1995) label the situation where people deal and interact with guides and companions of persons with disabilities rather than the persons with disabilities themselves as ‗non-person treatment‘. Jacob‘s visual impairment means that he does not have control over his own transactions and the non-person treatment he experiences occurs because the service 168 University of Ghana http://ugspace.ug.edu.gh providers deem him to be incapable of participating properly in the transaction, so they rather resort to engaging his companions instead. Jacob also recalls another experience of this kind at a hospital he attended. Sometimes, the ascription of intellectual incompetence is made by the guides themselves who assume that the person with disability may not be able to articulate his or her issues well enough and so requires assistance. Again, there is the underlying belief that the visual impairment robs an individual of sound intellectual judgement. Jacob says: Sometimes you go with a guide and the guide enters the consulting room with you and then he/she will sit down then doctor will begin asking you what‘s wrong? so if there is something that you don‘t want, because health issues it is not everything that you have to disclose. So the person will be sitting instead of perhaps excusing you, going to sit outside or something even sometimes doctor will tell you sit down and wait for him but it is about my health we are coming to discuss. If I have certain health condition and I don‘t want anybody to know then the person is just sitting there. Interestingly, sometimes, the service providers also share in this belief and play along these ascriptions. They would not correct the wrong but would also reinforce it through their actions and inactions. Additionally, the right to privacy for such persons with disabilities are also compromised. Jacob additionally tells of instances at the hospitals where medication meant for him will be handed over to his guide and then the dosage will be read to his guide, as if to say, Jacob will be unable to determine which drug ought to be taken at what time and in what quantity. According to Jacob: …sometimes you go, they give the medicine then they say to the guide when he goes, he will take this medicine at this time, then I usually say which one? because those I go to the clinic with, they don‘t even stay with me. So you are teaching the person that this is what I‘m going to take, what if the person forgets? So usually when I hear that, I ask, is it mine? He says yes then I take it…okay let me feel it. Then he will tell me. Then I ask him this one when should 169 University of Ghana http://ugspace.ug.edu.gh I take it? Should I eat before? Because even the person that you are asking he wouldn‘t give all the information. The person wouldn‘t ask you any question. In other situations where the intellectual abilities of the middle-class persons with disabilities are called into question, their academic qualifications are perceived to be unreal. It is the expectation and thought of a number of people that persons with disabilities hardly pursue education to higher levels, as has been found by Athanasou (2014), Eide (2012) and The World Bank (2008). This is because of the fact that for a large number of persons with disabilities, formal education is out of their reach and even when they acquire formal education, they hardly go beyond the basic level. Those who go beyond the basic level do not usually reach the highest levels. In some other instances, persons with disabilities are refused admission to schools because of their disabilities (Eide, 2012). With this entrenched perception lingering on in the minds of several people, any person with disability who shows up anywhere with high academic qualifications is looked upon with some misgivings because they consider it unusual for persons with disabilities to acquire education to the highest level and perform creditably well. This can also be tied into the argument by Erickson et al (2014) that the most important constraint against the employability of persons with disabilities lies in the fact that persons with disabilities tend not to possess the requisite skills and the needed preparation that will qualify them for jobs in mainstream society. Sam, a hearing impaired person, encountered such a situation in an office he had gone to in search of a job: I was going round with my file, with my academic certificates and all. I entered office to office. I went to one office, it was a government institution. The one responsible looked at my CV and he asked, is this certificate for you? I said yes. He looked at my CV and looked at my face. He asked again, are you sure this certificate belongs to you? I said yes. Do you know what he told me? ‗Go to the deaf school and look for a place to teach‘. You see, when they look at the disability, they think I cannot do anything. I have a good CV, I‘ve completed the 170 University of Ghana http://ugspace.ug.edu.gh University of Ghana, I paid my fees, you are aware, but when looking for a job, people look at my disability, not my certificate, thinking that once you have a disability, you cannot work, you cannot do this and that is not true. It happened in a lot of the organisations that I applied to, the same thing. That is the reason why on my CV, my school, background, everything is there, where I went to JHS and SHS, I have all of them there but when someone sees my CV, whatever certificate you have, they don‘t care but they care about the disability. That is why I said we face a lot of challenges. So a lot of our people don‘t even want to bother themselves to look for work. In addition to the disbelief of a person with disability having such high qualifications is the perception that persons with disabilities ought to work in the disability sector. By this, whoever said that to Sam, was trying to say that there should be separation between non- disabled people and persons with disabilities. Actually, Sam graduated with First Class honours for his Bachelor‘s degree from a Ghanaian university and has a Master‘s degree from a reputable British university. Sam‘s situation, much like that of a number of the participants in this study is, however, contrary to observations made by Sevak et al (2015) when they posit that persons with disabilities who have higher qualifications stand a greater chance of being employed among persons with disabilities. Their argument is on the premise that higher education mitigates some of the stigmatising effects of the disability but this may not be entirely applicable in the Ghanaian society because of the stigma of disability. Any non- disabled person with credentials similar to Sam‘s will be highly sought after but for some reason, Sam is told to go and teach at the school for the deaf, an indication of the non- acceptance of persons with disabilities in mainstream society. Hogan (1998, p. 79) in a study of hearing impaired persons posited from an inference on their experiences within the society that ―a deafened person becomes stupid because they are regarded as not having sufficient basic intelligence to participate properly in daily 171 University of Ghana http://ugspace.ug.edu.gh interactions.‖ Hogan‘s statement may be in reference to hearing impaired persons but it is applicable to all categories of persons with disabilities as they are thought to be incapable of social participation because of their disability. The frustrations that such stigmatising occurrences of denial, doubt and rejection engender are summed up by Jacob when he says: The most challenging aspect is that after we have been able to go through the educational ladder with our seeing colleagues or other friends who are not persons with disabilities struggling, people reading to us because we didn‘t have those documents in braille those days. After you are out people still think that you cannot work and so you find it difficult getting employment. Meanwhile you went to school with the same persons and they even had better facilities, and you‘ve been able to complete with all of them, sometimes in the same class, sometimes even a better class and yet when it comes to the field of work people will prefer those without disability to those with disability. Gabriel also recalls another situation when he was given a job at a district assembly. The District Chief Executive (DCE) in conversation with a colleague stated that they had been sent a ‗handicapped person‘ and then wondered whether Gabriel ―would be able to work.‖ After three months of working at the district assembly, he was recommended to be made a government appointee at the assembly. As happy as Gabriel is in talking about this, he realises that he got the opportunity that many others are unable to find in order for them to prove themselves and fight off the stigma about the intellectual abilities of persons with disabilities. Not everyone, however, gets the plaudits for being able to counter the tide of stigma like Gabriel did at the district assembly. Some persons with disabilities get the opportunity to work and show what they are capable of doing but that does little to shake off the disability stereotypes and stigmatising experiences that they face. For Yakubu, who was almost always reminded of his disability, his disability was always an opportunity for people to target him and question his identity first, and his temerity to attend meetings and official gatherings. 172 University of Ghana http://ugspace.ug.edu.gh Yakubu, the only exception from the four M/AA category of participants to report of being assumed to be intellectually incapable had these experiences because his social and professional contacts changed regularly as he was transferred from one office to another, and from a regional directorate to the Ministry. He notes: They see you and it‘s like, this disabled, what are you doing here? If I noticed that you‘re trying to…I‘ll tell you…do you have a problem? I struggle to walk but I‘m using my brains. I‘m a professional, at least, I still can think straight… For middle-class persons with disabilities, it is all about confronting the stigmatising treatment and attempts by people to reduce the worth of their personalities and their accomplishments. Some people would rather exaggerate the disabilities rather than the worth of the individuals or their accomplishments. Any lax latitude towards the stigmatising treatment and attitudes would mean that you would be shunted aside or taken for granted. For Yakubu, his was to confront anyone he thought was showing an attitude that smacked of the disability stigma. He says that: When I was at the head office, my colleagues are to go to a meeting, I‘m the last person or I would go ahead because I know that I had to walk with the stick and go find a stick, and so and so forth or they see you and it‘s like, what is this guy doing here? That‘s how they think until you start delivering, you present a paper and they know that it‘s not your legs, it‘s your brains. Non-disabled people do not have to remind people of their intellectual abilities nor their professional competence, neither do they have to advertise their academic qualifications but middle-class persons with disabilities are forced to do these repeatedly as they seek to justify 173 University of Ghana http://ugspace.ug.edu.gh why they deserve their jobs, their achievements and entitlements as well as their places in social spaces. These do not, however, come easy all the time. This occurs despite the fact that some of these middle-class persons with disabilities have top academic qualifications from reputable institutions, worked with credible organisations on their own merit and have incomes that can match non-disabled people‘s income on every level. In the end, middle-class persons with disabilities often find themselves in the unpleasant situation of being considered as uneducated, uninformed and incapable of lucid reason. The stigmatising label that disabilities carry is placed on them and they are treated as such by many in society. For some people, the presence of one form of impairment is a sure proof that there are several others that an individual carries. For this reason, they will act towards the individual as though he or she lacks the ability to handle the simplest forms of information or perform the least demanding intellectual activity, as stated by Hogan (1998). It is important to note also, that the experience of being assumed to be intellectually incompetent also depends on location and the people with whom the middle-class persons with disability interact. The more familiar the people around middle-class persons with disabilities are with their intellectual abilities, the less likely they are to stigmatise them on the basis of their intellectual abilities. That is why Jeanette, for instance, has been given a responsibility of being a preceptor for interns at her place of work. George, after his medical rehabilitation, went back to assume the new position he had been promoted to. Middle-class persons who encounter new people in new spaces are thus more likely to be stigmatised, as was reported by Jacob, Sam and Gabriel. 174 University of Ghana http://ugspace.ug.edu.gh Ascription of Financial Incompetence The prevalence of the stereotypes about disability also leads to the perception that persons with disabilities are economically challenged. For middle-class persons with disabilities, this is often incorrect. Their financial abilities mean that they can afford everything a middle-class non-disabled person would also be able to afford. Middle-class persons with disabilities, just like non-disabled middle-class people, also have the taste for sophisticated goods and services. In principle, middle-class persons with disabilities do not beg for financial assistance because they do not need it. However, some people see disability as being synonymous with poverty. As a result, they would act in ways that would seem to suggest that every person with disability ought to be cared for financially and given economic assistance. Eight out of the 16 participants shared different experiences about how different people they came into contact with acted towards them in ways that suggested that every person with disability has financial challenges, needs some financial support, had to be given some sort of financial support and ought to be grateful for same. Jacob had an experience one morning at a bus stop, as he stood there hoping to find some assistance to enable him cross the road. He tells me that as he stood there, a young man approached him and literally shouted at him: Take this 50 pesewas and go and buy some water with it and I said I don‘t need your money. All I need is I want someone to help me cross the road. And he says oh okay sorry and he helped me cross the road. When we were going I told the person that when you meet somebody, ask the kind of help the person need before…Then he said he thought he was doing the will of God or something like that. And I said even the way you were doing it…you were like take 50pesewas and go and buy some water, meanwhile I was coming from work. 175 University of Ghana http://ugspace.ug.edu.gh The young man simply assumed that Jacob was a beggar who had placed himself at that spot in search of alms. The young man‘s actions are characteristic of what a number of people also see as the sacred duty of doing the ―will of God‖ by helping the poor and needy. Just because you have a disability, it is assumed that you are poor and needy but this was not the case of Jacob. He needed assistance but what he sought for was not financial in its nature. Ezekiel also had a similar experience at a transport terminal. He says a certain ―responsible looking man‖ approached him and tried to offer him money. Ezekiel says he was sure the man was not going to offer him ―coins‖ and believed the man‘s gesture was out of respect but before he could say anything in response to the man, a woman who stood close by said to the man, ―sir, don‘t worry yourself oh, this man is okay and isn‘t going to accept the money you are giving him oh.‖ Ezekiel tells me he told the man that ―thank you very much, somebody needs it more than me so can you please give it to someone else.‖ Like Jacob, Ezekiel‘s presence on the street at that material moment was interpreted to be the presence of another person with disability who was in search of money, and who for the sake of the disability had to be helped. The belief that persons with disabilities are poor translates into the belief that they are unable to cater for themselves on their own. For this reason, a number of people do not trust the ability of persons with disabilities to independently take care of themselves and their dependents. For Tony who is hearing impaired, the parents of his first wife who is now deceased were opposed to his marriage to their daughter initially because as Tony put it ―…they wanted their daughter to marry a hearing person since a hearing person was more likely to be successful and responsible than a deaf husband.‖ The basis of her family‘s opposition comes down to the stereotype that persons with disabilities are not economically 176 University of Ghana http://ugspace.ug.edu.gh independent to sustain themselves and their families. The family would rather their daughter married a non-disabled person who was more than able to support the household, rather than seeing their daughter who had a disability being stuck in a marriage that was not economically viable. Sam had a similar experience when he wanted to marry. He says: …her parents also doubted. They were also thinking that if…I give my beautiful daughter to a deaf person, he can‘t take full responsibility for her so they doubted until they saw that I have a future. They doubted but now they have seen that I am able to take care of their child and now, they are happy. The consequence of the supposed inability of persons with disabilities to take care of themselves economically also occurs when persons with disabilities join public transport. Middle-class persons with disabilities are taken as economically challenged and that makes co-commuters offer to pay their transport fares for them. Jacob does not have a car and so uses public transport when he is going to work. He recounted an experience which appears to be quite frequent. He says: When you sit in the trotro and somebody would like to pay for you and people will go and say it somewhere else that they‘ve been paying your lorry fare for you and sometimes it‘s not comfortable. Apart from them going to say it, sometimes you think that even the person who is paying for you, you are even better than the person in terms of even finances, but because the person thinks that you are a person with disability, oh let me pay for you. It is not bad someone doing you good but sometimes it looks embarrassing. It is not the act of people who offer to pay for him that bothers him. After all, non-disabled people sometimes pay the fares for their non-disabled acquaintances when they meet on public transport. It is the embarrassment of being considered to be poor and needy that bothers him. For middle-class persons with disabilities, their only identity regardless of their other social identities is that of a poor person and as James puts it, ―that is the notion because 177 University of Ghana http://ugspace.ug.edu.gh when people are begging, cripples are begging, they see everybody as vulnerable.‖ This also brings the dominance of the disability identity as master status to the fore. Once you have such an identity, it becomes difficult for any person with disability to extricate himself or herself from the penalties of having that master status of disability. In some other situations, middle-class persons with disabilities are offered free services even when they have not requested for it or even when they decline any such offers. The thought behind this is that persons with disabilities are perceived not to have enough to take care of themselves so, rather than taking money from them, service providers and facility managers would rather have them access the service for free. James once visited a heath facility that charged GHC 0.50p for use of its sanitary facility. He says: When I was going to the gents and I wanted to pay, the woman said I shouldn‘t pay, meanwhile I am capable of paying but she saw me as disabled. I was capable of paying the 50pesewas, just 50 pesewas. She said no, don‘t pay. Such offers are made under the assumption that every person with disability is economically challenged. While it may be true of several persons with disabilities, such behaviour demeans the attainments of these middle-class persons with disabilities, as they struggle to identify themselves not as beggars or poor people. With such experiences happening on almost daily basis, it is almost impossible for middle-class persons with disabilities to dress or appear casually and walk outside because they are more than likely going to be considered as beggars or pariahs. Any middle-class person with disability who chooses to dress casually does so knowing what he or she might come up against. Gabriel, being aware of this, is very particular about what he wears in this regard. In situations where he chooses to dress casually, he knows what he may come up against. The association between disability and poverty exposes 178 University of Ghana http://ugspace.ug.edu.gh middle-class persons with disabilities to such treatment. For Akosua who sometimes finds it difficult to identify herself as the real person that she is, the career woman and journalist, she says she usually gives people her name without her first name, which a number of people who know her may not even have heard of. She, however, says that ―…when it‘s becoming a little bit serious, then I will tell you my name is (full name).‖ Once they realise who she really is as the reputable journalist that she is, the stigmatising treatment eases away. According to Maritz & Laferriere (2016), persons with disabilities often tend to be unemployed or underemployed and so, they often lack the capacity to assume greater control over economic aspects of their lives. While this observation may be true of several persons with disabilities, particularly those in the lower social classes, they are often erroneously extended to all other persons with disabilities. It is for this reason that the participants of this study, and many people like them encounter situations where they are taken to be economically challenged or beggars. Middle-class persons with disabilities who acquire their disabilities are often less likely to be assumed to be financially incompetent. For Maame, who was a journalist prior to her acquisition of the impairment, George, a health professional and Yakubu, the civil servant, their financial positions were almost likely assumed to be decent. James‘ experience of being thought of as financially incapable occurred with a space he had no prior encounters in. he was not known and that exposed him to the usual disability stereotypes, the basis for his stigmatising treatment. Ascription of Social Incompetence Disability is the reason why several people are questioned on their claim to parenthood. Parenthood is considered to be out of their reach because persons with disabilities are thought 179 University of Ghana http://ugspace.ug.edu.gh to be dependent on other people and so having children would add to the troubles of whoever is already supporting the parent who has a disability. This is especially the case for female middle-class persons with disability, as was reported by Martha and Agnes. Both acquired their impairments in their childhood. The realities of such questioning of their ability effectively undermine middle-class persons with disabilities. For Martha who went to the hospital after she became pregnant, her pregnancy meant she had overstepped the limits for persons with disabilities. When she got to the hospital and met the nurses: I told them I was a deaf person, they were surprised and they began to speak…’mumu’ person and you love sex that much? but I asked…but madam why are you saying that? Are you saying that deaf people cannot have sex? We are not different people…There is no difference between you and me…we are human beings just like you. To the nurses, and many others like them, it is out of place and surprising for a person with disability to engage in romantic relationships and sexual activities let alone get pregnant, as if to say, pregnancy is for some other category of humans, not your kind. Scior et al (2013), in explaining situations of this nature point to the myths about persons with disabilities as being asexual and lacking the capacity to form meaningful relationships. Of course, the remarks made by the nurses discreetly point to the fact that persons with disabilities are not allowed to do the things ‗normal people‘ do, because they have a mark of difference, a reminder of the tainted identities they carry through their disability and that which is not ignored by society. To Ablon (2002), such conduct by health workers show their ignorance about the true nature of some disabilities and as Kim (2011) says, the assumption of all persons with disabilities being asexual is a myth. Ablon (2002) further adds that it is the health workers‘ lack of proper understanding of the disability that lets them question the situations needlessly as they act in 180 University of Ghana http://ugspace.ug.edu.gh unusual ways towards persons with disabilities. Martha again recalls how some people who find out that she is married will often retort that, ―…deaf people too do you know what love is? They feel that we are nothing, that we are not human, they even think we cannot even marry, because of deafness, I cannot even do anything…‖ Ezekiel recalls another experience he had at the hospital when his wife gave birth to one of their children. The behaviour of some of the nurses towards him and his wife made it pretty apparent that they were seen to have crossed the boundaries of disability into a different area. Ezekiel says that they make it seem that: It‘s like it‘s a crime for you to get pregnant as a disabled woman. They see it as taboo and when you give birth, they will pour compliments on your child and ask of the child ever day but I don‘t know whether they thought your pregnancy would result in the birth of an animal or a tree or whatever. To Ezekiel, the continuous compliments were really acts of patronage from the nurses who were expressing both surprise and delight that an unqualified body had been able to conceive and deliver a normal living human being who does not have any disability. Davis (1961) describes this as ‗fictional acceptance'. This refers to the situation where people who may not be too close socially refrain from acting in ways that may make it seem obvious that they have low expectations of the stigmatised individual. The social encounters are mediated by fictitious assumptions of equality and normalcy. Tobias and Mukhopadhyay (2017) posit that the lowered expectations on especially women who have disabilities emanates from the belief that these women such as Martha and Ezekiel‘s wife do not have the bodies that would allow them to play their gendered social roles as expected of women in their societies. It may be considered improper to act towards persons with disabilities in a disdainful manner but in their private thoughts, these social actors may harbour negative thoughts about the persons 181 University of Ghana http://ugspace.ug.edu.gh with disabilities. While it may be difficult to know exactly what the nurses genuinely think about Ezekiel‘s wife, it could be inferred by comparison between how they acted around other mothers and how they acted around Ezekiel‘s wife. In Ezekiel‘s judgement, the nurses seemed to overdo things around his wife. The other female participants did not report of such experiences. Jeanette had a daughter in the same facility that she works so the health professionals who attended to her were her colleagues and knew her. Akosua is not married and has not considered child bearing yet and Maame had ended child bearing and had no intentions of having any other children. The claim to parenthood appears, also, to be more of a challenge to females than it is for males because none of the male participants reported any such issue, even for the participants who acquired their impairments in their childhood. The consideration of pregnancy and motherhood as being nominally removed from persons with disabilities may be explained through the arguments of Kasiram and Subrayen (2013), Nario-Redmond (2010), Shakespeare, Gillespie-Sells and Davies (1996) and Vernon (1998) who argue that persons with disabilities are sometimes asexualised and stripped of their gender identities. Being asexualised also means that individuals are considered to be undesirable, unworthy of marriage, not good enough for sexual relations or reproduction (Kim, 2011; Pal, 2011; Tobias & Mukhopadhyay, 2017). According to Santos and Santos (2017), this occurs because of the lack of specialised information on persons with disabilities‘ sexualities, a situation which leads to gross ignorance about the sexual competence of persons with disabilities and sometimes even among health professionals. They add that such ignorance can also breed fear about the possible consequences of persons with disabilities‘ 182 University of Ghana http://ugspace.ug.edu.gh engagement in sexual activities. They are made to feel that sexual life and parenthood ought not to be their interest. Disabled and Disadvantaged by Society The stigma experienced by middle-class persons with disabilities accentuates the structural deficiencies that they already have to contend with. The outcomes of such stigmatising experiences therefore become very disadvantageous to the middle-class persons with disabilities. Though they have the requisite education, qualification and competences, access to employment opportunities and social benefits sometimes become a challenge. Even when they are employed, there are several issues that relate to how supportive the work environment ought to be. Mathew, realising his position says that: I find myself at the disadvantage. I find myself at the disadvantage simply because, when I look at the kind of skill and knowledge I possess at this point in time, take away my disability and I will be given better respect. With my disability and stigma, I don‘t command the equal respect as my peers would. As Joachim and Acorn (2010) explain, non-stigmatised people tend to generalise from particular disabilities to other disabilities and results in the ascriptions of incompetence and the erroneous beliefs of additional disabilities that will make people shout at visually impaired persons for instance or talk to the companion of a person with disability. Miller et al (2009) describe this as the ‗spread effect‘, that is, when a deficit in one aspect of a person‘s life is assumed to cause deficits in other aspects of the person‘s life leading to the person‘s true worth being devalued. A number of people have limited knowledge and understanding about disability and to them, a single disability means gestalt of disability (Goffman, 1963). The gestalt of disability occurs 183 University of Ghana http://ugspace.ug.edu.gh through the spread effect. People on that faulty basis attribute lack of ability to these persons with disabilities. This is where the disadvantages come from. Some people also think that persons with disabilities ought to work in the disability sector because that is where they belong. Though it is decent work for persons with disabilities to work in the disability sector as they seek to empower other persons with disabilities and participate in disability advocacy, it is not always progressive. To Sam who works in the disability sector, he says: I am a person with disability working in the disability sector. One negative part is that sometimes people think that I don‘t have the kind of skills that they have because they can hear and speak, because they can hear and speak, they have more opportunities than me. It‘s in the Ghanaian culture. Once the person sees that you are disabled, they think you cannot do anything, it‘s true. They can hear and they can speak. I don‘t think when it comes to intelligence they can challenge me. Despite having the right credentials, sometimes the disability sector becomes the only option due to the limited opportunities in the mainstream social and economic spaces. Persons with disabilities are left to feel disadvantaged and stigmatised because of the disability which limits the options and opportunities that are open to them. The limitation is stated aptly by Matthew when he says that: In applying for a job with my colleague male who is not visually impaired or has no disability, the employer will presume that that person will be less of a burden than I who has a disability. In all these things it puts you at a comparatively disadvantaged position...even when job is concerned, there are misconceptions that it is a lot more expensive to employ a person with disability. People simply think that it is expensive to employ people with disability meanwhile it is not cheap to employ anybody. Anybody you employ you have to pay. Anybody you employ, you have to give equipment to work…The company sees it as ok to buy the computer for the able-body person to work. But if I am going into that same company and the company probably has to buy the computer and buy an additional software that will make it possible for me to work, the company finds that as a burden. 184 University of Ghana http://ugspace.ug.edu.gh Contextualising Ascriptions of Incompetence to Middle-Class Persons with Disabilities For middle-class persons with disabilities, some of the most difficult experiences of stigma manifest in the ways in which they are assumed to be incompetent and then treated on that basis. The difficulty of the participants, with regards to such experiences, is in the fact that they are given an identity that they consider to be inferior on the basis of their impairments, when in fact they are more than able to perform the tasks that they are thought not to be able to do. The emotional responses such as feelings of anger, pain, and frustrations that persons with disabilities show in response to these treatments of ascriptions of incompetence, social exclusion and oppression constitute internalised oppression, when conceptualised through the psycho-emotional dimension of disability. This internalised oppression also undermines the wellbeing of persons with disabilities because they are made to feel like weaklings, fragile and tainted by their impairments and for which reason they become unattractive and worthless. As earlier explained in Chapter Five, the psycho-emotional dimension of disability emerges out of a social relational process that is influenced by situational and individual factors. The situational factors are the social barriers that restrict the persons with disabilities and the individual factors are the thoughts and feelings that emerge from how they are treated in the respective social spaces. The anger and frustrations that persons with disabilities feel is partly because they are aware that public and social entry would invariably elicit scornful treatments from some of the people they are to interact with. Previous experiences that they have had often become grounds for them to be worried about future social encounters. Martha‘s experience of being 185 University of Ghana http://ugspace.ug.edu.gh questioned on her romantic relationship and pregnancy can be mentioned in this regard. Jacob‘s encounter with young man at the roadside who offered him 50 pesewas is an experience that to him reduces his worth and for which he is unhappy. These add to the non- person treatments that he often experiences with service providers that to him, frustrate his efforts at being involved in mainstream societal activities. He, like other middle-class persons with disabilities, is made to feel different, unaccepted and looked down upon. Akosua was almost prevented from approaching a prominent man in church and also shouted at by a security man at a hospital he had gone to perform her professional duties. These resentful experiences are, to the participants, very denigrating. Gabriel expressed his anxiety at meeting people who may not know his class identity and how they could possibly treat him with abhorrence because of his disability. Jacob‘s experience at the bank gives meaning to Gabriel‘s anxiety when the teller at the bank treats him as if he is incapable of comprehending the requirements of banking services. The truth from these is that there are different service providers whose services may be sought by middle-class persons with disabilities at different times. At every point in time, these middle-class persons with disabilities would have to engage some services providers for the first time and that situation exposes them to several forms of stigma since they are likely not to be known. Quite often, as per the social relational model of disability, the participants are assumed to be incompetent because of the perceived mismatch between their bodies and social expectations. The manner that such ascriptions occur can be very humiliating for some of the middle-class persons with disabilities. For instance, Gabriel‘s encounter with the parliamentarian which occurred publicly was humiliating to Gabriel. Yakubu‘s family‘s admonishment for him to 186 University of Ghana http://ugspace.ug.edu.gh stay away from family gatherings because of the perceived difficulty he has in his movement is something he considers to be exclusionary. That is all because persons with disabilities are not expected in certain social spaces. Situational factors also influence persons with disabilities‘ responses to the stigma. When they are not happy with how they are treated, they either respond overtly or covertly. Sometimes, persons with disabilities simply walk away and at other times, they make their reservations at being denigrated known by being vocal about it. When Sam‘s qualifications were questioned at the place he sought to work, he walked away without engaging the officer who spoke to him. Gabriel also walked away from the parliamentarian after telling him he had not come to beg from him. On the other hand, Ezekiel‘s reaction to his aunt who assumed he needed help was confrontational. Yakubu wrote petitions to the presidency and confronted the sector minister of state who he thought was being discriminatory. On the other hand, Matthew and Jacob continue to endure what they believe to be a partial neglect at their places of work with the lack of support available to them. The situational factors also include the nature of impairment. Both Matthew and Jacob are visually impaired and their responses are different from those of Ezekiel and George who are physically challenged and those of Sam and Martha who are hearing impaired. Matthew appears to respond through his involvement in national level advocacy. Jacob and Martha engage whoever they believe has stigmatised them by offering the person some education. Ezekiel is often confrontational and George and Sam are laid back and are often indifferent. That is not to suggest that the type of impairment one has determines the nature of response that is elicited. Regardless of how persons with disabilities respond to stigma, whether overtly or covertly, they carry a lot of hurt, anger and frustration from being considered to be worthless and incompetent. 187 University of Ghana http://ugspace.ug.edu.gh In dealing with the psycho-emotional dimension of disability, middle-class persons with disabilities are often minded to be alert all the time and they are not able to relax as other people do because they cannot afford to let their guard down and get stigmatised. Some middle-class persons with disabilities are able to challenge the negative disabling identity and the internalised oppression it produces and with that, they reclaim a positive disability identity that is empowering and liberating. This resistance of the internalised oppression is discussed into detail in Chapter Eight of this thesis. Summary These ascriptions as experienced by middle-class persons with disabilities are all founded on the stereotypes about persons with disabilities lacking the ability to act independent of the people around them. These notions are created, reinforced and reproduced by society‘s exclusionary actions that entrench stigma against persons with disabilities in general and the middle-class persons with disabilities who do not even fit the stigmatising categories and labels. While middle-class persons with disabilities continue to challenge the stereotypes about persons with disabilities, they continuously put themselves in the line of fire, as the oppressions of society follow them through the new social spaces that they dare to enter. Phillips (1990) states that, due to the perceived functional limitations that persons with disabilities are tagged with, they are devalued and those who defy these perceptions, being evidence that is contrary to the perceptions of disability, are regarded as the exception rather than the norm. The credit given to such middle-class persons with disabilities because of their individual identities do not extend beyond them, even though the discredit of other persons with disabilities extend to these middle-class persons with disabilities. Their class privileges 188 University of Ghana http://ugspace.ug.edu.gh are sometimes useful in rescuing them from stigmatising treatment but quite often, the overwhelming effects of the stigma have far reaching consequences for the middle-class persons with disabilities in particular, and all persons with disabilities in general. The experiences of the middle-class persons with disabilities can be situated within Ayesha Vernon‘s position when she argues that persons with disabilities‘ experiences of stigmatisation are manifest in the experiences of prejudice and discrimination. The inferior treatment that they receive is all founded on the imaginary imperfections of persons with disabilities which are ultimately used to justify the negative and inferior treatment of stigmatisation (Vernon, 1999). 189 University of Ghana http://ugspace.ug.edu.gh CHAPTER SEVEN CONTRADICTORY POSITIONS OF ACCEPTANCE AND REJECTION Introduction The institutional actions of stigmatisation that middle-class persons with disabilities experience are presented in this chapter. In many ways, middle-class persons with disabilities are not only stigmatised by individuals but also by institutions with which they are associated. Middle-class persons with disabilities interact with people in different institutional spaces because of their social class positions. Some of the institutions they engage are almost exclusive to middle-class people. The middle-class status places them in these spaces where they are exposed to forms of stigma that may not be experienced outside of these institutions. The stigmatising experiences suggest that they are simultaneously accepted and rejected by those same institutions. While it is true that these institutions are set up by society not to deliberately exclude persons with disabilities or stigmatise them, some of the social relations embedded within the institutions and the ways in which the institutions are managed often amount to the exclusion of persons with disabilities and their treatment as non-functional aspects of society. Link and Phelan (2001) refer to this as structural discrimination. It is explained as the situation where the system of rules and behaviours serve to impede disadvantaged people and at the same time offer to project the social benefits of privileged people. Most of these stigmatising experiences of middle-class persons with disabilities in institutions are subtle. That is because stigma, being a potent form of social control, is built into the social structure of these institutions in ways that end up as structural discrimination (Burris, 2006). 190 University of Ghana http://ugspace.ug.edu.gh Structural discrimination as a manifestation of stigma can occur even where person-to-person enactment of stigma may be absent (Link et al, 2004). Persons with disabilities‘ social unacceptability make them unacceptable in these institutions (Pal, 2011). Very often, the institutions appear to be all embracing by giving some opportunities and access to persons with disabilities. Despite this, however, there exists a ―disabling environment‖ (Hahn, 1983 cited by Link & Phelan, 2001) which paralyses an individual‘s ability to fully participate in social activities. The realities of stigmatisation come in to remind middle-class persons with disabilities that they have compromised bodies that reduce their worth as well as their acceptability. This unacceptability is manifest in different aspects of their lives. For this study, the institutional unacceptability as experienced in educational institutions, churches, places of work and the service industry are presented and discussed in this chapter. Educational Institutions In Ghana, about 94% of the estimated 800,000 children with disabilities are not in school (Mensah, 2008). For those in school, one of the ways in which the stigmatisation of persons with disabilities manifests itself is in the options that are made available to them, in terms of courses and subjects that they can choose to offer. Quite often, persons with disabilities in schools do not have the opportunity to choose from the full range of courses available to their non-disabled colleagues. This is especially the case for persons with disabilities who attend special needs schools for visually impaired and hearing impaired persons. Five participants, two visually impaired persons and three hearing impaired persons, attended special schools and shared experiences about how they were constrained in their aspirations by the choices that were made available to them. Sam attended a special school for hearing impaired persons 191 University of Ghana http://ugspace.ug.edu.gh and speaks of the limited choices that were available to him. He tells me that he would have wanted to read General Science when he was in the secondary school but the courses on offer in the school were in General Arts and Vocational Skills such as sewing, textiles and catering. As a result of this limitation, he had to settle for General Arts courses which effectively reoriented his academic and career ambitions. Sam says that, ―…I wanted to become a doctor but the policy there forced me to change. It is the policy that decides where you end up.‖ The hearing impaired persons who had been admitted to the school had been given the opportunity to receive education but they are not allowed to choose from the full range of courses available to non-disabled persons in other schools. The denial is in the fact that persons with disabilities are not allowed to pursue their dreams to their fullest. Essentially, their aspirations are limited by the non-availability of all the courses that are available to non- disabled persons. This happens because the education they receive in the special schools is meant as a response to their disabilities rather than being founded on their total educational needs which are largely ignored. The curriculum of special schools and the alternatives that are available to the students appear to differ from that of mainstream schools, as has been argued by Hehir (2002). The training in the vocational skills is invariably training for low income jobs. That is a subtle way of using education to reinforce the stereotypes and recreate the social exclusion and marginalisation of persons with disabilities. Special schools are seen by some as inferior (Hehir, 2002) but in most cases, such as in Ghana, they remain the only viable options available to persons with disabilities, if they or their families desire them to have formal education. 192 University of Ghana http://ugspace.ug.edu.gh In the long run, persons with disabilities are unable to participate in mainstream social and economic activities as a result of the education they receive as they are skewed away from mainstream social spaces. The educational options become a structural way of making it impossible for persons with disabilities to seek certain career options. Their disabilities become reason enough for people to either doubt their capacity to take up the courses or question their suitability for the career options they seek. The educational institutes become hostile grounds where new forms of stigmatisation based on the usual stereotypes of disability are displayed and to the detriment of persons with disabilities. For Martha who is also hearing impaired, she argues that: There is a lot of education but because of the communication barrier, how can I join such education programmes? The government only gives us a place as professional teachers…why can‘t we be accountants? Why can‘t we be nurses? Why can‘t we be in other professions? It‘s all because of the communication barrier. Institutions find it difficult to pay interpreters, example, in the universities, if a deaf person wants to learn accounting, one interpreter, another person wants to learn psychology, another interpreter, and the institution will say there is no money to pay the interpreters, so the institutions will force them, all of you, do this, to save money…so we need more interpreters…if the institutions use some small money to pay them, they feel they are wasting money. They don‘t get the course they want to do because of communication, so they force them into one particular course…Akropong School for the Blind…not because they like it but because that is the only place they can communicate, they all go there… Martha‘s remark highlights the limited choices of subjects that are available and the usual explanation given for the non-availability of the full range of options. When expenses are being made for non-disabled persons to take the courses, there is no problem because of their superior numbers but when persons with disabilities are involved, the cost becomes a burden because it is assumed that there are not many persons with disabilities within the institutions. The cost becomes a burden because of the stigma of disability, which reduces the 193 University of Ghana http://ugspace.ug.edu.gh instrumentality of persons with disabilities in society. The outcome is the limited range of options for persons with disabilities in schools. Related to the issue of the cost of educating persons with disabilities is the availability of appropriate facilities and adequate support services for persons with disabilities. Most institutional authorities are aware of the challenge that persons with disabilities enrolled in their schools face but sometimes, they are either reluctant to act or unaware of what ought to be done in the interest of the students who have disabilities. The existence of these challenges in schools raises questions about whether schools are even legitimate places for persons with disabilities. Matthew, recounting his experiences in the university said that: I depended on my seeing colleagues to read books on cassette for me to record and when I was given assignments, especially at the University, I had to wait for my colleagues to go do it in the library and then come back with the information from which I had to dub…you have a challenge because you have far limited access to educational material…we are compelled to depend on hand-outs which are even not in accessible format. Another form of institutional denial experienced by middle-class persons with disabilities occurs with the separation of persons with disabilities from non-disabled people in educational institutions. Kitchin (1998) and Lamptey et al (2015) argue that these residential special needs schools, particularly for visually impaired and hearing impaired persons, could potentially perpetuate, entrench and reproduce the exclusion and segregation of persons with disabilities from mainstream society. This position is also supported by Shelton, Alegre and Son (2010) because educating persons with disabilities in special or segregated schools increases the formation of stereotypes which makes the acceptance of persons with disabilities in mainstream social relationships with non-disabled people difficult. These stereotypes 194 University of Ghana http://ugspace.ug.edu.gh emanate from the fact that persons with disabilities are kept away from the reality of their stigmatised identity in ‗protected‘ spaces and by that, they are removed from full social experience which is more than school based relationships (Cooney, Jahoda, Gumley & Knott, 2006). It is true that the special schools for persons with disabilities are set up with some specialised facilities and professional personnel as a way of meeting the specific education needs of persons with disabilities. Ghana has 10 residential primary and junior high schools for hearing impaired person and two residential primary and junior high schools for the visually impaired (Mensah, 2008). In recent years, however, a number of private schools that educate persons with intellectual and learning disabilities have also been established by private individuals, religious bodies and NGOs. The graduates of these special schools, however, are effectively separated from non-disabled people in society. The special schools more or less accentuate the stigma that persons with disabilities experience. Jacob says that ―…I started with school for the blind so most of my friends became visually impaired persons.‖ What this means is that he has received formal education but his education has further removed him from full social participation as a means of emphasising how different he is from people with his condition. As he further states: When it happens like that, you always have your mates being visually impaired persons or persons with disabilities. So when you need help, the visually impaired person, he is not getting a job so…but for now it‘s like we‘ve been isolated. We are a kind of people. It‘s like they are a kind of people. The other society sees us as a different kind of people. So there is something like a barrier. If there is inclusive education, we will all see ourselves as one people. 195 University of Ghana http://ugspace.ug.edu.gh The benefits of social capital that is built through the networks and influence of schoolmates almost certainly become alien to persons with disabilities who attend special schools through no fault of theirs but because of how their education set-up is arranged. This is in line with the position of Schur, Shields and Schriner (2003) that disability is often accompanied by decreased social capital which can also lead to diminished civic and social skills as well as limited political participation. The limited opportunities for social engagement inhibit the ability of persons with disabilities to breakout and join mainstream social activities. Some persons with disabilities attend inclusive schools which offer formal education to both persons with disabilities and non-disabled persons. Seven participants (Jeanette, Gabriel, Ezekiel, Daniel, Akosua, Kofi, Agnes), who like the visually impaired and hearing impaired participants, also acquired their impairments in their childhood attended inclusive schools. They attended inclusive schools largely because of the nature of their impairments. The mere fact that both persons with disabilities and non-disabled students study together does not necessarily mean that all social barriers against disability are collapsed. In fact, it is under such circumstance that some of the vilest stigmatising experiences occur, particularly with how some of the non-disabled people act towards the persons with disabilities. Matthew, who is visually impaired, recounts his experience in the secondary school he attended. It was an inclusive school and according to him: It was horrible at the beginning because we had several issues of psychological discrimination where as a visually impaired person, you go to sit at a table and all the other seeing guys seated at the table will rise and leave the table for you and all. That was not easy. You have your juniors questioning your authority as a senior person and you have your colleague senior questioning your authority to discipline in any way or another junior. 196 University of Ghana http://ugspace.ug.edu.gh Experiences such as Matthew‘s, remind persons with disabilities that they may have been accepted by the institutions as students but a critical part of the institutions still consider them to be alien to the institution. In a way, persons with disabilities are told indirectly that the spaces they find themselves in are not exactly where they should be. In some other situations, particularly when it comes to the participation of persons with disabilities in group activities, the condition and needs of persons with disabilities tend to be ignored. The consideration of persons with disabilities as a minority group effectively means that their presence or absence from group activity does not affect the overall purpose of the gathering. Akosua realised this when the Ghana alumni group of a university she attended in the UK invited her to a socialising event. Apparently, almost all their socialising gatherings involve mountain hiking. She received one more invitation to the hiking expedition and according to her: I just sent them an email and I said is that all you know? Please when you went to Leeds didn‘t you see people with handicaps having fun? They had to write to apologise. Then I said well, I have made my position already. I will not join you for anything because you have not learnt anything from Leeds. Everyday let‘s climb the Aburi mountain, let‘s go jogging. Oh no. What would I get from following you? No I don‘t do such things. Akosua had difficulties in participating in the mountain hiking but the group did not realise it until she drew their attention to it. She was not a stranger to the group. They knew her and were very much aware of her disability but it did not feature in their decision making regarding the nature of socialising activities to enable Akosua participate fully in them. Akosua was a part of the group in principle, but not in deed because the group‘s activities had been constructed to exclude her. 197 University of Ghana http://ugspace.ug.edu.gh Gabriel also experienced another form of institutional stigmatisation when he applied to study a health science based course after secondary school. The course was to be taken at a teaching hospital in Ghana. He was invited for an interview and when he arrived at the venue and introduced himself as one of the interviewees, the receptionist at the institution wondered whether he had been invited to come, judging from the fact that Gabriel is an amputee. He wondered and told Gabriel to hold on for him to check from his superiors whether indeed, a person with disability had been invited for the interview. Gabriel refused to stay further for the interview process. He said: When I was growing up I was dreaming of becoming a medical doctor. So when I went to (name of hospital) and that thing happened, I forgot about the sciences totally and now went to applied science and ended up in the business environment. The disability has taken me completely away from the sciences and when I sit down sometimes I feel it… Abidi and Sharma (2014) argue that persons with disabilities are able to access education only when educational institutions are accessible. Accessibility exists at different levels, stretching from the convenience of the built environment, availability of support systems through institutional administration and appropriate infrastructure, social organisation and the interactional arrangements of the educational institutions. The limitations sometimes occur as a result of the schools‘ lack of resources or possibly their unpreparedness to expand the range of options that can be accessed by persons with disabilities. This is in line with what Athanasou (2014) posits that educational achievements of persons with disabilities are restricted in schools and constrained by their disabilities (Sevak et al, 2015). Some of the persons with disabilities who quit school do so because of the distance they have to commute 198 University of Ghana http://ugspace.ug.edu.gh from their homes to their schools and for some, it is the hostile environment created by some of their teachers and colleagues that make them quit school (Mensah, 2008). Some institutions give indications of their readiness to identify needs of persons with disabilities and provide adequate support for them. Some of the institutions, however, do nothing beyond gathering the information. Gabriel applied to study at a university in Ghana and indicated on his application form that he was an amputee. However, according to Gabriel, when he came, his first lecture was on the third floor of a five-storey building that was without a functional elevator. The class was moved to the ground floor only after the lecturer who was aged had complained about his own difficulties in climbing the stairs. Kasiram and Subrayen (2013) found a similar occurrence in their study of institutions that admit persons with disabilities as students but fail to provide the suitable conditions for them to thrive. They describe it as amounting to sideling persons with disabilities in institutions of higher learning. This was a clear indication that the university did not consider the entry he had made on his application form in the allocation of a class for that subject. This situation is, however, not peculiar to Ghana. Naami (2011) in recounting her experiences when she travelled to the United States for her graduate degree indicated to the school that she needed an ―accessible‖ accommodation but when she got there, the facility she was given was inaccessible. It remains a wonder as to why the university would ask for persons to indicate their disabilities on their application forms but still fail to make adequate provisions for them. Educational institutions are an avenue for the manifestation of stigma against middle-class persons with disabilities and this is because of a number of factors. In some situations, disability is seen as the personal problems for which the individual has to adjust. Failure to 199 University of Ghana http://ugspace.ug.edu.gh adjust, therefore, brings hardship unto the individual. It is for this reason that one of Gabriel‘s colleagues once made an offensive remark about him because he came into a lecture late. Similarly, Matthew colleagues shunned him because he had a compromised body and Kofi‘s colleagues who used to play with him would ask him to leave their company sometimes when they wanted to engage in some other recreational activities. These scenarios point to an entrenched obliviousness about disability that exist in educational institutions. The challenges that persons with disabilities face in the limited choices available, inadequate support, inaccessible infrastructure and weak social capital as a result of segregated education are more profound for middle-class persons with disabilities who acquire their impairments in their childhood. Once the challenges which mostly occur during basic and secondary education define your path as a person with disability, it becomes almost impossible to reroute your academic or career path, as was found out from the 12 participants who acquired their impairments as children. However, when 10 out of these 12 participants made it beyond secondary education, they had a wider range of courses and career options to choose from as they pursued higher education. The two who have not pursued higher education have chosen their career paths and it is apparent that their choices were not constrained by their disabilities. For the participants who acquired their impairments as adults, their career choices had already been made and their impairments did not really affect their academic pursuit. Maame and James were not affected at all. Yakubu had to put off his desire for doctoral studies as he recovered from the accident that made him acquire his disability. George deferred his pursuit of a graduate for a while but has since completed his Master‘s degree. 200 University of Ghana http://ugspace.ug.edu.gh Places of Work Another manifestation of institutional acceptance and partial denials occur at places of work. Getting employed can sometimes be a challenge, especially for persons whose disabilities occur prior to seeking employment in particular institutions. Nine participants shared various experiences at their places of work and places they tried unsuccessfully to secure employment. Employers are often in doubt about the capabilities of persons with disabilities and are also bothered by what may be seen as additional cost of hiring persons with disabilities. Six out of these nine participants shared experiences about how they were treated by their prospective employers. Some colleagues of middle-class persons with disability also question the instrumentality and capabilities of persons with disability. Three participants out of the eight had experiences about how their colleagues treat them at work. Jacob expresses his frustrations about this when he says that: The most challenging aspect is that after we have been able to go through the educational ladder with our seeing colleagues or other friends who are not persons with disabilities…struggling…people reading to us because we didn‘t have those documents in braille those days. After you are out people still think that you cannot work and so you find it difficult getting employment. Meanwhile you went to school with the same persons and they even had better facilities, and you‘ve been able to complete with all of them, sometimes in the same class, sometimes even a better class and yet when it comes to the field of work people will prefer those without disability to those with disability. Some employers would, however, employ persons with disabilities but would only allow them to perform minimal tasks, because of the uncertainties about hiring persons with disabilities as full time personnel or having to assign complex tasks to them. The irony in that is that the services of these persons with disabilities may be needed but the employers do not want to risk much by employing them. Akosua is an award-winning journalist with several 201 University of Ghana http://ugspace.ug.edu.gh years of experience and at the time of the conduct of the interview for this research, she had been asked by the owner of a media house to help him set up a new media unit. She notes: I honestly would have even loved to move here to work for them like (name of media house) but the owner also thinks that it will be difficult for me. He has his own doubt. He has told me personally that I believe this work will be too difficult. Akosua‘s employer only wants to engage her in the short-term because he believes that her job schedule in the early stages of the organisation would not be so difficult and will be comfortable enough for Akosua. Her employer is very much aware of her competence but has reservations on entrusting her with a fulltime position in the long term because of her disability. This is consistent with the argument made by Kulkarni and Lengnick-Hall (2014) in their review paper to the effect that some employers are prejudiced and are thus reluctant about hiring persons with disabilities. In some situations also, some persons with disabilities risk losing their jobs because their disabilities are construed by their employers as making them unsuitable for the jobs as the employers may be unwilling to make changes that will help accommodate the employee who acquired the disability after being employed (Foster & Wass, 2012). As difficult as it may be, a number of persons with disabilities are gainfully employed and earn commensurate incomes when compared with their non-disabled colleagues. Some, however, do not always earn incomes that match the income levels of their non-disabled colleagues. Middle-class persons with disabilities who believe they are not given the fitting remuneration that they ought to be given attribute it to an unmentioned and yet clear statement of a disregard for their services, contributions to work and their needs, all because they have disabilities. Jacob says that: 202 University of Ghana http://ugspace.ug.edu.gh My finances are not strong and then, I don‘t know…but I think sometimes they feel a visually impaired person, what are you going to use your money for? They think you don‘t have responsibilities. So I think that‘s one thing…I remember about 5 months ago, one of my bosses told the HR to at least increases or add something to what I had because I needed a loan for something. He told the HR in my presence but as at now nothing has taken place… To Jacob, the administrators at his place of work do not place a lot of premium on what he does or what he is worth, and the reason for that is because he is visually impaired. He admits that his organisation seems to be going through some administrative and financial challenges but he does not think these should be enough to justify why the officer in charge is yet to comply with the directive to increase his salary, months after being told do so by some superior officers. Jacob believes that perhaps, some of the managers of his organisation think they have done him enough favour by keeping him there and giving him a salary for his subsistence. In other situations, however, middle-class persons with disabilities are made to realise just how undesirable they may be, with institutions finding it difficult in providing the adequate support systems for them to work at ease. Sam did his National Service with an NGO and he says he was sure the managers of the organisation wanted him to stay on after his National Service. Sam said stated that: I didn‘t have an interpreter and other supportive devices that I use to work. So they were trying to give me anything to do but I realised that it wasn‘t my capability, because I was skilful elsewhere and what they wanted me to do wasn‘t what I wanted to do and also, I didn‘t have a sign language interpreter to ease my communication so I thought it wise that if there was an opportunity here, I move to this place because here, I can get communication opportunities. They were interested in keeping me there but they were not interested in providing the facilities that would allow me to work. So I explained to them that that was why I was leaving. 203 University of Ghana http://ugspace.ug.edu.gh According to Sam, the organisation was willing to offer him a position but not necessarily with the appropriate support he needed to work. In so many ways, the offer may even be seen as some form of patronage, with the organisation‘s intent of offering him a place not because he is qualified but as an attempt to help him. Sam‘s rejection and communication of his reason to them was a way of protesting the institutional denial. The NGO was not really interested in Sam‘s full capacity but still wanted to keep him, in what could be explained as an offer to give him what others may not be willing to give him, that is, a salaried position. According to Riach & Loretto (2009), it is not unsurprising for some employers to offer low skilled jobs to persons with disabilities based upon persons with disabilities‘ identities as ‗disabled‘ people and not because of their qualifications, experience or skills set. Sam appeared to have fallen into such as situation. His decision to leave the NGO is parallel to the situation of employees who leave their posts because adaptations are not made for them to be able to perform their tasks and also because of employers‘ reluctance to accommodate their needs, a situation that renders the middle-class persons with disabilities restricted on their job (Fevre, Robinson, Lewis & Jones, 2013; Foster & Wass, 2012; Hogan, 1998). Hogan (1998) goes on to describe this situation and the challenges it presents as a ‗punishment‘ for persons with disabilities for their possession of compromised bodies. For Akosua who works as a journalist, her disability has made her miss a number of opportunities in her line of work. She believes the reason why she has never been sent on a foreign assignment by her media organisation is because she is physically challenged. Certainly, no one has told her in the face that her disability is the reason but when her qualifications and competence match that of her colleagues evenly and the only point of difference remains her disability, it becomes almost impossible not to see her disability as the 204 University of Ghana http://ugspace.ug.edu.gh plausible reason why she has never been sent on any foreign assignment, which is considered prestigious and a sign of career advancement. Akosua says that: I think that, though they might have not told me but sometimes there are certain assignments that they thought (Akosua) should do it but she can‘t do it because of her disability. I‘ve never gone on scheduled foreign assignments which of course they think it will be a lot of hard work. You have to rub shoulders with the international journalist here and there. That is the only point I can say they have discriminated against me. And then when it comes to promotion… because I had my former Director General telling me that, that position is a difficult one. Do you think you can you do it? People will worry you oh… Disability, therefore, occasions a certain lack of opportunity for middle-class persons with disabilities. Persons with disabilities may be fully employed but when it comes to the conferment of leadership and promotion to personnel, or an active role in decision-making, persons with disabilities are sometimes overlooked and that is consistent with findings from several studies (Barnes & Mercer, 2005; Erickson et al, 2014; Fevre et al, 2013; Kitchin, 1998; Schur, Kruse, Blasi, & Blanck, 2009). Akosua does not have the experience of covering a foreign assignment and Sam was to be given a position below his competence. These situations effectively limit the exposure and professional experience one may gather. For one to be promoted at the work place, all these may be factored into consideration but persons with disabilities are often constrained along those lines. Invariably, they are overlooked for leadership at the work place. Jacob expresses similar sentiments about leadership and promotion when he says that: I think that in my workplace for example if I am not visually impaired I think that I would have moved forward in terms of leadership in promotion wise, at least to be given a certain position to work, because I am among the oldest employees there. Many of them there are new… I will say that I am not in a leadership role so I wouldn‘t say the decision they take that affects the station 205 University of Ghana http://ugspace.ug.edu.gh I‘m part of it. I‘m not part of it...and perhaps, I‘m not in leadership because of my disability, so there is an indirect relationship. It is known that some employers have specious assumptions about the productivity and social skills of persons with disabilities (Lengnick-Hall, Gaunt & Kulkarni, 2008). Reynolds (2010) and Erickson et al (2014) also identify a lack of openness and a seeming unwillingness on the part of employers to employ persons with disabilities because of the negative stereotypes about disability. Athanasou (2014) affirms this with findings from his study that show that persons with disabilities have reduced opportunities for employment. In like manner, Sevak et al (2015) and Maritz & Laferriere (2016) also posit that persons with disabilities have significantly reduced participation in the labour market when compared with non-disabled people. From all indications, it does appear that the situation of persons with disabilities experiencing social rejection as a result of the stigma that their disability carries does not come about because persons with disabilities chose to be engaged in the labour force but rather that there are severe sanctions that inhibit their desire to get employed, earn income and maintain descent living standards. These inhibitions are created and maintained by normative and erroneous beliefs that are sustained by the usual imagery of weakness that disability is represented with. In the end, middle-class persons with disabilities are defined by their disabilities first, before the addition of other social identities (Mik-Meyer, 2016b). Persons with disabilities are ‗disabled‘ by idealist constructions of what the perfect worker ought to be like and the type of body that such a worker should possess (Foster, 2017; Foster & Wass, 2012). Jammaers et al (2016) argue further that the idealist notions of a perfect worker reinforce these negative stereotypes about persons with disabilities. They add further that this creates a contradictory position that makes persons with disabilities useful in one 206 University of Ghana http://ugspace.ug.edu.gh breathe, and emphasises what they are unable to do in another. In situations where persons with disabilities are employed, it is not uncommon to find that they lack the provision for training and support systems that will help them give of their optimum best. For middle-class persons with disabilities, other subtle forms of stigmatisation that they experience is the lack of commensurate recognition of their intellectual and instrumental contributions, a limited appreciation of their services and a narrow sense of worth for their personalities. According to Fevre et al (2013), sometimes, colleagues of persons with disabilities at their places of work fail to provide the requite support needed to support the activities of persons with disabilities. This situation also makes it difficult for persons with disabilities to work at their optimal capacities, a situation which ends up reinforcing stereotypes about persons with disabilities‘ weaknesses and unproductivity. For Fevre et al (2013), this amounts to failure and unwillingness on the part of these co-workers of the persons with disabilities to fully integrate them into the social structure of organisations. Middle-class persons with disabilities see this as an outcome of the beliefs about their perceived weakness, as people fail to recognise what they are really able to do. Matthew works in an educational institution and is in charge of the unit that supports the technological needs of visually impaired students. In responding to the question of how his colleagues relate to him at his place of work, Matthew says that: One funny thing is I don‘t think that some of my colleagues in the department I find myself [in] kind of adequately comprehend the essence of our unit which is assistive technology. I am in my third year now and I have still not had an office set up adequately for me. Matthew believes that the fact that he has not been given the proper workspace and adequate support systems attests to how some people in his work place consider him, what he does as 207 University of Ghana http://ugspace.ug.edu.gh well as the students he is supposed to assist. To Mathew, perhaps, if the people in his unit had a better appreciation and understanding of the purpose for which the unit was set-up or considered him or the students he works with much regard, then it would be important to them that he gets the proper support in order for him to work but all that is missing. Instead, he is accommodated in an open unit with a desk assigned to him. Matthew goes on to say that: There are people who my perception is that they will take me with a pinch of salt. So even at the workplace, it‘s not everybody that I relate to easily because it‘s not everybody that I know that understands and who even gives equal importance to the work that I do for the University. The lack of appreciation for the work of persons with disabilities also stems from the fact that some colleagues of theirs consider them to be a burden on them and the institution. To such colleagues, the presence of persons with disabilities in an organisation requires of the colleagues of these persons with disabilities to do more than they would have done, had such persons not been around them. The nuisance factor that accompanies these persons with disabilities comes to the fact that some of their colleagues do not fully appreciate why they ought to be where they are. Gabriel recalls an instance when he encountered this situation. He told me that: There was an instance where I needed to come here to do something and I had to get my machine to this place. So I had to call on one of them the people to bring it but she was not bringing it so I asked her, she also happens to be a junior staff over here so and she said you too you worry [me] too much. For Gabriel, the comment made by his junior colleague was an expression of her frustrations from working with a person with disability and having to assist him with some extra duties, duties which a non-disabled colleague would hardly ever ask of her. As it was in the case of Matthew, Gabriel‘s experience with his colleague serves to remind persons with disabilities 208 University of Ghana http://ugspace.ug.edu.gh that they are accepted only in so far as they do not become a burden to any other colleague of theirs. In other ways, this could be interpreted to be unwillingness on the part of the non- disabled colleagues of persons with disabilities to support the work of persons with disabilities. This raises several questions as to why this may be the case, particularly so when Martha‘s experience, also with non-disabled colleagues, shows: At my place of work, when I started, I was a sub-teaching assistant and I progressed, promoted to teaching assistant, and later promoted to class teacher. When I was given that position, another hearing person was my assistant but they were not happy that they were under me, that I was the class teacher so they made my work difficult. When I arranged work papers, they will not give it to the children. The headmaster called me that all my data that I have kept on the computer have been changed so now I‘m no more working with hearing people. I‘m only working with deaf people as a group because my boss, he knows deaf persons very well. According to Martha, some of her non-disabled colleagues could not accept being in a subordinate position to a person with disability. The irony in this is that Martha teaches in a special needs school and it is the teachers of such schools who are expected to be on the frontline in advocating for the acceptance of persons with disabilities into mainstream social activities. The afore-mentioned experiences point to what McLaughlin et al (2004) refer to as ‗discriminatory employment judgments‘. This occurs with how co-workers evaluate the worth and contributions of persons with disabilities. In so many ways, discriminatory employment judgments affect decisions bordering on whether persons with disabilities will be hired, retained or promoted within an institution. The effect of this judgement is even greater when it comes from senior figures under whom persons with disabilities work. When discriminatory employment judgments are made by colleagues at the same level, it influences how persons with disabilities are treated at the place of work (McLaughlin et al, 2004). For James and 209 University of Ghana http://ugspace.ug.edu.gh Yakubu, who acquired their impairments as adults, their colleagues at their places of work deemed it necessary to marginalise them under the guise of patronage and sympathetic treatment as it was in the case of James, and condescension in the case of Yakubu. When the participants‘ impairments are taken into consideration, the eight participants who did not report of any stigma from their places of work are not so different from the eight who indicated that they have been stigmatised in various ways at their places of work. What makes the two groups of participants different, however, is the location where they find themselves and the kind of people they interact with in those spaces. In the case of those who are not stigmatised at their places of work, there could be a lot of ―wise‖ people around them, as Goffman (1963) puts it and that is why they are not stigmatised. In the case of those who are stigmatised, it is possible that such ―wise‖ people around them are few. What this means is that, if these two groups of participants trade places, they are likely also to trade their experiences. Stigma at the place of work, therefore, depends on the location of middle-class persons with disability and the kind of people they interact with, not the type of disability or when the impairment was acquired. Churches Churches happen to be another avenue where middle-class persons with disabilities are stigmatised. Of course, there is a spiritual aetiology of disability that fuels aspects of the stigma that persons with disabilities experience. One wonders how influential that is in how persons with disabilities are treated in churches. Fifteen out of the 16 participants indicated that they were Christians and one was a Muslim. Five of Christian participants indicated that 210 University of Ghana http://ugspace.ug.edu.gh they were satisfied with their level of involvement in activities in church and did not fell stigmatised or marginalised. Of the five, Daniel and Agnes, occupy positions in church. Tony and Martha have sign language interpreters who translate proceedings to them and Maame receives regular home visits from the clergy and leadership of her church. Three other participants gave an indication that they are not too involved or active in church activities but they did not put it down to their impairment as the reason for their aloofness in church. Six participants (Jacob, Akosua, Ezekiel, Sam, James, Matthew) mentioned actual experiences they have had within and around their respective churches. One participant, Jeanette, felt she had to keep a safe distance from certain activities in order not to draw ‗unnecessary‘ attention to herself. She is not sure of the reception that she will receive and that is why she declines to participate in certain activities. Martha, who is comfortable in her own church, shared an experienced she once had in a church she had gone to visit. The issue of spiritual aetiology of disabilities came up when the leader of prayer session invited her for ‗Deliverance‘. She says that …my husband heard that some church…people were doing a revival…they were doing miracles. He invited me to go just for prayers but not because of my [hearing impairment] but when we went there, the pastor asked me a questioned and I said I‘m hearing impaired and the pastor was like you there, the devil, come! Your mother and your sister have blocked your mouth, a lot of things…then I said no, no. Then he said you wait here…and I told him I‘m sorry, I have my own church…I can‘t waste time waiting for you so I‘m going. If God himself wants me to hear, why not wait for him? I‘m just a perfect human being. The interpretation of disability as a manifestation of a spiritual activity is what informed the pastor‘s treatment of Martha (Bayat, 2015; Slikker, 2009). Certainly, even though she went 211 University of Ghana http://ugspace.ug.edu.gh there just to pray, she was confronted with the reality of her impairment being conceptualised as a ‗devilish‘ trait which had to be ‗cleansed‘ through ‗deliverance‘. Ezekiel saw what he believed to be a conscious attempt to exclude him from certain revered duties of the church. He saw that his friends were called upon to perform certain tasks but as he put it: The church wouldn‘t give you a role to play and involve you in activities like reading the bible and other things. You wouldn‘t get the chance to do those things until you take the initiative or you ask your friend that when they ask you to read the bible, let me read instead. I had that kind of drive to do and that was keeping me going… Ezekiel saw what he believed was a subtle attempt by his church to overlook him even though he had been accepted as a member of the church. What this means is that though you can be a member of the church as an institution, you may not be allowed to do everything non-disabled people are allowed to do. This is similar to a situation of partial acceptance and partial rejection. For Jacob, his partial rejection in the church occurs because he is seen as a possible nuisance to the non-disabled members of the church. He told me that though he usually goes to church with a relative, he once did so without any family members. He told me what happened when he got to the precincts of the church: I called the ushers and I asked the person to make me sit somewhere, so the person held my hands…then I went with this usher and she put me just at the back of the church. And there were lot of empty spaces in front of us so I asked her that look take me a bit forward so that it wouldn‘t be like I have been isolated because many people had not come to church yet, so me alone sitting one bench…at the back was not good. She said no I should sit there because when people are getting up I will worry them… 212 University of Ghana http://ugspace.ug.edu.gh The usher was ready to admit Jacob and offer him a seat but she also sought to remind Jacob that his visual impairment meant that he would be an obstruction to the non-disabled members of the church. For Jacob, the refusal of the usher to offer him a seat in front was a testament of what the usher thinks of persons with disabilities, that they are an obstruction to non-disabled people and should be as invisible as possible. This is despite the fact that Jacob has been a long-time member of the church. If ushers who are supposed to be frontline officers of the church act in such a manner towards Jacob, then the question may be asked that how many other persons with disabilities would have been treated in that manner? The church‘s partial acceptance is also seen in the experiences of Sam and his wife. Both of them are hearing impaired and have been members of their church for some time. The minister and the administration of the church know about them and the fact that there are other hearing impaired people in the church. However, Sam says: I remember some time ago, we had an interpreter when I was baptising my daughter. That was the last time I had an interpreter. Always, when I go to church, there is no interpreter. The church doesn‘t have any interpreter. In the deaf school, the Church has an interpreter but outside the church, no interpreter. It means the pastor‘s sermon and the songs do not benefit me…my wife too, she doesn‘t benefit…we just go and sit, we close and we go home. We meet friends, we smile, we greet them, and then we go home, that‘s all we do…some time ago, in 2009, I wrote a notice about that issue. I told the church to provide interpreters for the deaf people in the church. Up to date, I have not heard anything about that. The church has put the letter somewhere. Maybe the deaf people in the church don‘t show themselves but they are there in the church. They don‘t benefit. Now they have all left because there are no sign language interpreters. It is not very clear why the church does not have interpreters for the hearing impaired members of the congregation, though they are aware that some of their members are hearing impaired. It is very clear, however, that the church appears not to prioritise the needs of the 213 University of Ghana http://ugspace.ug.edu.gh hearing impaired members of the congregation. For Sam and wife, church becomes a regular occasion to interact with friends as a social event. The other spiritual and cathartic benefits of being part of the service are not always available to them. The church acknowledges their membership of the church. That is why the church provided an interpreter for Sam‘s daughter‘s baptism, since that ceremony was about Sam and his wife but they are excluded from subsequent activities of the church, as a reminder of how different they are. Akosua is very active in her church and tells me of how she had to struggle to get one of the senior pastors of her church to agree for changes to be made to their new church building which was under construction. The changes Akosua sought were in respect of the creation of access ramps to facilitate access for wheelchair users and other persons with disabilities who may need specialised access routes. The pastor had objected to Akosua‘s suggestions that the building was not accessible. Akosua says that: Look at the mansions they are putting up as cathedrals. When I say it, they laugh. It is just a façade. At the entrance, you see a ramp. You manage to get in and then the floor is not levelled. It is partitioned. As for the platform it is a no, no for you. It means that you can‘t be a leader. They have limited you. So the question is so even Jesus or God doesn‘t take handicapped people? When I say it they say eeigh. We were putting up our structure. I fought my pastor so long. He didn‘t understand until a friend came from the UK. In conversation and I was asking him yes…I‘m telling my pastor that we need a ramp here. He doesn‘t seem to understand. We spoke ahhh and they did something there, pretence, a sham. It is not very clear why the pastor objected to the changes initially but that shows a certain unwillingness to open up completely to the needs of persons with disabilities and also shows how they are not expected to be in certain spaces. The platforms Akosua spoke about are usually elevated and are mostly accessible only by a staircase. The leaders and senior officers of the church usually sit on the platform. Usually, they have no ramps for the platforms even 214 University of Ghana http://ugspace.ug.edu.gh though the main church halls have access ramps. Invariably, what this means is that in the seemingly unlikely event that a wheelchair user is made an officer of the church, he or she may be unable to access the platform, or better still, wheelchair users are almost certainly excluded from occupying leadership positions in such places. Akosua‘s complaints resonate with James‘ position that he hardly goes to church after he acquired his impairment. He says: I can‘t go to church now because of the stairs and when people are going for collection you will be sitting down so either you stay outside the church premises or…that is another challenge I am facing currently but so I will try and adjust…maybe I will sit in front or at the back, where I may not disturb other people. Having being in the church for a while, James realises the difficulties that lie ahead of him when he considers the accessibility of the church building. He states that he ―will try and adjust‖, when in principle, it is the church that has to make adjustments to accommodate him and all other persons with disabilities. The Service Industry The conduct of some service providers also stigmatise middle-class persons with disabilities, particularly those who by their virtue of their social class, try to aspire to statuses not usually associated with persons with disabilities. Nine participants shared stigmatising experiences that they have had with various service providers they had encountered. These experiences range from denial of services through contemptuous treatments to the passing of unsavoury comments by these service providers. Agnes was confronted with this in the harshest possible way when she went to the hospital to seek care when she was pregnant with her first child. She told me about her encounter with the doctor. Agnes, in recounting that experience said 215 University of Ghana http://ugspace.ug.edu.gh that, ―I remember when I was pregnant with my first born…there was this doctor at the (name) hospital. When I got there, the woman said go away, go away, as for you, I won‘t accept you here. I won‘t care for you here.‖ Agnes is kyphotic and she told me about how the doctor screamed at her. Obviously, her disability presented a challenge unlike the pregnancies of non-disabled women. Somehow, to that doctor, that made her ineligible for care. Agnes‘ experience is consistent with Melville (2005) when he cites the medical profession as one of the agents of stigmatisation and discrimination. Melville states that this occurs because of the lack of appropriate knowledge and skills due to a dearth in specialised education and training. Some doctors, he adds, admit that they feel deskilled when they are working with persons with disabilities (Melville, 2005). The constraints of caring for women with disabilities are apparent and the lack of appropriate equipment and only increase the difficulty. Sometimes, however, the patronising conduct of some of the health workers becomes stigmatising. They show through their behaviour and attitude that their expectations from persons with disabilities are low. They make condescending comments that make it seem that females who have disabilities have some exceptional abilities to be able to conceive and carry a pregnancy to term, even though that is not an exceptional ability of an adult female. Ezekiel‘s wife who is also physically challenged went to the hospital when she was pregnant and faced difficulties with some of the procedures such as checking of her weight and height, procedures that required that the she had to be upright. The comments made by some of the nurses and their attitude almost certainly suggest that there would not have been any problem if she had not become pregnant. They would not say it openly because of how offensive it will 216 University of Ghana http://ugspace.ug.edu.gh be but subtly, they remind you that you have gone overboard by getting pregnant as persons with disabilities. The experiences of Agnes and Ezekiel‘s wife are similar to observations made in Ghana by Adjei-Amoako (2016) and they are no different from treatments that occur in health care delivery and medical care in parts of the developed world (Thompson Sanders et al, 2004) Motherhood is often considered to be something females who have disabilities are proscribed to seek. Some service providers show through their behaviour that they have conservative views about the abilities of persons with disabilities. They do this despite the existence of a legal regime that is supposed to encourage and promote more progressive views of persons with disabilities. Tony used to own a vehicle and knows how to drive. He told me that when he went to the offices of the Driver and Vehicle Licensing Authority (DVLA) to obtain a driver‘s licence, he was told that he could not be given the license because he was hearing impaired. When he prompted them that the Disability Act permitted him to do so, the officials at that DVLA office told him they would confer with their superiors and get back to him. He has been waiting for some time but they are yet to get in touch with him. He has been unable to acquire a driver‘s license despite the fact that Section 27 of the Persons With Disability Act, 2006 (Act 715) reads ―A person with hearing disability may own a driving license upon passing a driving test and satisfying conditions prescribed by the Driver and Vehicle Licensing Authority.‖ What is obvious is that the officers at the DVLA are either not aware of the provisions of the Disability Act or even if they are, they are not willing to put it to use because they still consider Tony, a hearing impaired person as someone who is not capable of driving safely. The breaching of the Disability Act to Tony‘s disadvantage is an institutional act of stigmatisation and discrimination that should not occur but it happens. Tony should 217 University of Ghana http://ugspace.ug.edu.gh have been given the opportunity to go for a test or undergo any other procedure that would enable the officers to examine his competence as a driver but that does not happen. This raises the possibility that several institutions including state agencies and actors deny persons with disabilities the right to certain privileges unjustly and illegally. The Disability Act is meant to ensure the acceptance of persons with disabilities but the failure and perhaps unwillingness on the part of service providers to enforce the regulations is a mark of exclusion and rejection. Ezekiel also speaks about how some of the banks he visits are set up to exclude persons with disabilities. The facilities in some of these banking halls are set up for non-disabled persons, as if to say persons with disabilities are not expected to seek the services of those organisations. By so doing, such institutions unconsciously remind middle-class persons with disabilities that the banks and other institutions are not exactly places they are expected to be seen or served. Ezekiel says that: When you go to every counter, the counter is high above us. They don‘t have a place that is at our level while we are in the wheelchair. They want us to hang and sign our documents. They don‘t make provisions for us, say a different section for us. Some of the banks don‘t have it. You just go to a few banks and find out for yourself. You will see that their counters are all high. Those in the wheelchair would have to turn their necks. The people who are to serve you at the counter are seated and the counter is above them. Whenever I get there, I tell them, please, you would have to get up to attend to me. I will let you stand on your feet to serve me, because I won‘t see you if you sit. Non-disabled people will be on their feet so they can see you when you are seated but I can‘t. Other patrons of the bank do not have to draw attention to themselves and their bodies in the way Ezekiel is forced to do. Although Ezekiel‘s protests give him what he seeks, in the long term, hardly any changes would occur because the institutions may consider the fact that not many people of his kind would visit them anyway. At the least, some institutions provide 218 University of Ghana http://ugspace.ug.edu.gh ramps to facilitate entry but once inside, persons with disabilities are confronted with the realities of their non-acceptance and their exclusion once again. Invariably, there is acceptance through the provision of ramps but there is exclusion with the lack of low counters. For a number of these institutions, the cost involved in the redesign of facilities is something they would gladly avoid, if they have to. The frustrations that the limitations to access pose are expressed in the words of Gabriel when he complains about the fact that a new edifice built by the university he attended did not have adequate access routes for persons with disabilities. Gabriel was one of several students who were required to use the facility for academic and administrative purposes when he was in school. He says: They are not accessible and the university went to put up a modern structure. There is no ramp. Sometimes, when you look at these things you say ah! So who thinks about you? Who really cares about you? If you go against all these things to acquire a certificate and still people want to undermine that certificate, it is very annoying. Some forms of restrictions prevent persons with disabilities from establishing and developing some forms of relationships that would otherwise empower them. That affects the comfort of persons with disabilities and also the nature of their social relationships that are founded on access to particular spaces (Loja et al, 2013). Sometimes, this occurs even when the access routes exist. This is when persons with disabilities are directly or indirectly prevented from using the designated access routes. Instead, some people rather choose to offer some form of assistance that reduces the person with disability to an object, with the offer to carry persons with disabilities over the places where access may be needed. Such was the experience of Maame when she visited the seat of Ghana‘s presidency. According to her: 219 University of Ghana http://ugspace.ug.edu.gh I went to the flagstaff house, that is the Office of the President and I was going a certain way and I asked, where is the ramp? And they said that place is locked and I said then open it because I need to go through there…oh we can help you and I said no, nobody will help me up. I want to go to where I can go in easily. So when I feel the least comfortable is when people don‘t understand that access is my right and they think by carrying me, they are helping me, if you understand. They are not giving me access but they are ready to lift me because it is the easier way for them, let‘s just lift her in but opening a door doesn‘t make sense to them. Maame had another experience similar to her experience at the Presidency. This was at a transport terminal and she says that: I went to the Metro Mass place and it‘s just a small ramp that they need for you to enter and I had to be manoeuvred and I said this doesn‘t take much. A bag of cement is all you need so I will come back and I will expect to see a ramp. Little, little things that will make a difference so that one doesn‘t feel like oh, I‘m different or I‘m a bother, straight forward things. If we are thinking people, we put them in place without somebody even coming to tell us. The offer to lift her was a gesture supposedly meant to show acceptance and willingness to accommodate her but the fact that the door which would have given Maame access was locked in the case of the Presidency, and the fact that there was no ramp to enable her access the transport terminal are signs that the facilities exclude persons with disabilities. It shows an institutional lack of sensitivity and acceptance. People do not care about persons with disabilities enough so as to provide or keep access routes open and neither do they expect persons with disabilities to come to such ‗noble‘ places. That is why the door to the access route at the presidency would be closed. Zola (2005) posits that persons with disabilities often feel secure and accepted when they have access to facilities and services in the built environment. As a result, they tend to desire to remain in these accessible spaces for as long as possible. This is, however, not always 220 University of Ghana http://ugspace.ug.edu.gh available to persons with disabilities as they struggle for access, attempt to deal with the insecurity it breeds as well as overcoming the subtle communication of non-acceptance that tends to dominates their social engagements and experiences. Imrie (1996) describes the situation where the design and construction of the built environment keep out persons with disabilities as `design apartheid‘. This is because the built environment is constructed with the needs of non-disabled people prioritised over the needs of persons with disabilities. In many cases, modifications of existing facilities are not done to facilitate easy access and usage, thereby excluding persons with disabilities (Shaw et al, 2012). According to Zola (2005), accessibility needs of persons with disabilities include appropriate regard for the heights, widths, and depths of doorways, availability of properly positioned sinks and tables as well as closets and all other spaces through which an individual with disability will be able to connect with the society around him. This brings to the fore an additional prevalent form of denial as an expression of stigmatisation that middle-class persons with disabilities have to contend with. It exists in the lack of physical access to facilities. As indicated earlier, the service industry experiences include occurrences at banks, hospitals, and transport terminals. These sites are, however, not exhaustive of the service outlets at which middle-class persons with disabilities experience the co-occurrence of acceptance and rejection. It does appear that the service industry happens to be where the participants, as middle-class persons with disabilities, experience the highest forms of stigma. This is because for most of the participants, their encounters with service providers are usually the first time that they engage particular service providers in the respective spaces. In such situations, the middle-class status of the participants are often not known and that exposes them to the full range of stereotypes that persons with disabilities are often associated with, and hence the 221 University of Ghana http://ugspace.ug.edu.gh stigmatising treatments that they experience. It is important to note that the nine participants who have had stigmatising experiencing from service providers do not differ from those who did not report of any in terms of type of impairment, when the impairment was acquired or any visible identity marker. Stigmatising treatments always come from particular people who operate in particular spaces and hence, if you are a middle-class person with disability and you appear in such stigmatising spaces, the stigmatising treatment will be your experience. Conversely, there are spaces where similar services may be offered but where the providers may be ―wise‖, for which reason they would not stigmatise persons with disability. It is difficult, if not impossible, for middle-class persons with disability to know beforehand what experience to expect with service providers, but it is oppressing when you have to approach a service provider knowing that your compromised corporeality could easily become reason for someone to act towards you in an unpleasant and exclusionary manner. Contextualising Acceptance and Rejection of Middle-Class Persons with Disabilities As indicated earlier in the thesis, the social relational model of disability conceptualises disability by focussing on how social barriers disable and restrict persons with disabilities and how the impairment also limits an individual‘s ability to match the expectations of society and take up opportunities and resources in the society or environment. These two determinants of the disability experience are dependent on contextual factors. In addition to that, they emerge out of a relational process that is not absolute, but rather relative to the relational context and in this case, subject to the institutions‘ relational dynamics. Using the social relational model 222 University of Ghana http://ugspace.ug.edu.gh as a frame of reference, I discuss the relational, situational and negotiated processes that lead to different outcomes in the experiences of disability stigma within the institutions. For the participants of this study, the stigma that they experience in various spaces is different for different people because of the influence of varying situational and individual factors that combine to produce that stigma. Given that stigma is a relational phenomenon, the kind of people an individual interacts with and the kind of social spaces that a person with disability finds himself or herself in, have a lot of impact in the kind of stigma that will be manifest, if any at all. Jeanette has been made a preceptor for interns at her place of her work despite her speech impairment, an indication that her impairment is not an inhibition in that institutional space. George was involved in an accident not long after he had been promoted at work. After several months at home, he returned to occupy his position which had been reserved for him while he sought for remedial care. Conversely, Akosua has been denied the privilege of covering any foreign assignment at her place of work and Yakubu was almost denied a promotion when it beckoned. With regards to churches, Daniel is a lector and is involved in liturgy but Ezekiel was not allowed to play coterminous roles in his church. What is apparent is that, impairments and the stigma that they elicit, affect people differently depending on situational factors. In some cases, people who have similar impairments may have different outcomes of stigma experiences. The kind of people that middle-class persons with disabilities interact with is also very important in the consideration of stigma. People who have high awareness of disability and do not stigmatise or oppress persons with disabilities, described as ―wise‖ by Goffman (1963), often make their interactions with persons with disabilities non-stigmatising. Maame referred 223 University of Ghana http://ugspace.ug.edu.gh to her engagements with some of her friends who interact with her in ways that do not bring her disability into focus but detests the company of people who show through their actions and inactions that they are sorry for her. Daniel also enjoys the company of his playmates who ―push and shove‖ him on the playfield because he believes they respect him as a human, not anything else but he detests those who sometimes suggest that foul plays he makes should be ignored because he is an amputee. In all of these, it becomes obvious that different people whom middle-class persons may be in interaction with may, or may not stigmatise them with their actions and inactions. These cannot always be predetermined because experiences are influenced by complex situational and relational processes of acceptance and rejection. What is obvious from the study is that persons with disabilities interpret people‘s actions through their own frames of reference. Behaviour that may be considered stigmatising and unacceptable by one person may not be seen as offensive by another. It is for this reason that Yakubu, Akosua and Gabriel do not want to accept any outward manifestation of sympathy on the basis of their disability because they consider that to be paternalistic, patronising and condescending. George and Tony on the other hand see the expression of sympathy shown to them as a sign of acceptance and willingness of the other party to assist and integrate them in social activities. It is not to say that George and Tony do not consider any behaviour to be stigmatising, but rather, both of them made specific claims about being comfortable when they are shown sympathy, unlike the others. Nevertheless, since the components of social actions always differ, the responses of middle-class persons with disabilities to stigma in the institutions are also likely to vary and how the encounters may be construed would also vary. 224 University of Ghana http://ugspace.ug.edu.gh Being middle-class, the participants aspire to take middle-class opportunities and resources but their impairment creates and increases the relational gap, the mismatch between the individual and the environment that makes it difficult for them to break free from the stigma. It does appear that those who seek the biggest opportunities within their institutional spaces are the ones likely to be most stigmatised. That is why Yakubu was almost overlooked for the headship appointment under inexplicable circumstances, Agnes was thrown out of the hospital by the doctor and Jacob‘s expectation of salary increment and promotion has been left hanging. When the participants appear to accept their spaces and do not challenge for much, they appear to be undisturbed. This is largely the case of George, Tony and to some extent Martha. As explained earlier, the gap between the functional capacity of the individual and the demands made by society and environment defines a how any individual would experience disability. The functional capacities are also influenced heavily by social class status, that is why all the participants have at one time or the other punched above their weights in challenging the stigma that they are confronted with. However, middle-class persons with disabilities have different capacities on the basis of several situational factors, one of them being their life history. As was discussed in Chapter Five, some of the participants were born into middle-class families and acquired their disabilities as children (M/CA – Jeanette, Matthew, Martha, Gabriel, Ezekiel, Daniel). They therefore grew up with middle-class privileges and support and have remained middle-class in their adulthood. Others acquired their impairments as middle-class adults (M/AA - Maame, Yakubu, George, James) and have used and are using their middle-class position to negotiate favourable disability identities despite the stigma. For some, they were born into lower class families and they acquired their 225 University of Ghana http://ugspace.ug.edu.gh disabilities as children but were supported by their families and now they have become middle-class adults (L/FS - Jacob, Sam, Akosua, Tony). The fourth group had hardly any support from their families despite also acquiring their impairments as children (L/LFS - Agnes, Kofi). They made it into the middle-class by virtue of support they received later in their lives almost entirely from non-family acquaintances. For this group, whom I would like to describe as ―latecomer middle-class‖, the support they lacked as they grew up means that their ability to bridge the gap between their functional capacities and the social and environmental demands is somewhat lower than participants in the other three categories. They are all middle-class now but the different functional capacities mean that different situational, contextual and relational forces are brought to bear in their interactions, and hence, different manifestations of stigma would occur. Different responses would also be made by different people. From these analyses, it becomes apparent that institutional stigma emerges from a relational process that has different outcomes for different people, on the basis of different intervening factors, both from the individual and also from contextual factors. Stigma is therefore not an absolute occurrence. Consequently, the indices of acceptance and rejection vary from person to person, from situation to situation, from particular social space to the other. What is clear from this is that experiences of stigma would never be the same across time and space, because the determinant factors would never remain static across time and space, in the same way as the social relational model of disability posit. 226 University of Ghana http://ugspace.ug.edu.gh Summary From the findings of this study, places of work as social spaces where middle-class persons with disabilities experience stigma, stand next only to the service industry. The participants‘ accounts of their experiences reveal that there is a lot of ignorance about the capabilities of persons with disabilities, as may be seen in Akosua‘s experience with her employer at her new media house and with James‘ colleagues and how they behave towards him after his amputation. Some people lack the awareness that persons with disabilities are as capable of being trained as anyone else and that they are capable of performing under the appropriate circumstance and by that, people stigmatise persons with disabilities and deride their efforts. The contradictions of acceptance and rejection are founded on socially constructed ideals of what the ideal body ought to be like and its capacity to function as expected by society (Foster, 2017). The spoiled identities of middle-class persons with disabilities open them up for stigmatisation even when their social class privileges allow them to join some mainstream social and institutional activities. Shelton et al (2010) posit that individuals who are stigmatised tend to be scrutinised a lot more in downturn periods which renders them more disadvantaged. Ordinarily, however, ableist norms continue to reign in society as persons with disabilities remain ‗othered‘ with all other aspects of their social identities overlooked and diminished (Foster & Wass, 2012; Jammaers et al, 2016; Horton & Tucker, 2014; Mpofu & Harley, 2006). Ghana‘s social, economic and political arena remains very competitive and the presence of a disability severely limits options available to persons with disabilities. Invariably, it becomes difficult, if not impossible for middle-class persons with disabilities to escape the stigma that their disability exposes them to. While middle-class persons with 227 University of Ghana http://ugspace.ug.edu.gh disabilities do not necessarily experience the forms of stigma that persons with disabilities from lower social classes may experience, the subtle forms of rejection, denials and attitudes of indifference that are shown towards them are constant reminders of how disability renders an individual different. The subtle and sometimes strong disapproval that disability receives remains a stain on the identities of middle-class persons with disabilities. A number of people seeking to avoid the shame of associating with persons with disabilities would deny them of certain privileges as they seek to maintain the status quo of spoiled identities caused by disabilities. Stigma makes middle-class persons with disabilities undeserving of unconditional acceptance and recognition. It is stigma that makes people think that persons with disabilities are unworthy and unqualified for recognition. It is stigma that makes people assume that the needs of persons with disabilities are irrelevant since they are not really part of mainstream social activity. They are on the periphery and are not expected to come in, hence the usual afterthought and struggle to accommodate them. As posited by Harriss-White (1996), disability makes people invincible because society does not recognise them or allow them to participate. 228 University of Ghana http://ugspace.ug.edu.gh CHAPTER EIGHT STIGMA AND DISABILITY IDENTITY MANAGEMENT Introduction This chapter presents how the participants manage their disability identities in the face of the stigma that confronts them in their daily lives. These identity management strategies are founded on the participants‘ rationalisation of what constitutes disability and how they respond to these meanings. These understandings are also juxtaposed with the meanings that other people with whom they are in contact with give to disability, particularly to the participants‘ disability and to which the participants are expected to accept, imbibe and conform. These meanings fundamentally determine the categories of persons with disabilities who would be stigmatised in the society and by whom, at what time and at which place. Implicit in this differentiation of disability is the unintended but subtle and sometimes obvious use of class as a marker in differentiating between different categories of persons with disabilities and the forms of stigmatisation that they face. For middle-class persons with disabilities, the use of class would mean that they are ‗not really disabled‘. This brings relational and situational factors that disability and its stigma emanate to the fore. The relational issues surrounding disability mean that the presence or acquisition of a physical or sensory impairment does not necessarily condemn all persons with disabilities to all forms of disability stigma. Rather, the stigma is subject to personal identities and social contexts. The experiences of the middle-class participants discussed in this chapter draw on aspects of the psycho-emotional dimensions of disability, as an extension of the social relational model of disability. Stigma contributes to the burden of impairment and how individuals may 229 University of Ghana http://ugspace.ug.edu.gh respond to the impairment (Rafael et al, 2010). These responses or identity management techniques are intended by middle-class persons with disabilities to alter the kinds of relationships that exist between them and their social environment or in other situations to control their own negative emotions that are roused by social reaction to their disabilities (Bos et al, 2013; Laganà & Hassija, 2012). The former is described by Bos et al (2013) as ‗problem-focused‘ and the latter as ‗emotion-focused‘. The constant experience of being stigmatised, assumed to be incompetent and not getting the required acceptance leads to resistance and the pursuance of an escape route as a way of dealing with the vulnerability, exposure and humiliation that disability tends to elicit. This resistance is often needed as a response to middle-class persons with disabilities being made to feel different, inadequate and ‗handicapped‘. As pointed out by Reeve (2004), internalised oppression tends to sustain the negative stereotypes that persons with disabilities face. Acceptance of and conformance to these negative stereotypical representations of disability would make persons with disabilities becomes what society thinks and expect from them and that is what these middle-class persons with disabilities tend to actively resist with the awareness of their rights and their social opportunities of education and employment (Lusli et al, 2015). Denial of Disability by ‘Self’ Eight of the participants in this study admit to the fact that they have physical or sensory impairments but do not necessarily admit to the impairment being ‗disabling‘ to them. These participants do not define disability in terms of its functional limitation nor the presence of the impairment. The impairment is present and they acknowledge it but it does not limit their 230 University of Ghana http://ugspace.ug.edu.gh ability to work and function at their respective optimal levels, neither does it prevent them from participating in social activities of their choice. As a result of this, they are reluctant in accepting the description of their impairment as a ‗disability‘. Certainly, they count themselves within the brackets of persons with disabilities but they refuse to accept the label of ‗disability‘ in so far as they have not been ‗disabled‘ by their impairments. This is because of the often erroneous perception that persons with disabilities are functionally limited and are incapable of complete integration in mainstream social and economic life. Daniel chooses not to call his impairment as disability but would rather describe his impairment as a ‗challenge‘ or ‗a hurdle in life‘ because as he puts it, ―...sometimes I even forget that I have lost an arm because I do everything that anybody else does.‖ Similarly, Agnes says she does not see herself as ‗disabled‘ and so does not worry about her ‗disability‘ unlike in the past. She does not call herself ‗disabled‘ because she is able to ―walk up and down.‖ She goes on further to say that she does not ―address my mind to that.‖ By this point, she refuses to accept that her disability is a factor in choices that she makes and decisions about her social life. She notes: I don‘t call it disability because what every normal human can do, I can also do the same and so I don‘t call myself a disabled person. I don‘t even want to say that because there are things I do that able-bodied people cannot do. I go to work, I come back. I am able to do what everyone else does. Another participant, James, who has lived with partial visual impairment in one eye since his childhood and only recently had a trans-tibial amputation stated that he never considered himself as a person with disability prior to his amputation, despite his partial visual impairment because he was never inhibited by his vision. These denials resonate with Reeve‘s (2004) position that the presence of the impairment is not necessarily reason enough for the 231 University of Ghana http://ugspace.ug.edu.gh person who has the impairment to identify with the disability. What it means is that these middle-class participants see the label ‗disability‘ as a metaphor for functional limitation, of the kind they do not live with or of the form they do not experience. They are able to work and attend to their duties without difficulty, as they state. Another reason for their denial lies in some of the labels that are used to identify persons with disabilities in Ghana. One commonly used label in Akan is ―Yarefoɔ‖ (sick person) and a number of the participants told me that they had heard people describe them as such. These participants refuse to accept the ―yarefoɔ‖ label because they are not sick, in other words, disability is not equal to sickness, a point that has also been made by scholars such as Grewal, Joy, Lewis and Woodfield (2002) and Lusli et al (2015). To these participants, admitting to having a disability is akin to admitting to being incapable of matching the achievements and successes of non-disabled people. These participants rate their social attainment very highly and believe that admitting to the label of ‗disability‘ essentially takes away the glory of their merits, thereby drawing attention to their impairments. They try as much as they can not to use their disability as a reason not to attain the social goals that non-disabled people seek. Disability, to them, is not and should not be an excuse for non-performance. Gabriel acknowledges the impairment but discounts its ability to stall his performance or capability. He says he has ―limited use of my leg but that doesn‘t mean I am disabled.‖ He introduces an analogy between his impairment and a ‗disabled‘ computer application to make his point that he would have been dysfunctional if he was indeed ‗disabled‘ since a ‗disabled‘ computer application is unusable. He says: We are not disabled, we are persons with disabilities. The disability is there alright but it doesn‘t make me inadequate. When you disable computer 232 University of Ghana http://ugspace.ug.edu.gh application, it cannot be used but in Ghana when you talk about persons with disability, people really think that of beggars. The point he makes about the comparison with beggars is reference to beggars‘ ragged appearance and the use of disability as a metaphor for functional limitations which he believes he, and middle-class persons with disabilities like him, have risen over. In emphasising how the impairment does not limit her in her aspirations, Akosua makes the point that ―I didn‘t want people seeing my disability thing as a hindrance or telling myself that I can‘t do it. When you think I can‘t do it, I will tell you I can do it and I will prove to you that I can do it.‖ The ability to rationalise away the disability and the functional limitation label that goes with it comes from a cognitive ability to momentarily ignore the impairment and the social consequences of the impairments‘ existence. That way, they are able to maintain positive identities about themselves even when they experience the stigma of disability. Kofi, who says that he does not even pay attention to media discussions on disability because he does not consider himself to be disabled, indicates: I have a perception that disability is not inability. It‘s your mind. You can do everything. It‘s the perception. Society has made you like that. As you see me sit here, am I disabled? It‘s the society. If you listen to the society, even if you are tall and you listen to the society, they will make you disabled. So why should I allow you? Being able to momentarily extricate themselves from ―disability‖ as a label and the social meanings that come with it stems from the fact that they regard their social statuses as credible within the social context they find themselves in. There is the recognition of the limitation that occurs because of the impairment but there is also a show of desire and ability to subdue the challenge presented by the impairment. These middle-class persons with 233 University of Ghana http://ugspace.ug.edu.gh disabilities are therefore able to attain levels commensurate with levels that society prescribes for everyone, including the non-disabled. Akosua, in explaining herself said ―I love to do high jump so I did high jump when I was growing up…of course, you can always adapt to your own way of doing things. So school, I [studied] Agriculture so it means that I went to the farm. I love to do the everyday things.‖ The participants place a lot of emphasis on what they are ―able to do‖ and what they are able to achieve despite the presence of the impairment, as a way of disproving the belief that they are ‗disabled‘. Their ability to do this allows them to focus on their achievements as a way of comparing their achievements with non-disabled people. Being ―able to do things‖ is often a legitimate basis for middle-class persons with disabilities to reject their disability labels, as has been observed also by Grewal et al (2002). For instance, Ezekiel says that: The things I will say I‘m unable to do are things that I should do with my legs, but there is something I always say, that you will be more disabled if you accept the disability in your mind, because it is when you accept in in your mind that it affects your physical body. If you don‘t accept in your mind, you can overcome everything. Sometimes, the assurance that enables middle-class persons with disabilities to rationalise their strengths comes from non-disabled actors they interact with, as was in the case of Yakubu, a septuagenarian physically challenged man who says that his doctor ―put in his head that he should not consider himself as disabled.‖ Yakubu believes that this was the assurance that served to give him the strength in order that ―he would not get stuck, lie down and ask for help and sympathy‖, traits often stereotypically associated with persons with disabilities. He believes that he ―did not get stuck, lie down and ask for help and sympathy‖, like most persons with disabilities would otherwise have done. To him, his ability to ‗deny‘ the 234 University of Ghana http://ugspace.ug.edu.gh disability allows him to take control of his life and only seek for help from his family on his terms, when he needs it and not when someone else determines that he needs it. In fact, when I visited him at his home for the interview, he was standing outside and the front entrance was locked. His wife who was inside came to unlock the door without opening it for us and walked away. Yakubu used it as an illustration to tell me that ―I don‘t need too much help. In this house, unless I call for help, nobody helps me.‖ To Yakubu, disability means losing your independence and he thinks ―it is not good‖ for him if that happens. His ability to continue working and living a fruitful life after his acquisition of the impairment means that he did not see himself as a ―disabled‖ person. The denials that these eight participants communicate are their means of distancing themselves from their disabilities (Kusow, 2007; Snow & Anderson, 1987). Kusow (2007, p. 4787) explains distancing as the situation ―where stigmatized individuals or groups disassociate themselves from those roles, associations, and institutions that may be considered as stigmatizing.‖ By their refusal to accept the disability label, these participants state their unpreparedness to conform to and enact disability roles or even make use of institutions or join associations that bear marks of disability and by extension, the disability stigma which they seek to avoid. Snow and Anderson (1987) refer to their reluctance to conform to the disability roles as role distancing. In effect, middle-class persons with disabilities manage their identities by denying their disabilities, particularly, the limiting influence on their functionality by distancing themselves away from same. 235 University of Ghana http://ugspace.ug.edu.gh Denial of Disability by Others Given the deeply rooted stereotypes about disability that continue to persist in society, there are equally deep seated expectations about how persons with disabilities look like and how they are expected to behave. For this reason, individuals who ‗look‘ like persons with disabilities but do not ‗behave‘ like persons with disabilities have difficulties being recognised as persons with disabilities (Reeve, 2004). Middle-class persons with disabilities are confronted, often on a daily basis, with the idea that they are not ‗disabled‘ and should not identify as such despite the fact that their impairments are visible. These middle-class persons with disabilities are expected not to admit their ‗disability‘ and identify with same because of the quintessential imagery that society holds for who ‗persons with disabilities‘ are and how they ought to appear. Since middle-class persons with disabilities do not fit the image of the quintessential person with disability, they are told not to accept the label of disability or identify as such, since doing so amounts to demeaning ones‘ self. Six participants shared stories about how their family members, friends and colleagues have questioned their disability identity on the basis that the participants are not ‗disabled‘. For those who seek to deny the disability of the participants, being a person with disability goes beyond the presence of the impairment. Disability to them is also a social class marker and since the participants are middle-class, it becomes impossible for them to become persons with disability. Gabriel states that, ―people around me don‘t see me as a person with disability simply because of the education I‘ve had and the opportunities I have had.‖ Akosua tells of her encounter with a friend of hers whenever she reminds her friend of the need for her office to be more sensitive to the needs of persons with disabilities. Akosua said: 236 University of Ghana http://ugspace.ug.edu.gh I fight my friend all the time…and she says ‗you get away…do you have a handicap? You, what you can do, can we do it?‘ And I‘m like no, no…That is what they say. They think I don‘t have a challenge at all. These responses from the participants point to the use of one‘s achievements as a means of disqualifying an individual with impairment from identifying as a person with disability. The difficulty of these participants in getting their associates to accept their disability identity is in line with Reeve‘s (2004) position on acceptance of the disability identity. Simply because one has had high education or holds a high position in an institution means that the person is not to be identified as a person with disability. The belief that persons with disabilities are in the lower social classes comes up again. The fact that middle-class persons with disabilities have had several opportunities in their careers and in their education is, therefore, used as a valid reason to separate middle-class persons with disabilities from the ‗typical‘ person with disability per the perceptual definition of disability with its class undertones. In Akosua‘s case, her friend questions whether she has a ‗handicap‘. Behind that question is the belief that a person with disability is ‗handicapped‘ in his or her aspirations and can possibly not rise to Akosua‘s level. By that logic, Akosua, with her education and career is therefore not qualified to hold herself out as a person with disability because she is not ‗handicapped‘. In accounting for why this occurs, I refer to a study by Davis (1961) when he states that: In the first, the normal normalizes his perceptions to such an extent as to suppress his effective awareness of many of the areas in which the handicapped person's behaviour unavoidably deviates from the normal standard. In this connection several of the informants complained that a recurring problem they have with close friends is that the latter frequently overlook the fact of the handicap and the restrictions it imposes on them. The friends thoughtlessly make arrangements and involve them in activities in which they, the handicapped, cannot participate conveniently or comfortably. (p. 130) 237 University of Ghana http://ugspace.ug.edu.gh Davis‘ (1961) statement also typifies Akosua‘s experience with the Ghana alumni association of the British university she attended. She told me that the group meets occasionally to socialise but their meetings are usually characterised by hiking expeditions which she does not find convenient. That Akosua‘s impairment will be ignored by an association which is not very large, and whose members know Akosua very well would lead anyone to question what they make of her disability and her ability to join the hiking trips. Such is the belief that middle-class persons with disabilities ought not to identify with ‗disabled people‘ that Maame‘s husband‘s cousin once called Maame‘s husband to tell him that he had seen Maame on TV with some persons with disabilities and wondered why she was there because as he put it, ―she was not one of them.‖ The question, therefore, is who are ―them‖? Or better still, why is she not one of ―them‖? The answers to these questions lie in the perception that persons with disabilities are ‗disabled‘ and have functional limitations that put them in the lower social classes. Alternatively, a ‗hierarchy of impairment‘ has been constructed (Reeve, 2004) such that ‗true‘ persons with disabilities have severe disabilities which are functionally limiting and those who have them are fully functionally impaired and are unable to do much for themselves, unlike the middle-class persons with disabilities. It is for this reason that the journalist and civil society advocate in Maame, a wheelchair user, is still not seen as a ‗person with disability‘, because she does not appear to be miserable and pitiable. Yakubu has had similar experiences. Once he was travelling with some colleagues and when he told them he wanted to see the president of the local disability association, his colleagues told him that ―you‘re not a cripple.‖ This was despite the fact that they were aware that he was 238 University of Ghana http://ugspace.ug.edu.gh physically challenged. One of Yakubu‘s officers asked him why he should ―associate himself with cripples.‖ In this instance, Yakubu is not seen as a ‗cripple‘ even though he admits that he has ‗crippled limbs‘. He is questioned about his association with ‗cripples‘. Again, this is a manifestation of the belief that persons with disabilities are not worthy of the association of a middle-class person. Conversely, middle-class persons with disabilities are not expected to relate with people below their social class. Yakubu has the impairment, just like the other members of the disability group but the perceived difference between him and the other members of the group comes with the assumption that whiles Yakubu is a middle-class person, being a senior figure in the administrative set-up of his office, the other members of the disability association are very likely the usual beggars or people on the fringes of society. To emphasise his middle-class position as his identity and not his disability, his cousin visited him in his office and wondered how Yakubu was ‗disabled‘, despite knowing that Yakubu had been paralysed after a road traffic accident. For Yakubu‘s cousin, there was a disconnect between being a well-educated well-to-do person of repute on one hand and using a wheelchair and identifying as a person with disability at the same time on the other. To some extent, one may question the logic used in arriving at such a conclusion but it also highlights the misunderstanding that people have about disability. It also reveals the curiosity and scrutiny to which persons with disabilities are subjected. Other people attempt to determine whether or not they are qualified to identify as persons with disabilities (Reeve, 2004). These denials by others are also seen in how some people talk about disability, even in the presence of their friends and kin who have impairments. Gabriel recalls an instance when he was travelling in a car in the company of his friends and they encountered some persons with 239 University of Ghana http://ugspace.ug.edu.gh disabilities who were begging on the streets. The comments made by Gabriel‘s friends bring the issue of understanding of disability to the fore. He said that: When I am moving with my friends and they see other persons with disability begging on the street and other things, the comment they pass, I say eeigh. If I hadn‘t gone to school, I would have been the one they are treating this way. When they say certain things like these people koraa, they worry us too much. Is this the place to beg for money? Disability is a problem. I pray it never happens to me. They will be saying things like that in my presence and they forgot that I am there. Gabriel‘s friends see disability as a problem, but not for their friend Gabriel, possibly the reason why they are able to make such comments without any regard for his presence. Gabriel recalls another experience he had in the run up to the 2016 general elections in Ghana. He had gone to a polling area to supervise the work of an agent. When he inquired how many persons with disabilities had been registered at that polling station, the agent‘s response, according to Gabriel, was that, ―as for here we are fortunate oh, we don‘t have such people…as for us we are blessed.‖ The references to prayer and blessing not to have a disability in statements are made in the presence of a person with disability without the realisation that he possesses the trait that gives the people who are being talked about their definitive identities. Gabriel‘s impairment is, however, not seen or perhaps it is ignored because he does not look like ‗them‘, neither does he behave like ‗them‘. When Gabriel‘s friends say that ―they pray that it does not happen to them‖, they address the disability but embedded in statements of that nature is an abhorrence for the poverty and the destitution that often come with having a disability. They have a friend in Gabriel whom they see but they address persons with disabilities who are on 240 University of Ghana http://ugspace.ug.edu.gh the streets as if their friend does not belong to the ‗type‘ of persons with disabilities who are on the streets. To them, he is not, because he is not begging on the streets. Middle-class persons with disabilities are aware that others in society do not regard them as ‗persons with disabilities‘, a situation that essentially removes much of the stigma that ‗real‘ persons with disabilities have to experience. Being aware of this situation, these middle-class persons with disabilities also work at entrenching the belief that they are indeed not ‗disabled‘ and ought not to be stigmatised as the ‗real‘ persons with disabilities are. This is because a number of persons seek to deny their disabilities, as explained earlier. Sam states that: If you have a job, they look at you differently, if you are 40 years and your parents are giving you food and everything, they don‘t respect you. How are they to feel about you? You are not working…I completed university, I came home and found a job, doing a lot of things, sweating, and I got the respect. If I‘m not working, they will look at me. That‘s it. In Sam‘s assertion, his level of education and employment status earn him respect in the eyes of the society. The respect that he believes he has, to him is similar to what any non-disabled person would be given. To Sam, the respect he has is not given to persons with disabilities who do not have as much formal education as he does or are not employed and are thus dependent on their family relations and benevolent people for their survival. The fact that he has not made himself a nuisance to the people around him separates him from the ―other‖ persons with disabilities. Beyond these, the appearance and demeanour of middle-class persons with disabilities also serve to displace some of the stigma that lower-class persons with disabilities have to deal with. Daniel states that: 241 University of Ghana http://ugspace.ug.edu.gh It is the way I carry myself around. People would not exploit you because they also think that you don‘t look down on upon yourself in the first place, because I won‘t come to beg from you. I try to live within my means. I do not make myself vulnerable to anybody. The fact that associates of middle-class persons with disabilities would not stigmatise or treat their ‗disabled‘ friends as the ‗real‘ persons with disabilities also raises other issues. First, middle-class persons are not stigmatised because their achievements and high social class positions are known by their non-disabled associates and second, these middle-class persons with disabilities are vulnerable to stigmatising treatment from people who may not know them and their social and economic accomplishments. In places where these middle-class persons with disabilities are not known, they would experience the same stigmatising experiences that lower-class persons with disabilities face in their daily lives, at least until their social class position becomes obvious to the people around. Gabriel, in expressing his worry at being stigmatised and treated crudely states that: It is serious. So sometimes they may not do it to you directly simply because of your status in the society but the question therefore is, so if you also appear before someone who doesn‘t know you and you will be in that same position. Sometimes you are forced to put on something that will be appealing. Because seriously speaking if I put on slippers and get into the street, what people will do to me... Another evidence of social class influence in the stigma that middle-class persons with disabilities experience comes from the people who were once in lower social class position but have risen to high social class position. The denigration that they once experienced is replaced by acceptance, with the focus being shifted from their ‗crooked bodies‘ which was once the reason for the stigma to their social achievements, which becomes the basis for their 242 University of Ghana http://ugspace.ug.edu.gh social acceptance. Kofi recalls an encounter with a woman who had previously insulted him because of his disability. He said that: I went to a funeral about a month ago…a woman who insulted me some time ago and gave me knocks…she locked me inside a room oh. When we were greeting at the funeral, I saw the woman and her daughter and the woman was like…look at your husband and how good he is looking…she asked me, are you married? Then come home to perform the rights for her hand in marriage oh…God will punish you! Kofi had become acceptable to the woman to the extent that she was ready to consider him as a suitor for her daughter not because his impairment has vanished, but rather because he has a good job and a decent income which tell on his appearance. The emphasis on social status and achievement, which become the basis for the respect and non-stigmatising conduct towards middle-class persons with disabilities is maintained by the middle-class persons with disabilities‘ ability to recognise that they are not considered in the same light as persons with disabilities from lower social classes and also their ability to sustain themselves in the higher social class position. In Sam‘s words: When a person with disability is working, and the person is taking care of himself, there is that societal respect, yes. That is what I‘ve observed… where I live with my wife and children, my landlord gives me respect and the reason is that I‘m able to pay my rent but if you don‘t do that, you lose their respect. So once I am able to take care of myself, people will look at me and say, look, the deaf person, I‘m a deaf person but I can do many things. I have this and I have that, and people respect me because you are able to find a job and take care of yourself. The society respects that. The denials by other people are, however, not always appreciated. The middle-class persons with disabilities sometimes see the denials of their disability by others as a denial of their person or identity which in itself is stigmatising enough. The participants reckon that denying 243 University of Ghana http://ugspace.ug.edu.gh their disability amounts to ignoring a critical part of their make-up which influences their daily lives and the choices that they have to make. The comments that are made in condescension of who persons with disabilities are and how people ‗pray‘ never to have a disability are stack realities of middle-class persons with disabilities‘ experience, where people overlook their disabilities in favour of their social class positions. For Gabriel, whose friends not only deny his disability but also want him not to admit to it, he says that: Sometimes, when certain things come up and then say…some friends try to let you know that oh come on you cannot be talking about the disability and that is the problem I always have with them. I would want you to appreciate the fact that yes, this is my situation, but that does not limit you, but if you ask me, you, what shows you are a person with disability? Then it means you are not even seeing me. I will rather want you to see it and appreciate me despite that. The participants of this study have a strong desire that their disabilities are recognised as part of their personal identities, but only in so far as the disabilities do not become the basis for ascription of incompetence or rejection and exclusion. The participants see the denial of their disabilities as ample evidence of a misunderstanding of what constitutes disability and unwillingness on the part of those who deny their disabilities to accept their personal identities. Abilities as Basis for Rejecting ‘Disability’ as a Label A common thread that runs through the responses of a number of the participants is the refusal to ‗accept‘ the disability label. Eight participants emphatically acknowledge the fact that they have the impairment but to them, accepting the disability label means that they are ―lowering‖ themselves below what the ―average‖ human or non-disabled is able to do. The rejection of disability as a label, allows them to compare themselves favourably to non- 244 University of Ghana http://ugspace.ug.edu.gh disabled people. The comparison is done on the basis of what they have achieved in their social and economic lives as against what they may not have been able to do because of their disability. Martha says that she ―hates being seen as a disabled person…I always want people to think of my capabilities and forget about my disability.‖ To her, focussing on her impairment amounts to dwelling on a perceived weakness that she has but she would rather that people focus on her strengths and capacities, just like non-disabled people‘s capacities will be considered primarily. Agnes also says that she wants ―things done on my own just like everyone else. I don‘t let this condition take me over.‖ There is a sense of independence that she desires and does not want her disability to get in the way. The participants‘ construction of their ‗abilities‘ in terms of their functioning capacity and their productivity is similar to findings of a study by Jammaers et al (2016). In their study, persons with disabilities emphasise their agency and productivity as they create positive identities that are meant to challenge stereotypes of less productivity that disability often carries. For middle-class persons with disabilities, the importance of feeling independent cannot be overemphasised. Independence is constructed as a sign of strength and strength is a necessary device needed to challenge and avoid the disability stigma (Hale, 2010). For Jacob, he says that ―What I like most is…the fact that I have not become so much of a burden to my parents.‖ He expresses his satisfaction in not being dependent on his parents but being able to provide for himself and even support his parents financially from time to time. In the case of Yakubu, the rejection of disability as a label served as a way of challenging him to follow through his medical rehabilitation and also becoming less dependent on the people around him. He wanted to become as independent as he could possibly be, because he believed that 245 University of Ghana http://ugspace.ug.edu.gh becoming less dependent would also make him less stigmatised as a person with disability. He makes the point that: Look, my doctor told me…disability is not inability…so once he told me that,…it meant than if I got up and I worked hard, I would manage…I kept that at the back of my head that I would never give up. So, after one and a half years, I recovered substantially…normally you are dependent because you cannot walk, you cannot do anything. You are in a wheelchair, somebody is helping you to the bed and out so, as soon as the doctor told me this and I could get out from the bed, I never went back, I never went back to the wheelchair. Well, I don‘t use a wheelchair now but that is where I started from, if not you will be dependent forever. Look, don‘t pity yourself, don‘t let anybody pity you, work at yourself. Middle-class persons with disabilities emphasise their unbridled desire to be seen as ‗normal‗ human beings and not as handicapped people whose disabilities make them dependent on others for access to opportunities in the mainstream social and economic spaces. As a result, middle-class persons with disabilities may refuse to accept favours extended to them on the basis of their disabilities. The rejection is a way of communicating unwillingness to accept being seen as persons with disabilities, as that will invariably validate the stereotypes about persons with disabilities being weak and cap-in-hand – handicapped. Daniel recounts experiences from his youth when he would refuse to attend some recreational events because the organisers offered to allow him to enter the event grounds without paying because he was a person with disability. Agnes goes on further to say that: Normally when there is a queue, some people will like to consider me and ask me to bypass the queue but I don‘t like that thing. I don‘t want people to think that I‘m like this so they want to show consideration and pity towards me. I don‘t like that. Whatever I do, I just want to struggle and get it on my own. 246 University of Ghana http://ugspace.ug.edu.gh For Kofi, he believes ‗accepting‘ his disability and ‗associating‘ with persons with disabilities is indicative of a willingness to play second fiddle to non-disabled people. He does not attend meetings of the disability association as a sign of his rejection of the disability as a label and as an identity. He maintains that he wants to fight for opportunities in life just like any person, not as a person with disability. He says that: I have never attended their meetings because I believe that if I go there, they will pollute my mind. They will allow me to feel that…they want sympathy from government and people. I am working, if you say your legs have been amputated and you will sit there, do so. The only thing is that I don‘t have the height so I don‘t want the situation where people will feel sympathy about me. Can you believe even when I fall sick, I don‘t tell people? As I sit here, I am unwell but I don‘t tell people about it. Maybe my doctor… The desire not to be seen as ‗disabled‘ also makes middle-class persons with disabilities refuse to be pitied. It is for this reason that Kofi does not even tell his family and friends when he is unwell because he believes that the sympathy they will show to him would not only come because he is unwell, but rather because he is a sick person with disability. To avoid being seen as a sick person with disability, he chooses not to attempt getting sympathy for his sickness. Pity to middle-class persons with disabilities is a sign of stigma and accepting it means accepting all the morbid baggage that comes with it. They see pity as a form of condescending treatment that emanates from the stereotypes that exist about disability. Accepting the pity therefore becomes accepting the belief that persons with disabilities are miserable and ought to be cared for in a paternalistic manner. It is for this reason that Maame recounts an instance when she was on admission at the hospital that: A friend came with another friend and as soon as she entered the room, she started crying and I asked her to leave, and I said if you are going to cry, please….because she had heard I was ill and she came in and when I got ill, 247 University of Ghana http://ugspace.ug.edu.gh because I was cramping, my hands were in a position like this. I couldn‘t move so it‘s like she knew me before and she came in and it was like a big difference. So her emotional reaction was to cry and I told her to leave. I don‘t want crying people around me. So that is the way I also handle that. Sometimes, middle-class persons with disabilities do not also accept that their disability inhibited them in their progress. Some, like Yakubu admit that the disability made him refuse the prospect of taking up a job abroad. His admission does not, however, mean that he was limited in his aspirations by the disability. He declined the appointment in order to continue with his medical rehabilitation as he had not recovered well enough to attempt taking that position. Subsequent to this, he earned two major promotions in his career, rising to the top of his unit. Agnes on the other hand, is of the view that she does not accept that her disability has interfered with her progress in life. She thinks that where she is currently is what her strength and ability have brought her and not any limiting factor occasioned by her disability. She says: I won‘t accept that I could have gone ahead in life but for my condition. If I couldn‘t do anything then it is how I didn‘t get any help and had to cater for my children alone and not because of my condition. It was the struggles I had to endure from home and that have brought me here. Agnes ascribes whatever social and economic difficulties she has not to her disability but to the fact that she had little support from her family. She is sure about this because her sister who is non-disabled did not get much support either and so her disability does not account for what she describes as her challenges. In fact, when she tells the story of her life, she never points to any time that her disability stalls her or becomes a reason for any difficulty. Even though some middle-class may acknowledge the interference of their lives by the disability, particularly for those whose impairments occurred in their adult lives, they tend to emphasise 248 University of Ghana http://ugspace.ug.edu.gh their strengths and minimise the constraining effect of the disability as a way of pushing their capabilities to the fore. Some middle-class persons with disabilities in their quest to reject the disability label also decline opportunities for persons with disabilities. Daniel has a trans-radial amputation but when he was applying to enter the University for his Bachelor‘s degree, he declined to indicate on his application form that he had a disability. His decision not to use his disability as a means of getting his preferred subject of study stemmed from his desire to be seen as being capable of competing on the same pedestal with non-disabled people, in order that his achievements will not be deemed to have occurred on the back of favourable treatment given to him because of his disability, something that could eventually point to his weakness and inability to compete with non-disabled people. Maame also has issues particularly with persons with disabilities whom she thinks try to milk their disability for all its worth. To her, doing so would have been ―playing the pity card‖ and that was something she did not want to do. She does not want to see or thought of as ―going around with the begging bowl.‖ She is of the conviction that doing so would give opportunity for people to stigmatise you and ―trample on you.‖ Much as these middle-class persons with disabilities are averse to other persons with disabilities who are engaged in begging, there is the recognition that not every person with disability is privileged enough to stand up against the stigma and oppression of being a person with disability. Some middle-class persons with disabilities recognise their own privileges and are a little hesitant in ascribing the challenges of persons with disabilities in lower social 249 University of Ghana http://ugspace.ug.edu.gh classes to their desire to be helped all the time. Maame sums it up when she makes the point that: …not everybody is from a privileged background so not everybody can even pick themselves up and I appreciate that, because if you are born in a family that did not support you in any way, they didn‘t see you through school, so you have nothing, you have no skill, what are you expected to do? I know it‘s hard. Somebody cannot help but ask to be pitied because they have nothing to hold on to. I appreciate that also. I‘ll rather they wouldn‘t beg but that is the way of life. Maame, in admitting to her privileged class position says that she is ―a little opinionated to feel stigmatised.‖ Her ability to confront the stigma that she is exposed to allows her to almost conveniently deflect the stigma that would otherwise oppress her. Ezekiel makes a similar point about his own privileges and how they may have contributed in his progress when he says that: Maybe if they had gotten the kind of foundation that I had, or even half of it, they could have gone past me. For some of them, if they had gotten just a little support from their family, they may have gone past where I have reached. The lack of support may account for why they are low. Daniel puts his ability to deflect the stigma away from the way he ―carries himself around‖ even though he alludes to disability being a ‗burden‘, a sign that there is recognition of the weight of oppression and the effort needed to push it away. Daniel says that: You see the thing I have realised in life itself is, whatever burden you carry, it is the way you carry [yourself] that makes it visible or invisible…the way I carry myself around, you will not have the guts to do it and I will treat you fairly. When I say fairly, I will stand for my right when I need to… when I went to Nima like this, I went to a place and the boys were gathered and were smoking Indian hemp but then the way I entered and greeted them, sat down and we even spoke, virtually nobody even saw any disability. We interacted. It was just fair enough and I went my way and they went their way. 250 University of Ghana http://ugspace.ug.edu.gh Sometimes, middle class persons with disabilities are able to manipulate situations in their favour. What happens is that, they mostly reject the disability label but sometimes, when it would work in their favour and when they want that ease of access, they will play the pity card, accept the disability label and then gain the favourable offers which they seek. Jeanette tells of an encounter when she appeared for an oral examination once in school when she: I pretended to be this fragile girl in pain after surgery so when they saw me, they were like…oh you‘re not well you just had your surgery…I said yes please. Everybody who went in was asked to do calculations on the board and then explain but when I went in, they were like…we don‘t want to worry you, just name the machines on this table and go and rest and that was very easy. For this same person, when she has not asked for pity and you proceed to offer it, she says she would refuse and even ―make you feel bad‖, to the extent of ―making you regret‖ pitying her. When Gabriel contested a local level political position, his opponents referred to his disability as a sign of weakness and stigmatised him. They told the electorate about it and campaigned against him on that. When Gabriel had the opportunity to address the electorate, in Gabriel‘s own words, he had to ―play smart on their emotions‖: I gave them an Ewe proverb…It is translated as I am a tree, I may not bear fruit but for sure I will provide a shade for my family. So when I said that most of the people felt emotionally attached and people got up and declared their votes for me right there in the auditorium. They said they will vote for me. In the two scenarios above, the participants chose when to accept the pity even though in other situations, they detest the same treatment. It points to a certain deliberate attempt to use the disability sometimes as a means of getting an advantage over non-disabled people, particularly when certain gains are at stake. When Daniel was in a similar position, when he could to use his disability to his advantage, he declined because the alternative was as good as 251 University of Ghana http://ugspace.ug.edu.gh what he stood to lose. In the case of Jeanette and Gabriel, the alternative was a loss of greater impact on their lives. That is why they used the pity to their advantage, to obtain a greater leverage. Elevation of Reputation by Comparison Another means of rejecting the disability label that middle-class persons with disabilities utilise is by comparing themselves with non-disabled people, as a way of proving to themselves and others that they are at same or similar levels of achievement with non- disabled people and that they are sometimes higher than non-disabled people. The satisfaction that they derive from making such comparison is a way of limiting the effect of some of the stigma that they are confronted with and also showing how far persons with disabilities may reach had it not been the constraining effect of the stigma that they face. Eight participants used this comparison to show how satisfied they are with their accomplishments and how their accomplishments are superior to some non-disabled people within and beyond their social circles. Jacob is convinced that he is ―better than some people of my age who have no disability.‖ Being ―better‖ than some non-disabled people, for which reason he says he is also thankful to God, also means that it is not disability that makes one worse off in his or her life, but rather something else, perhaps not having good education, employment and relatively high income, all of which he has. By this comparison that emphasises similarity and sometimes superiority over non-disabled persons, middle-class persons with disabilities are able to deal with the negativities and stigma by their ability and agency to constructing better social identities over their personal identities (Read, Morton and Ryan, 2015). 252 University of Ghana http://ugspace.ug.edu.gh Gabriel alludes to the fact that he became a government appointee to his district assembly at the age of 22 and even won an election to become the presiding member of the assembly. He says this and adds that ―I have done enough to let people know that disability cannot be a barrier.‖ Certainly, he shows how far he has gone even with his disability and in a society where political office at that level is hardly meant for youth at that age. Tony alludes to the house he has built together with his wife. To him being able to do this, despite both of them being hearing impaired is proof of their accomplishments. Tony says that: I have a house I have built myself and there is a man who has bought a land close to mine but he doesn‘t have the resources to build the house. So, when people see me, they really congratulate me…deaf person with a deaf wife and you have been able to put up a house. The comparison he makes between himself and his non-disabled neighbour is indicative of his desire to show that he has not been limited in his aspirations because he has the financial ability to accomplish what some non-disabled people are struggling to achieve. Gabriel does part-time teaching and tells of his excitement at being able to ―work on the minds of able- bodied people.‖ He says it makes him ―feel good‖ and that he is ready to take up a permanent teaching appointment even if the salary is 10 times less than at his current job since it would afford him the opportunity to ―work on the minds of able-bodied people.‖ The satisfaction he derives from this part-time teaching job emanates from the authority he exercises over non- disabled people, as a way of proving that he has the impairment but that has not ―disabled‖ him. Part of his excitement can also be explained as coming from the opportunity that he has to challenge the usual stereotypes about persons with disabilities as social burdens. His ability to challenge the stereotypes, to him, gives him the opportunity to ―leave a legacy‖, as a way of resistance to the perceived weakness of persons with disabilities. This can be situated 253 University of Ghana http://ugspace.ug.edu.gh within Festinger‘s (1954) Social Comparison theory where he argues that people have a drive to engage in self-evaluation and if the evaluation cannot occur on the basis of an objective measure, then other people become the standard against which the individual may evaluate himself or herself. Middle-class persons with disabilities engage in this kind of comparison where they choose their own markers for the purposes of their comparison. The favourable comparison that middle-class persons with disabilities make can also be as a result of mastery of certain skills. Akosua tells me she speaks about 10 Ghanaian languages and when I expressed surprise at her linguistic prowess, her reply was that ―God will not make me like you. He has given you your legs.‖ There is the admission of the limiting factor of her impairment but she believes she has something else that I do not have, to compensate for the challenge she has with the impairment. Her reference to that ―something‖ she does not have is meant to make it obvious to me that I have my legs, unlike her, but I also lack an ability that she has which makes her more powerful. Ultimately, we both have strength as well as a ―weakness‖, thus making us equal. Ezekiel makes a similar comparison when he tells me about an encounter he once had with a certain woman when he was going to church in the company of his wife who also has a disability, and their children. According to him, the woman came up to them and said ―she would prefer to be disabled and have a peaceful marriage and a wonderful marriage.‖ Ezekiel, in commenting on his interaction with the woman said ―a lot of people are disabled in their rooms‖, again drawing attention to the fact that disability may be a weakness but ―other weakness‖ are equally disabling. This way, non- disabled people are also seen as vulnerable people who have disabling traits that may not be as visible as those of persons with disabilities. By doing this, the middle-class persons with disabilities are able to diminish the impact of their own impairments on their lives, whiles 254 University of Ghana http://ugspace.ug.edu.gh emphasising the ―disabilities‖ of the non-disabled people with whom they compare themselves. Sam compares himself with his mates from the secondary school, some of whom have not attained the heights that he has and believes he is better off, compared to them. He says: I have done my Masters, you know, I can even say some of my hearing friends were not able to complete SSS. At times when I meet my hearing friends, they [think] they speak and hear unlike me. I don‘t feel disappointed because after all, I can say I have reached a very high level in terms of my qualifications. When we go for meetings, I have interpreters who sign for me so I do a lot of contributions so it is a plus because I am able to contribute to discussions through my interpreters. To Sam, the fact that he has more education means that his friends are disabled by their inability to complete their secondary education. On the grounds of education, they are disabled, and he is not. This is another way of equating physical or sensory disability with limited social accomplishments. The comparison that Maame makes with other women is interesting. As a result of her disability that partially immobilises her, reproductive labour is out of the question for her within her household and she considers this as ―liberation‖ for her as a woman. She says that: I think on the whole, I am a lot more liberated than a lot of other women… the disability has kind of freed me because I don‘t have to cook for any man…I‘ve never wanted to depend on somebody…in a way I do, yes, now I can‘t do things for myself but even with my husband when we are going out, I tell him oh, you can‘t transfer me so wait for my driver to come because he knows how to transfer me…and that, I think a lot of women…I don‘t know but they don‘t have that freedom. They wait for a man to tell them what to do. They depend on men. Me, I find that a little hard. Effectively, Maame‘s disability has given her the ability to break herself free from the constraints of social norms which would otherwise have required her to perform reproductive 255 University of Ghana http://ugspace.ug.edu.gh labour roles at home as a woman. Though she has lost some functionality with her condition, in her own words, she determines what goes on in her life and does not wait to be told what to do. What this means is that her disability gives her enough control over her own life, in a way that some non-disabled women may not have. She controls the men in her life, her husband and her driver, rather than the other way round because she is able to take responsibility over her life and that for her is liberating. She further adds that: I think they have more freedom, again it‘s about independence but some people, they are able bodied but they are more disabled than I am. Some people can‘t even take decisions. So I thank God that at least I can take decisions even if it means physically I cannot go about to see it through, but in my mind I am very clear. I am very clear, like this is what I would like to do but if i can‘t do it now, it‘s there, it‘s all laid out. Ezekiel also utilises comparison as a tool in putting himself at par with some of the parents of his children‘s schoolmates and putting himself above some others. He refers to his financial abilities as against the abilities of the other parents and believes that he is as capable as the other parents who are non-disabled persons. Ezekiel says that: My children started that school from the nursery so the teachers and the pupils know them and they know us and they know people who started the school with my kids and they have dropped from that school because of school fees, so the proprietor doesn‘t joke with my kids in the school. There are times we pay their school fees ahead of the term so the teachers and administrators in the school know that we are very capable. Being aware of the stigma that he faces as well as the courtesy stigma that his children face in school because both Ezekiel and his wife are physically challenged, Ezekiel goes on further to make the point that he has oriented his children with a defence mechanism which is built on his financial abilities and the numerous trips abroad that he has embarked on with his wife. He uses these to emphasise the point that his disability does not in any way mean he is limited in 256 University of Ghana http://ugspace.ug.edu.gh his abilities. He points out that he has a better life than several other parents of his children‘s school mates. Ezekiel says that: I‘ve tuned up my kids‘ mind that sometimes if you say something to them, the reply they will give to you will make you go and cry. I‘ve told them that if someone says your parents are in a wheelchair, the first thing [they] should say is ‗and so what?‘ and secondly they should tell them that my mum and dad take care of me. I‘m still in the same school with you, and my mum and dad are disabled but they have travelled outside before, have your parents ever travelled outside? I give them so many statements that they can use. Tension and Impression Management Persons with disabilities are always confronted with the need to engage in tension and information management when they get into social spaces. For the participants in this study, this is needed because they are questioned by people on what caused their impairment, what their impairments mean for their lives and perhaps, the most popular, how they manage with some particular activities. The most uncomfortable part is when those who ask these questions are not really known to the participants. Gabriel was once told by a woman he did not know that ―may God give you patience.‖ The comment made was in direct reference to Gabriel‘s amputation which she assumed, by her comment, was a source of worry for Gabriel. Jeanette, with her partial speech impairment was asked by a schoolmate of hers once whether she was speaking a different language. This was because her mate could not really hear her and assumed Jeanette must have been speaking a different language. For Jacob, some passengers with whom he shared a bus found it humorous that he rejected a suggestion that he had pains in his eyes. He corrected them, saying he that he could not see but had no pain in his eyes. These questions, comments and suggestions often put middle-class persons with disabilities in 257 University of Ghana http://ugspace.ug.edu.gh very awkward situations. It means middle-class persons with disabilities cannot escape public scrutiny, neither can they ignore it. For this reason, middle-class persons with disabilities utilise several strategies as they deal with the expressions of curiosity and scrutiny that they are subjected to because of their stigmatised identities. For those whose disabilities are very apparent such as the visually impaired and the physically challenged, they manage tension because they have discredited stigma and those whose disabilities are not so apparent but only revealed after close contact and interaction manage information as they seek to manage their discreditable stigma (Goffman, 1963; Read et al, 2015; Reeve, 2004). Avoidance of Mixed Contacts: Middle-class persons with disabilities are in constant contact with non-disabled people in their schools, places of work, religious congregations and at home. Their stigmatised identities always present a challenge to the nature of interaction and participation that they have in those social spaces. Persons with disabilities, in their quest to avoid exposure to people‘s curiosity and pity sometimes avoid such mixed contact social situations (Goffman, 1963). Goffman explains mixed contact as ―the moments when stigmatized and normal are in the same "social situation," that is, in one another's immediate physical presence, whether in a conversation-like encounter or in the mere co-presence of an unfocused gathering‖ (Goffman, 1963, p. 12). Four participants indicated that they have either used this approach or intend to use it to limit their exposure to stigmatising experiences. Matthew suggests that he tries to avoid engaging some people because he believes his stigmatised identity would let them treat him undesirably. His reluctance to engage certain people points to two things. One, his awareness of his stigmatised identity and second, his abhorrence of the treatments he has been subjected to in the past. In like manner, Jeanette states that: 258 University of Ghana http://ugspace.ug.edu.gh it would be difficult to communicate with people who were not used to the way I talk so to save myself from the problem…the trouble of having to explain myself to the curious people, or having to repeat myself, or having to clarify or explain, I would rather keep quiet to save myself from a lot of explanations…from those who are curious and those who can‘t hear you. Someone would even laugh at you or something so to save myself from all that, I was more quiet outside. Avoiding mixed contact situations allows middle-class persons with disabilities to momentarily escape the stigma of their disability. For Jeanette, her description of the situation with the word ‗trouble‘ is a sign of her frustration from previous experiences when her speech impairment was subject to questions and comments from curious people. She finds it uncomfortable when she is asked to explain why she has the condition and to avoid all questions about her speech as well as the funny and sometimes obscene comments that people make about her, she chooses to keep quiet. Jeanette says ―I don‘t want to draw attention to myself and I don‘t want any drama as…what did you say? What did she say? How come she is talking like this? I don‘t want to go through that drama.‖ Jeanette goes on further to say that she was quieter outside than at home, a sign that her speech was less of a problem at home than it was outside. She adds that: obviously it would be difficult to communicate with people who were not used to the way I talk so to save myself from the problem…the trouble of having to explain myself to the curious people, or having to repeat myself, or having to clarify or explain, I would rather keep quiet to save myself from a lot of explanations…..from those who are curious and those who can‘t hear you. Someone would even laugh at you or something so to save myself from all that, I was more quiet outside. She adds also that: I want to talk and sometimes the pastor will be preaching and he‘ll ask a question and…who knows this? And I will just be sitting down and looking at them and I‘m like look at these people oh, so why won‘t they just get up and 259 University of Ghana http://ugspace.ug.edu.gh answer? Then I‘ll feel like I want to answer but why? People will be like eeigh…I didn‘t hear her, what is she saying blah blah blah…then I‘ll just keep quiet. Similarly, James makes the point about his partial visual impairment that ―I don‘t tell anybody. I knew my own problems.‖ He was reluctant in bringing it up in his conversations and would only do so when it is absolutely necessary that he talks about it. When I asked him why that was the case, he retorted that: …but if you hadn‘t asked me, why should I tell you I can‘t see with one eye? Except where there is a challenge which requires that I have to use the other eye, then I can say that it is not working. Sometimes, when there is an eye test or something, I close the other eye, test the proper one and if I close this one and I‘m testing, I tell you I can‘t see properly with it from the word go so that you don‘t continue doing. So for me it has been something I have kept to myself unless someone asks and finds out because I can read. It was something I didn‘t tell people because you can see it is squinted but that is enough. James‘ partial visual impairment and Jeanette‘s partial speech impairment remain as discreditable stigma in so far as they do not present themselves as persons with impairments. James does not talk about it and Jeanette keeps quiet. For both, there is awareness that once people get to know that they have these impairments, they would be subjected to stigmatising treatment in their mixed contact situations. This is because their stigma would become discredited stigma. The avoidance of such people on the basis of negative treatment that they may be assumed to render is caused by what Goffman (1963) describes as felt stigma. This is the fear of being treated shabbily and being rejected, experiences that characterise enacted stigma and that is what makes middle-class persons with disabilities avoid certain mixed contact situations (Goffman, 1963; Gray, 2002; Lekas et al, 2011). 260 University of Ghana http://ugspace.ug.edu.gh While avoidance has been deployed as a strategy by middle-class persons with disabilities to minimise and sometimes eliminate the experiences of enacted stigma, Kassah et al (2014) argue that overdependence on this strategy may lead to an increase in the actual experiences of discrimination and neglect. When middle-class persons use avoidance, they refrain from entering certain social situations. In the long run, however, they may end up letting several opportunities pass by them. In as much as stigmatising experiences are likely to occur in mixed contact situations, unwillingness to engage and confront it leads to an entrenchment of the stigma without opposition and no information to the contrary. For instance, Jeanette indicates that she would have wanted to participate more in church activities but refrains from doing do to avoid the scrutiny and curiosity of the congregation. She stated that: Sometimes I really want to preach in church or be part of the bible readers in church. Those are my two dreams that I haven‘t achieved yet which I think are still my limitations but I feel that people won‘t hear me and I will draw attention to myself….the same explanations so I should rather keep quiet. For things like that, I feel deprived. Sometimes I feel I should be able to give a talk, a health talk to a congregation or whatever but I feel my voice will be a limitation so for those things I‘ve not been able to do and I feel a bit deprived in that aspect. Jeanette told me about what happened when she went to the studio of a radio station with her class mates some time ago. When the radio presenter invited them to introduce themselves, she was the first person behind the microphone but she run out of the studio in tears and did not say anything because she did not want her speech to be heard, even though she would have wanted to send ―shout outs‖ to her family. In the two instances, Jeanette, being confronted with the choice to either avoid a mixed contact situation or engage fully in it chooses the former. She does so to avoid any stigmatising treatment but she denies herself also, of opportunities to challenge the stereotypes about her speech impairment, much in the 261 University of Ghana http://ugspace.ug.edu.gh argument that Kassah et al (2014) make. Scambler (2009) describes the decision to avoid mixed contact and thereby passing as ‗normal‘ as a heavy price to be paid by persons with non-visible disabilities while Carnevale (2007) describes it as alienating. The decision of middle-class persons with disabilities to avoid mixed contacts is akin to the information control strategy that Goffman (1963) calls ‗passing‘. By passing, persons with disabilities withhold or conceal information about themselves and their impairment so that their disabilities are not easily perceptible by others, allowing persons with disabilities to partly or fully ‗pass‘ as ‗normal‘ people (Carnevale, 2007; Goffman, 1963). Carnevale (2007) suggests that the rewards of passing means that persons with disabilities would try to attempt it as a means of subduing their stigmatised identities. Passing is particularly utilised by persons whose disabilities are not readily noticeable on sight. Wheelchair users, amputees and achondrosplastic people may be unable to pass because their impairments are seen with their appearance. Hearing impaired people, speech impaired people and some visually impaired people can pass successfully by their avoidance of the mixed contact situation. For middle-class persons with disabilities, there is always an uncertainty, fear of disrespect and a sense of insecurity about how they will be received by non-disabled people, particularly those to whom they may not be known. For that reason, middle-class persons with disabilities tend to ‗rearrange themselves‘ by these mechanisms in expectation of the stigmatising behaviour of others (Goffman, 1963). To Carnevale (2007), that persons with disabilities understand the requirement for them to rearrange themselves within their social interaction with non-disabled people, is recognition of their deviation from the norms of society. 262 University of Ghana http://ugspace.ug.edu.gh Embracement: Some of the participants accept their identity as persons with disabilities and embrace their impairments. This strategy of embracement is a means through which persons with disabilities empower themselves as they strive to conform to social goals and meet social norms (Lusli et al, 2015). The responses of eight out of the 16 participants suggest that they embrace their disability identities. Martha says that: Before I became deaf, I was forced to use it [the cochlea implant] and I accepted it because I was shy to be called a deaf person so always I was using it but when I grew up, I realised that no, I‘m a deaf person, why should I be shy about it so I decided to throw it away to be at peace with myself. Sam, in like manner, also indicates that he is not troubled by his impairment because: Apart from me being a person with disability, I can do so many things. I‘m not bothered because I‘m a person with disability. I focus more on the positive side of life. I enjoy life, I‘m not bothered. There are many things that I can do which a number of hearing people cannot do. The emphasis Sam places on not being bothered is similar to Martha‘s statement about being ‗at peace with herself‘. These statements are suggestive of their acceptance of their disability identities and their desire to overlook the stigmatising treatment that they may be subjected to. Sam does not consider his impairment as a limiting factor and chooses to focus on the ‗positive side of life‘. Martha claims she is no longer shy about her impairment and has come to terms with it. She believes that embracing her impairment allows her to free herself from the condition and the internalised oppression it brings. Akosua also ‗enjoys life‘ by her participation in recreational activities against all odds, social and biological. She says that: It is just that these days…unless I didn‘t hear that there is a concert there…That‘s me. I have told myself I don‘t want to pity myself. No, I won‘t. If I can‘t do it I will tell you, this one I can‘t do it. 263 University of Ghana http://ugspace.ug.edu.gh Akosua told me that she has only slowed down on her recreation because of her busy work schedule and would otherwise have participated in every available recreational activity. To her, coming to terms with her impairment and not allowing it to get in her way is a mark of her strength, the empowerment that Lusli et al (2015) talk about. Similarly, Jeanette says she does not allow her impairment to get in her way. She indicates, ―I do my work normally because now my decision is, what have I done wrong? I‘ve not done anything wrong so why should I hide? I should live like a normal person.‖ For these eight middle-class persons with disabilities, there is a conscious effort to indicate a form of acceptance of their impairment, a desire to suppress the impairments‘ constrains on their social participation and the inability of the impairment to hold them down. To them their participation in mainstream social activities is a sign of their liberation. The liberation also means that they have overcome some of the constraining effect of the stigma attached to their disabilities. For that reason, they see cause to embrace their impairments and show through their acceptance of same that they are empowered. The liberation, which to the participants leads to empowerment, can be seen in Jeanette‘s comment that ―I would want to say that my cleft palate is a blessing in disguise. It has made me a better person and it has made me a very strong person.‖ For Maame, she finds a lot of comfort in the fact that she has become an advocate for persons with disabilities. Her advocacy role, to her, allows her the space to challenge disability stigma in her own right. She says: I think at the moment, I‘m comfortable in that I have a voice and that my opinion is sought because I‘m a member of GFD. I‘m talking of (disability NGO). I‘m a member of (disability organisation). I can do a letter to 264 University of Ghana http://ugspace.ug.edu.gh parliament anytime. Whether they will act is another thing but at the moment, I don‘t think people will shut any door because I have a disability or anybody I want to talk to will say oh no. I think I have access to people. If I want to see them I can get to see them. Jeanette also shows another sign of her liberation and empowerment by revealing a strategy that allows her to ignore the constraints of her disability stigma. She states that: It still affects my communication with people. I don‘t care about it but there is a communication barrier so now, one of the techniques I‘ve employed is to repeat myself a lot. Anyone who knows me knows that I am very repetitive when talking. I do that because some people pretend to have heard me but they don‘t hear me. Even when I‘m teaching, I repeat myself a lot and ask for feedback. It also affects me because I have to deal with clients and patients, new patients every day and some of them cannot hear me. When they cannot hear me, I just call a colleague…please mention the price to her...she‘ll just say and I‘ll take the money and continue with it. Jeanette‘s repetitiveness, a response to her discredited stigma, gives her a sense of control over her interactions. She knows exactly what to do as her first option and what to do if that does not give her the desired outcome. If that does not bring the needed outcomes, she falls on her colleagues at work and continues with her work. The participants‘ ability to accept and embrace their disabilities affords them the opportunity to focus on what they do, their own strengths and the resources with which they confront the effects of the stigma they face. The willingness of these middle-class persons with disabilities to show through their actions that they are willing to accept and embrace their disability identities adds to their words to enable them communicate defiance in the midst of oppression. Their words and actions which communicate this acceptance corresponds with Snow and Anderson‘s (1987) elucidation of embracement as ―the verbal and expressive confirmation of one's acceptance of and attachment to the social identity associated with a 265 University of Ghana http://ugspace.ug.edu.gh general or specific role, a set of social relationships, or a particular ideology…Social and personal identities are congruent, such that the individual accepts the identities associated with his status‖ (p. 1354). Confrontation and Resistance: A number of the participants confront their abusers and the abusing situations as they seek to resist the stigmatising treatment that is meted out to them. Ability to confront people and stigmatising situations comes from how much power, influence or control that the person with disability has and what failure to resist that stigma would mean. Maame says that she thinks that she is ―a little opinionated to feel stigmatised and if I do I will express it and people will say oh I didn‘t mean this or that.‖ As a demonstration of her resolve not to accept being stigmatised, discriminated against and excluded, she adds that, ―I will scream and kick if I go somewhere and they don‘t have a ramp. I won‘t turn round and say I am being discriminated against. I will point it out to you that you should have a ramp.‖ Burris (2002) and Hale (2010) argue that the strength and influence that enables persons with disabilities to confront various forms of stigma often lead these persons into advocacy position and roles. Their argument resonates with nine participants of this study, seven of whom who have become advocates for the inclusion for persons with disabilities. These include Ezekiel, Maame, Jacob, Gabriel, Martha, Sam and Matthew. Their confrontational strategy is deployed within and beyond official circles as they seek to challenge the stereotypes of docility and passivity that is often associated with persons with disabilities. Akosua and Yakubu have also confronted people who have acted towards them in stigmatising ways albeit in their unofficial capacities as advocates of persons with disabilities. 266 University of Ghana http://ugspace.ug.edu.gh Ezekiel gave me a detailed account of how a specialised vehicle that had been donated by a philanthropist to the NGO he has founded was almost confiscated by some authorities under some very bizarre circumstances. The documents covering the vehicle were compromised and repossessing the vehicle involved several visits to highly placed government offices. At some point, Ezekiel and his colleagues threatened the officers with full scale public and media disclosure, at which point the vehicle was released to them. In commenting on his encounter with one of the officers who was initially reluctant in assisting them, Ezekiel stated that: The man whose office we went to has now seen different persons with disabilities, courage and boldness in depth. We were three and we went to the office to fight. It wasn‘t easy. These are some of the things our disability has turned us into. It has given us some boldness and courage to do things. The country has added some courage to us. In this country, if you are not strong, you cannot survive. It‘s like a jungle. Gabriel got a job with a disability advocacy organisation after he went there to confront the head of that organisation on what he believed was their misplaced focus. Gabriel told me that he was not looking for a job but he thought the organisation was not doing enough, for which reason he went there to challenge the head. Not long afterwards, he was offered a position at the organisation which he accepted. Jacob has not been a frontline disability advocate but he told me that he never lets go an opportunity to educate people who attempt to treat him dismally because of his visual impairment. He has accosted people in buses, at the roadside and in other places, as the opportunities to do so come by. Matthew has been involved in advocacy from his days in the secondary school. He participated in empowerment workshops and conferences, all of which built his capacity to take up frontline disability advocacy role. Like Maame, Matthew is now involved in advocacy at the national level. 267 University of Ghana http://ugspace.ug.edu.gh For all of these middle-class persons with disabilities, the power and influence, the boldness and courage with which they confront and resist the stigmatising treatments come from their social position. As indicated earlier, class privilege offers a lot of strength and various forms of capital to middle-class persons with disabilities (Hale, 2010). It is with that strength that they advocate not just for themselves, but also for all persons with disabilities. Deflection to Religion: The participants showed that they are able to accept their impairments through the adoption of religious rationalisation of their social situation. Through their religious faith, nine out the 16 participants show a desire to ignore the challenges that the stigmatising identity elicits and rather focus on what they perceive as their divine circumstance. Even for the seven participants whose responses do not suggest an active reliance on religion and the utilisation of same to deal with the stigma they face, there is a subtle indication that religion plays an important role in their lives, as they pursue social inclusion and reduction of disability stigma and discrimination. Of course, religion is a personal experience that impacts on social identities and interaction and for these middle-class persons with disabilities, their devotion to the supernatural is a means of deflecting whatever trouble they have with their disability and stigma away from themselves. Agnes makes the point that: I am very happy that I know Jesus Christ because if I had known Him earlier, I wouldn‘t have gone through all the troubles I told you about. I know that if this life doesn‘t go down well with me, I still have a good future and reward in Heaven. I used to cry so much but since I got to know of Christ I have stopped all that. Agnes refer to ill-advised choices she made earlier in her life as a result of the stigma of her disability, at a point she ―did not know Christ.‖ To her, had she been devout earlier, she would 268 University of Ghana http://ugspace.ug.edu.gh have made better choices. She is certain that her faith would have limited the effects of her stigma which compelled her to make the bad choices in her youth. Kofi makes a similar point about choices he made earlier in his life as well, acknowledging the fact that frustrations emanating from how his family, friends and even strangers treated him made him feel rejected and dejected, thereby exposing him to acts of deviance under peer pressure as he pursued social acceptance. In responding to the question of who or what has made the biggest impact in his life, Kofi recognised the role of his superior at work, but he also recognised the role that his turn to religion has had on his life. He told me how ―he did not love himself‖ until he took his faith and church serious. He stated that: Church will be first and then the man. Church is first because of God. When you get an encounter with God, it‘s in the bible, everything changes. I was drinking because I didn‘t know myself, maybe I was smoking because I wanted to be like people. I didn‘t know myself. I was going to the club because I didn‘t know myself but after my encounter with God, that is when I realised I have some strength, that is why I did away with those things and I started loving myself back. Since then, all my plans have fallen in their rightful place and now I‘m here. So God and the man… The difference that the participants believe God makes in their lives is seen again when Jeanette believes that her speech impairment is a sign that she is special and that she was meant to be different, and by extension, a better person. By her being created different, she believes God has given her enough resources to handle her stigma and the challenge it presents to her. She believes she has handled her impairment and its stigma well. She says that because of her faith when she states that: I believe in God and I trust in God and I have relied on God so much so there is the God factor in my life. I believe in God and I believe in divine 269 University of Ghana http://ugspace.ug.edu.gh orchestrations and interventions and I believe that God made me special and there is a special purpose for me so God will see me through. Some of the participants believe that their lives are made comfortable by resources such as technological devices and the social support from family and some close associates but even then, that does not prevent them from attributing their social attainment and seeming contentment to God. Jacob says that: Life is good with Christ and having the right resources such as having at least enough to take care of the things you need, and also having as a visually impaired person the right technology to do whatever you want to do, and being able to move around easily. Akosua and Daniel are reluctant in addressing their minds to what their lives would have been had they not have their respective impairments. I asked Daniel if he sometimes feel that he would have been in a better position than he finds himself. His response was that: I would have died yesterday. It could have also been a possibility. So if I had my right arm…those ‗ifs‘ that will make you feel inconvenient. I don‘t think about them. Once somebody got up and was like ―arh so you I always see you bubbly and always excited doing what you do, don‘t you sometimes sit down and regret that you don‘t have your arm?‖ I‘m thankful to God that I even have life in the first place. Daniel‘s response is a sign of a tacit acceptance and contentment with the life he has, which to him is enough as an opportunity to prove his abilities. He appears disinterested in imagining what his life would have been without his impairment but is prepared to show how ‗normal‘ he is with his ‗bubbly‘ demeanour. Akosua does not want to attribute her current social class position solely to her own effort and refers to ‗grace‘ and ‗mercy‘ from God. She says that: I don‘t want to say that I am too good to be enjoying the things that I am enjoying. It is favour. It is mercy, whichever way. That‘s about it. I‘m not sure, what I can say is maybe had it not be for the disability, I would have been 270 University of Ghana http://ugspace.ug.edu.gh worse off spiritually. I have a friend…Just last week at church, bible studies, I was telling them that when we talk about the grace of God, I need not look far to see the grace of God. I look at myself, because but for His grace I wouldn‘t have been able to do a lot of things. There are people like me on the streets begging. So why am I where I am? It is grace. Akosua‘s statement, much like the statements of the other participants referred to, show that the participants find a lot of comfort and security in their faith, with the belief and assurances that they find in their faith. The assurances mostly come from the comparison they make about their social position and the situation of people who have coterminous disabilities. The participants believe that they could easily have ended up like persons with disabilities in the lower social classes. The participants are very much aware of the challenge that persons with disabilities face and see their own emancipation not as the usual, but rather the exceptional, especially when you consider the responses of Akosua, Kofi and Daniel. One thing that remains obvious in all the strategies is that there is an acknowledgement of the impairment as a disability when it is being discussed nominally. However, middle-class persons with disabilities are able to utilise their strength and competence to diminish the effects of the disability by their ability to downplay the effect of the disability, even when they acknowledge that it used to be a problem for them, similar to the argument by Lyons et al (2016). What this means is that by managing their identities, middle-class persons with disabilities reconstruct the realities of their disability experiences to their advantage, though it may come with some collateral damage to their overall social participation. 271 University of Ghana http://ugspace.ug.edu.gh Social Class as the Determinant The denial of disability by persons with disabilities themselves, as well as people they are in contact with, points to the generic conceptualisation of disability as the trouble of marginalised, excluded and oppressed people who are on the fringes of society. In terms of social status, ‗disabled people‘ are those people with impairments who are beggars, poor, have no or little formal education or have lower social class positions. For the participants of this study, their refusal as well as the refusal of their associates to acknowledge their ‗disability‘ in absolute terms is a direct outcome of this perception, albeit flawed, that disability inhibits one‘s abilities and renders an individual poverty stricken and shoved onto the margins of society. What is quite obvious is that high social class status offers redemption from the stigma that persons with disabilities are tagged with. This occurs because such persons with disabilities are emancipated and not seen as a nuisance in the society since they are economically independent, socially integrated and politically involved in mainstream society. Their superior abilities and achievements are often emphasised, and not their disabilities. Invariably, it is not just the impairment that ‗disables‘ persons with disabilities but also, the lower social class position and the ensuing poverty that exposes a person with disability to the stigma of disability. Persons with disabilities, being aware of this, use their social class position to distance themselves from the disability identity, even if the distancing serves cognitive purposes only. Being middle-class and being a person with disability mean that the middle-class status can become the master status under the right circumstance. This is, however, not the case for persons with disabilities who are in the lower social classes. For the latter, disability becomes their master status as a result of the complex interaction between social class and 272 University of Ghana http://ugspace.ug.edu.gh impairments. For the participants in this study, these identity management strategies allow them to ‗move in and out‘ of the disability identity (Riach & Lorreto, 2009, p. 109). What this means, according to Riach and Loretto (2009), is that disability can be compartmentalised such that it does not become a fixed classification of people‘s social identities. Summary In this chapter, I have presented how middle-class persons with disabilities rationalise their disabilities as way of responding to and challenging the stigma that their disabilities elicit in their homes, schools, places of work as well as religious centres. A fundamental aspect of how the participants construct their identities is their social class position which gives them leverage for them to reject the disability label and its negative social connotations. Middle- class persons with disabilities utilise these techniques in response to the psycho-emotional dimension of disability. Without these techniques, internalised oppression would occur in its most extreme manifestations and its effect on the social lives of persons with disabilities in general and the middle-class among them in particular would not be very good for the individuals, their families and society. When disability experiences are being considered, the emotional responses to disability stigma are as important as the social acts of exclusion and marginalisation. This is because they contribute to the different ways in which disability and stigma are experienced by persons with disabilities, how persons with disabilities may see themselves as disabled or otherwise and how they navigate around these disabling identities. The decisions that are made in these identity management strategies are made on the basis of these emotional and intellectual responses and they affect relationships that may or may not be formed as a result of the stigma. By their challenge of internalised oppression, middle-class persons with disabilities reject and challenge the stereotypes and myths about disability. By 273 University of Ghana http://ugspace.ug.edu.gh these strategies, they opt not to remain as victims but rather, they create parallel social identities which according to Baldridge and Kulkarni (2017) are empowering and liberating. With this, they may be able to defy social restrictions occasioned by disability and manage their social contacts to their own benefit. Within all of these strategies that middle-class persons with disabilities utilise in managing their identities, their agency makes one thing obvious, and that is the fact that they give meaning to the popular emancipatory phrase – the personal is political. 274 University of Ghana http://ugspace.ug.edu.gh CHAPTER NINE SUMMARY, CONCLUSION AND RECOMMENDATIONS Introduction The stigma of disability is basis for persons with disabilities‘ marginalisation, discrimination, and exclusion from mainstream social and economic activities. Several legal and policy interventions intended to correct this oppression against persons with disabilities experience have been introduced but the stigmatisation of disability continues to persist. The stigmatising experiences that persons with disabilities encounter in their lives have been documented quite extensively. However, the literature on persons with disabilities and the stigma that they experience tends to focus a lot more on those who are marginalised and excluded, that is, those whose lower social class positions make them vulnerable to the harsh consequences of stigmatisation. In addition, the salience of other individual characters such as types of disability and time of acquisition of disability, together with social identities such as social class position and religion are often de-emphasised. These notwithstanding, it has been established that different individual characteristics and social identities often lead to different outcomes within social interaction. For these reasons, persons with disabilities are often aggregated as a suffering mass of people who require particularly economic and other social assistance to enable them contend with the stigma of disability and its consequences. In this study, therefore, I sought to examine how middle-class persons with disabilities experience the stigma of disability, bearing in mind that different individual characteristics and social identities lead to different outcomes within social interactions. In doing so, the research questions I sought to answer in this study included: 275 University of Ghana http://ugspace.ug.edu.gh a. How do middle-class persons with disabilities understand and explain their stigmatising experiences? b. What are the restrictions on activities and social roles of middle-class persons with disabilities in the home, work, school and religious spaces? c. How do middle-class persons with disabilities manage their personal and social identities against stigma? In terms of methodology, I adopted the Hermeneutic Phenomenology research design. I conducted in-depth interviews with 16 middle-class persons with disabilities made up of 11 men and 5 women. Four of them were physically challenged, three had hearing impairment, two were visually impaired, one had a speech defect and two had had amputations. There was one kyphotic person and one achondrosplastic person. One had partial visual impairment and was also physically challenged due to multiple sclerosis. Another had partial visual impairment and an amputation. Some of the participants acquired their impairments in their childhood and have lived with it since. Others acquired it in their adulthood. I analysed data from the interviews using the approach known as Interpretative Phenomenological Analysis (Pietkiewicz & Smith, 2014; Smith, 2011; Smith & Osborn, 2015). Key Research Findings I found in this study that social class positions and disabilities intersect to create different experiences for persons with disabilities. For these middle-class persons with disabilities, they are often stigmatised by virtue of their disabilities in so far as they are unable to negotiate 276 University of Ghana http://ugspace.ug.edu.gh their identities with their middle-class position. The findings of this study have been summarised into four sections, as a reflection of the research questions. I. Intersection of Disability and Middle-Class Position Middle-class persons with disabilities are not an aggregate. There are variations due to family background, time of acquisition of the disabilities and even the types of disabilities that one may have. In this study, I identified four categories of middle-class persons with disabilities. These are (a). Middle-class and Childhood Acquisition (M/CA); (b). Middle-class and Adulthood Acquisition (M/AA); (c). Lower-class and Family support (L/FS); and (d). Lower- class and lack of family support (L/LFS). The different categories are a pointer to the fact that there are several variables that combine to create one‘s experience of disability stigma, similar to the positions of Foster (2017) and Mpofu and Harley (2006). It becomes obvious then, that two people who may have acquired the same impairment may experience disability and its stigma differently due to possible variations in time of acquisition, the social space they may be in and the people with whom they interact. Social class positions feature prominently in the social process that produces a particular person‘s experience of disability stigma (Riessman, 2000). The stigma of disability that middle-class persons with disabilities experience is different from the experiences of persons with disabilities from the lower social classes as known from literature (Baffoe, 2013; Kassah et al, 2014; Naami, 2015; Soldatic & Meekosha, 2012). The middle-class position offers the privilege and impetus with which middle-class persons with disabilities challenge the stigma they encounter. That is not to say that middle-class status cause disability stigma to vanish but rather, it influences situational factors such as the 277 University of Ghana http://ugspace.ug.edu.gh particular social space one is in, the kind of people with whom one is interacting and the type of disability that one has, to create new forms of stigma, some of which are unique to middle- class persons with disabilities. The middle-class position allows middle-class persons with disabilities to enhance their functional capacities (Drake, 1999; Hale, 2010; Vernon, 1999), as they challenge the stereotypes of disability, bearing in mind that it is these stereotypes that influence the existence and replication of the stigma of disability. Even though they are all middle-class now, it is obvious that the capacities of those who acquired their disabilities as children when they were born into lower social class families that did not support them (L/LFS), appears to be lower than the capacities of the middle-class persons from the other three categories. The ability of the persons in the other three categories to confront stigmatising situations is thus higher. This brings the role of the situational factors, as stated already, into focus. The resources available to the M/CA, M/AA and the L/FS participants constitute the capital available to them with which they deal with the effects of stigma. Another important finding in this study is the role that families of persons play in their lives, particularly those who acquire their disabilities as children, consistent with Ablon‘s (2002) position on family support. When compared, the M/CA participants and the L/FS participants possess resources that are not available to the L/LFS participants, though they all acquired their disabilities as children. The differing factor is the family support that the L/LFS lacked, for which reason they have become what I term ―latecomer middle-class.‖ Carnevale (2007) describes this family support as a ‗protective capsule‘ as it allowed these persons to take up opportunities and resources that had been made available to them by their families. Had the 278 University of Ghana http://ugspace.ug.edu.gh L/LFS had the kind of support that the others had, it is likely they would have earned similar resources available to the M/CA and L/FS persons with disabilities. In all of this, what is obvious is that given the appropriate support, persons with disabilities, regardless of the social class position of the families into which they are born, can become middle-class, and also earn the leverage with which they would confront disability stigma. II. Ascriptions of Incompetence – Prevalence of Disability Stereotypes The prevalence of the stereotypes against persons with disabilities exposes middle-class persons to various forms of stigma, as a number of the people who interact with them fail to disaggregate persons with disabilities with their salient personal characteristics and social identities. For this reason, middle-class persons with disabilities are assumed also to be incapable of physical exertion for which reason they are stigmatised and discriminated against in the various social spaces. As argued by Coleman (2006), the stigma of disability neutralises the positive quality that any individual may have and that is what happens in the case of middle-class persons with disabilities. Their abilities are ignored and their impairments are brought into stern focus even when they continue to show through their accomplishment that they are capable of undertaking efforts that require very complex skills (Hughes & Avoke, 2010). Due to the assumption that persons with disabilities are physically incapable and weak, they are asked to stay away from social gatherings, prohibited from certain social spaces because they are thought to beggars or unworthy to be in that space, they are denied opportunities to work because they are assumed to be unproductive, similar to the argument of Jammaers et al (2016). 279 University of Ghana http://ugspace.ug.edu.gh Sometimes, middle-class persons with disabilities are assumed to be financially incompetent. They are assumed to be beggars even when they have not asked for alms. People offer money to some middle-class persons with disabilities on sight, assuming that they have positioned themselves to seek economic assistance. Other times, they are asked not to pay for services even when they are very capable of paying. Some families are also reluctant in agreeing to persons with disabilities marrying their kin because of the belief that persons with disabilities are not economically independent or cannot be financially viable. These manifest the stereotype of poverty that disabilities carry and how middle-class persons with disabilities suffer from it. At yet other times, middle-class persons with disabilities are assumed to be incapable of handling the intellectual demands of social interaction leading to what Cahill and Eggleston (1995) describes as non-person treatment. This is when companions and guides of persons with disabilities are spoken to even when the persons with disabilities are present and willing to engage in the interaction. This ascription of intellectual incompetence means that middle- class persons with disabilities are sometimes denied of their right to privacy. Middle-class persons with disabilities‘ achievements such as academic qualifications are sometimes doubted as they are questioned whether they earned them on merit. It is as if it is out of this world for persons with disabilities to succeed. Sometime, persons with disabilities are stripped off their sexualities and for that, signs that middle-class persons are engaged in intimate relationship often raise eyebrows. Women with disabilities are particularly scrutinised when they become pregnant and the successful delivery 280 University of Ghana http://ugspace.ug.edu.gh of their babies is seen as a near miracle, even though child bearing is considered mundane among non-disabled women. Middle-class persons with disabilities are shown sympathy that often borders on pity (Hehir, 2002; Tobias & Mukhopadhyay, 2017) and a number of them do not appreciate it. Some, however, do not consider the show of sympathy to be offensive and so they welcome it. The sympathy is interpreted by the persons with disabilities as a subtle way through which people emphasise their disabilities to the neglect of their abilities. For some middle-class persons with disabilities, the show of sympathy is a prelude to a call on them to take things easy and not stress themselves. Taking things easy and not stressing themselves is also a subtle call on persons with disabilities to stay away from the hustle and bustle of social interaction and that is what middle-class persons with disabilities do not appreciate. These ascriptions of incompetence expose middle-class persons with disabilities to denigration and rejection. Ultimately, middle-class persons with disabilities find themselves at a disadvantaged position as they struggle to emphasise their middle-class identities as against their disability identities. III. Simultaneous Institutional Acceptance and Rejection – Contradictions of Stigma Some institutions within the social spaces of middle-class persons with disabilities are sites for the manifestation of stigma. Middle-class persons with disabilities are not only stigmatised by individuals. They are stigmatised against by some of the institutions that they interact with. These institutions include schools, churches, service providers and various places of work. Though these institutions are not set up deliberately to stigmatise persons with disabilities, some of the social relations that exist within the institutions subtly stigmatise persons with disabilities. Link and Phelan (2001) describe this as structural discrimination, explained as 281 University of Ghana http://ugspace.ug.edu.gh rules and behaviours within the institution that serve to disadvantage persons with disabilities, thereby creating a ‗disabling environment‘ (Hahn, 1983 cited by Link & Phelan, 2001). Middle-class persons with disabilities who aspire to attain education are sometimes constrained by the limited choice of courses and subject that are made available to them, particularly when those courses or subjects are available to non-disabled people in the same school or other coterminous institutions. This point has also been made by Hehir (2002). In some situations, persons who desire to pursue certain careers and academic disciplines are denigrated and made to feel out of place. For this reason, a number of middle-class persons with disabilities are steered away from their preferred academic and career paths and that affects their sense of worth negatively. The separation and placement of persons with disabilities into special schools also increase marginalisation and limits the social capital. They start and complete their education with marginalised people who are just like them. That limits their social contact to the fraternity of persons with disabilities and that is not empowering. This decrement of social capital leads to the entrenchment of the stereotypes and emphasis on social difference and as has been indicated by Schur et al (2003). In some of the institutions, there is a lack of administrative support for persons with disabilities, non-availability of appropriate facilities as well as limited social support and inadequate technical services. Some of the institutions are aware that persons with disabilities are with them but the institutions appear to be are unresponsive to their needs or concerns. There is unwillingness on the part of the institutional managers to meet the needs of persons with disabilities. In some other situations, it is the lack of awareness about disability that 282 University of Ghana http://ugspace.ug.edu.gh causes this. In some schools, persons with disabilities have to acquire equipment on their own since some schools are poorly equipped, meaning that those who are not affluent miss out. These constraints and restrictions have also been identified by Athanasou (2014) and Sevak et al (2015). Within some churches, persons with disabilities are excluded from the performance of special duties. Though some churches are inclusive, some do not embrace persons with disabilities. Some churches do not have interpreters for hearing impaired members. In other places, persons with disabilities are made to sit in places where they are expected not to be a nuisance to other members of the church. Some employers are prejudiced against persons with disabilities as has been suggested also by Kulkarni and Lengnick-Hall (2014) and for such people, persons with disabilities are only suitable for the performance of minimal tasks at work. In some places of work, persons with disabilities are not given the opportunities that their colleagues are given. Promotion at work is one thing that never comes easy to middle-class persons with disabilities. Some institutions do not make provision for physical access to persons with disabilities. This occurs in schools, churches, places of work and some service providers‘ outlets. The lack of physical access is exclusionary and has been described by Imrie (1996) as ‗design apartheid‘. The stereotypes that disabilities carry follow some middle-class persons into a lot of their social spaces. This leads to limited access to mainstream social arena and rejection. This is the case when some colleagues and even kinsmen shun the company of persons with disabilities and when they are denied the right to some social services even when the social services are guaranteed by law. 283 University of Ghana http://ugspace.ug.edu.gh IV. Middle-class Persons with Disabilities’ Identity Management Approaches Middle-class persons with disabilities engage in daily management of their identities as they challenge the stigma of disability. This is necessary in order that they will be able to resist being always made to feel and look different and also to overcome internalised oppression. Internalised oppression is the frustration, feelings of anger and hurt, the sense of unattractiveness and worthlessness that they sometimes have as a result of the stigma of disability, in line with the argument of Reeve (2002) and Thomas (2006). The management of the disability identity is done by the rationalisation of the impairment and the construction of what constitutes disability. Middle-class persons with disabilities acknowledge the fact that they have acquired impairments but they do not accept that it ―disables‖ them. This is because their social class position confers on them privileges that are available to non-disabled middle-class persons and privileges that may not even be available to some non-disabled people. On the basis of these meaning, they respond to their disabilities and the stigma by using their social class position as basis to distance themselves from the impairments in a form of denial. This affirms the argument by Reeve (2004) that the acquisition of impairment is not automatically a reason enough for the person who has the impairment to identify and accept the disability. Some do not want to describe themselves using disability monikers and they do not describe their impairments as disabilities. They prefer to use terms such as ‗challenge‘ and ‗hurdle‘. Their ability to deny the disability stems from the fact that they are economically and socially independent, their independence becoming basis for their denial. Also, when they compare themselves with non-disabled people, they see that some aspects of their life chances are better than that of some non-disabled people. For this reason, middle-class persons with 284 University of Ghana http://ugspace.ug.edu.gh disabilities are able to supress the stigma of disability and its effects on them by their ability to construct better social identities over their stigmatised personal identities, as also posited by Read et al (2015). Some people with whom middle-class persons with disabilities interact with also deny the disabilities of middle-class persons with disabilities. The assumptions that make them do that is informed by the stereotypes of persons with disabilities being destitute and overly dependent on others. Consequently, some middle-class persons with disabilities who admit to being persons with disabilities are chided by their kin, friends and associates for doing so. The reason is that, the middle-class people do not look like ―them‖, where ―them‖ refers to those seen on the streets as extremely vulnerable persons with disabilities. Some middle-class persons with disabilities, being aware that some people do not regard them in the same vein as the lower class persons with disabilities, work hard to entrench that belief by not conforming to the behaviour often seen from persons with disabilities. Conversely, some other middle-class persons with disabilities consider the denial by others as offensive. This is because they see that as amounting to the denial of a cardinal part of their identity. The denial by others shows how middle-class persons with disabilities are subjected to the scrutiny and curiosity of people, and that is also stigmatising. The central point, around which all the denials and the relating discourses revolve, is the middle-class position. Middle-class persons with disabilities sometimes avoid social situations when they anticipate that they will be stigmatised in that space. They are therefore selective in their contacts and social participation. Also, some of them tend to accept their disability identities and embrace same as they seek to communicate that they are able to overlook it and focus on their 285 University of Ghana http://ugspace.ug.edu.gh strengths. By virtue of their ability to construct strength over the weakness created by the stigma, middle-class persons with disabilities are able to indulge in all social activities that they want, if they so choose and for that, they consider themselves to be liberated and empowered. By extension, middle-class persons with disabilities find comfort in their voices by their ability to confront the stigmatising situations and people who attempt to denigrate them. Being able to construct strength over the stigma has led several middle-class persons into frontline advocacy roles, both at organisational and national level, consistent with Hale‘s (2010) argument that strength often influences persons with disabilities disability advocacy. The courage and confidence that is used in the resistance, confrontation and advocacy all come from the leverage provided by the middle-class position. In some other situations, middle-class persons with disabilities turn to religion as a source of strength and liberation. The reliance on their faiths and religion allows them to be content with themselves and also to remain hopeful for better opportunities. By trusting in God, they believe that they are complete and are not less human just because they have impairments. As argued by Lyons et al (2016), the superior class position allows them to construct strengths in ways that reduce effects of their disabilities, thereby allowing them to ‗move in and out‘ of their disability identity, as posited by Riach and Lorreto (2009). Conclusion From this study, it is obvious that the body is a site for the contestation of different constructions of personal and social identities. In this case, the identity being discussed is that 286 University of Ghana http://ugspace.ug.edu.gh of persons with disabilities. The disability identity that one may have is constructed from a complex social process that draws in several situational factors, either to the benefit of the person with disability or to his or her disadvantage. Under the heavy influence of situational and relational factors, the nuances of the relational processes that give rise to these identities and the experiences that these identities lead to, have a complex influence on how middle- class persons with disabilities experience the stigma of disability. Middle-class persons with disabilities have a social class position that allows them to construct positive personal and social identities over their stigmatised disability identities. Other people in society also validate their construction of positive identities over stigmatised identities. On the basis of these constructions by middle-class persons with disabilities, it is evident that class is a factor in the conceptualisation of what constitutes disability, in both individual rationalisation and social conceptualisation. Another very important thing to note is that there are hierarchies within the middle-class and these hierarchies are also important in the experience of class-disability intersection experience. These hierarchies add to the situational factors to define the types of resources that middle-class persons with disabilities may harness to confront the stigma they face. What this shows is that class cannot be detached from the disability experience even though there is a limit to which it is effective as a buffer against the disability stigma. They do things normally but people see them differently no matter how hard they try. Some people interpret their disability to be an inability and so invalidate all their accomplishments. The complexities of middle-class experiences of disability can be described as being inside by virtue of your social class position, and yet being seen as an outsider because of the disability. 287 University of Ghana http://ugspace.ug.edu.gh Middle-class persons with disabilities therefore struggle to get unconditional acceptance and admission into mainstream social spaces. Their acceptance is often by virtue of their social class position and what it represents over their disability identities at a particular time. It is unlikely that they would receive the same level of acceptance had they not been middle-class. Invariably, their compromised identities are overlooked only in so far they are able to push their class identity forward as the master status within an interactional process. Sometime, this is successful and the stigma of disability is subdued but in other situations, the disability identity overwhelms the social class position and compromises the social identity of middle- class persons with disabilities. The middle-class status means that they have gone ahead of several people in society but in so many ways, society has not made provision for them to be fully integrated and they are faced with a critical choice, whether to mark time and wait for society to catch up or continue to go ahead of society and encounter more stigma particularly for those who are breaking new ground. All these notwithstanding, the negotiated identities of middle-class persons with disabilities, with all the complexities that go into its construction, and the attempts by middle- class persons with disabilities to contest stigma can be aligned to the emancipatory phrase - the personal is political. A very significant outcome of this study lies in the fact that there are multiple realities of disability stigma experiences. This conclusion is reached through the convergence of Goffman‘s conceptualisation of stigma (Goffman, 1963), Link and Phelan‘s (2001) extension of the conceptualisation stigma, the Social relational model of disability, hermeneutic phenomenology and the IPA, all of which recognise the fact that the experience of disability 288 University of Ghana http://ugspace.ug.edu.gh and the stigma of disability are relative, situational, negotiated, contextual and unique to each individual across different times and places. What is stigmatised in one context may not be stigmatised in another. Recommendations for Policy Realising that there are class hierarchies within persons with disabilities, legal and policy interventions do not have to be one-dimensional towards economic emancipation. Some are economically emancipated and need other forms of social support. The Disability Act needs to be amended to reflect best standards and enforced properly. The punitive measures against acts of discrimination and stigmatisation should be increased to make it unattractive for people to use them against persons with disabilities. Though not enough, it will help make the abilities of persons with disabilities visible and the incompetence that is often ascribed to them will diminish over time. Disability studies should be included in the educational curriculum at all levels and also among health professionals to help people develop the awareness of who persons with disabilities are, as one of the largest oppressed groups of people. This can be a way of making people more aware and sensitive to their needs and place in society. Institutions such as schools, churches, mosques, government institutions and agencies, employers and organisations should be encouraged to embrace diversity and make provision for the inclusion of persons with disabilities. This call should not just be by admonishing, but rather, by a conscious effort aimed at integrating persons with disabilities into all mainstream social activities. 289 University of Ghana http://ugspace.ug.edu.gh Future Research I believe that just as class has been identified as a factor that intersects with disability to create hierarchies and varying experiences, other personal characteristics and social identities that may also give rise to some forms of experiences should be studied in order that a more comprehensive understanding of disability will be formed. Some of the intersecting variables that can be studied, in this light, include religion, age, ethnicity, spatial influences and family support. It is also necessary that the social systems of organisations and institutions within which persons with disabilities are found are studied. That way, the institutional arrangements that support and or oppose the integration of persons with disabilities will be known. 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The Milbank Quarterly, 83(4), 1-27. doi: 10.1111/j.1468-0009.2005.00436.x 308 University of Ghana http://ugspace.ug.edu.gh APPENDIX I Interview Guide Questions will be screened to assess applicability to participants, particularly those whose disabilities did not occur in their childhood but later in their lives. Section A: Demographic Information i. Age ........................ ii. Religion ..................... iii. Marital Status.......................... iv. Number of children ..................... v. Current Occupation........................................... vi. Previous Occupations.................................................................................................. vii. Current source(s) of income....................................................................................... viii. Highest level of education attained.......................................................................... ix. Type of Disability........................................................................................................ x. Age at onset of disability ............................ xi. Place of Birth................................... Section B: Background and Family Relations 1. Where did you live? 2. Who did you live with and what did they do? 3. What were your daily activities and responsibilities? 4. What were your likes and dislikes? 5. Which places did you spend time in and why? 6. Which people were you most/least likely to associate with and why? 7. How did you move around? (for participants whose disabilities occurred in their childhood) 8. What was your relationship like with your family? Parents? Siblings? 9. What was life like growing up? (a child, a teen and an adult) 10. Was this different from the life of your siblings? 11. What did you like most/least as a child, teenager and an adult? 12. What were your dreams and aspirations as a child and a teenager? 13. What were your fears when you were a child and a teenager? 14. Is there any specific event which influenced/changed (still influences) your life as you grew up? 309 University of Ghana http://ugspace.ug.edu.gh 15. Have you had romantic relationships in the past? (if YES, Details) 16. Do you have a partner? (for the unmarried participants) 17. How did you meet your partner? 18. What do you see as the good and bad parts of your relationships? 19. Is there anything you want to change about your relationships? Section C: General Perception and experience of disability 20. What do you like most/least in your life at the moment? 21. What is disability? 22. What does the term disability mean to you? 23. What characterises an individual as a person with disability? 24. Tell me a little bit about your disability. (esp. cause) 25. What does it mean to you to be disabled? 26. How do you compare yourself to other people in your age or gender group? 27. What do you think about your disability? 28. How does your disability affect your everyday life? 29. How do traditional beliefs people have on disability influence how people with disability are handled in the society? 30. How do you see exploitation, discrimination and marginalisation against people with disability now? 31. How do you move around (transportation) and access buildings? 32. Do you feel deprived of the right to family life, or right to participate in social, political or recreational activities? 33. Are there any advantages and disadvantages of being disabled? 34. How do you respond to these advantages and disadvantages? 35. What are the most difficult things for you to do because of your disability? 36. What was life like growing up with a disability? (for participants whose disability occurred in their childhood) 37. How did that differ from life growing up without a disability? 38. Who are the most important people in your life? (Details) 39. How do other people with disability relate to you and how do you relate to them? 310 University of Ghana http://ugspace.ug.edu.gh 40. How do non-disabled people relate to you and how do you relate to them? 41. How do non-family members relate to you? Section D: Home 42. Whom do you live with currently? (Details) 43. How would you describe the relationships between you and your family members/people you are living with? 44. What responsibilities do you have at home? 45. Does your disability constrain you at home? 46. How do you move around at home? 47. What is the household‘s most important source of income? 48. What is your contribution to the household? (tangible and intangible) Section E: School 49. How important is education if you have a disability? 50. How do you evaluate the access to education for persons with disabilities in Ghana? 51. What kind of education and training do you think persons with disabilities need? 52. When did you start school? Where? For how long? 53. What did you like/dislike about school? 54. What life was like for you to be in school with a disability? 55. Are there any other skills and knowledge you received? (If YES, what were they and how has your life been changed by that?) 56. Do (Did) you use any aids and resources in school? (If yes, how do (did) you obtain these aids and resources?) 57. How did your colleagues and teachers relate to you? 58. How has your disability affect your education attainment in any way? (applicable to participants whose disability occurred before or during their schooling years) Section F: Work 59. How do you evaluate the employment opportunities for people with disabilities in Ghana? 311 University of Ghana http://ugspace.ug.edu.gh 60. What do you do for a living? 61. How long do you work and how much do you earn? 62. Are your earnings enough to take of your needs (and your dependents)? 63. What are your main work-related responsibilities and activities (paid/unpaid)? 64. How has your disability affected your employment status? 65. How does your current job compare with previous jobs you have had? (if any) 66. Is there anything you want to see changed with regard to jobs and your employment? 67. Do you find that your disability limits/enhances your abilities in anyway? 68. How do your employers, colleagues and clients/customers relate to you? 69. Is there anything you wish to change about your relations with employers, colleagues, clients and customers? Section G: Social Network, Social Support & Community Relations 70. Are you involved in decision-making at home, work, school and social organization? 71. How would you describe the family/community/government support people with disabilities (including you) receive? 72. Do you have support (social, financial, emotional) from your family, friends, employers and colleagues? 73. Do you belong to any group? (If YES, What do these groups do and how long have you been a member?) 74. Do these groups consider your needs? 75. What are your roles in the group? (Details of activities and positions held) 76. Does your disability limit/enhance your participation in the group‘s activities in anyway? 77. How would you describe your level of socio-political participation? 78. What community resources and social services do you have access to (including government interventions)? Section H: Social and physical places of inclusion and exclusion 79. Do you have access to public places (including buildings) where you wish to go? 312 University of Ghana http://ugspace.ug.edu.gh 80. How do you find public services rendered to you? 81. How would you describe your experiences with the healthcare system? 82. Is there anything you want to change? (If YES What and Why?) 83. Has transportation prevented you from doing something you wanted to do? 84. In what situations and places do you feel most comfortable/ powerful? 85. In what situations and places do you feel uncomfortable/ powerless? Section I: Needs, future aspirations, and fears 86. How would you describe your feelings about life in general, your family and society? 87. What are your future plans and ambitions? 88. Do you think your disability has denied you of opportunities you would have gotten? 89. Are your dreams/future aspirations and fears the same as when you were a child? 90. Do you need anything in particular to make your dreams and aspirations come true? 91. What are your biggest concerns for the future? 92. What does your disability mean to your future? Section J: Disability Act 93. How familiar are you with the provisions in the Disability act? 94. What is the level of commitment of government, civil society, media and institutions to the disability issue compared to other social issues? 95. Do you see any flaws in the implementation of the Disability Act? (If YES, what would you want to change?) 96. How in your estimation does disability compare to other issues in the country like road accidents, maternal mortality, the economic situation, corruption, etc.? 313 University of Ghana http://ugspace.ug.edu.gh APPENDIX II ETHICAL CLEARANCE 314