Constructing Disability Identities in the Gambia: the Role of Disability Ngos, Societal

Home , Boot (medical), Disability and poverty, The Gambia (1965–1970), University of the Gambia

Constructing Disability Identities in The Gambia: The Role of Disability NGOs, Societal

Norms, and Lived Experiences in Shaping the Identities of Differently Abled Gambians

A dissertation presented to

the faculty of

the Scripps College of Communication of Ohio University

In partial fulfillment

of the requirements for the degree

Doctor of Philosophy

Marion G. Mendy

August 2020

This dissertation titled

Constructing Disability Identities in The Gambia: The Role of Disability NGOs, Societal

Norms, and Lived Experiences in Shaping the Identities of Differently Abled Gambians

MARION G. MENDY

has been approved for

the School of Communication Studies

and the Scripps College of Communication by

John W. Smith

Professor of Communication Studies

Scott Titsworth

Dean, Scripps College of Communication

Abstract

MENDY, MARION G., Ph.D., August 2020, Communication Studies

Constructing Disability Identities in The Gambia: The Role of Disability NGOs, Societal

Norms, and Lived Experiences in Shaping the Identities of Differently Abled Gambians

Director of Dissertation: John W. Smith

This qualitative study highlights rich and compelling insights into how

individuals living with disability identities are treated negatively as a result of their

physical differences. To understand what it means to be disabled in The Gambia, this

study obtained different viewpoints of how individuals make sense of their disability

identities by examining the perceptions of individuals living with disabilities, the

family members of persons with disabilities, and employees of a disability NGO

known as The Gambia Organization of the Visually Impaired (GOVI).

The results of the study suggest that people with disabilities in The Gambia can be differentiated into three main categories. These include (1) individuals who rely on the community’s goodwill for sustenance, and as a result of their dependency, feel profoundly devalued by society; (2) Folks with disabilities who are employed, self- reliant, and economically independent and therefore have the choice to defy and/or dispute the social structures that limit and discriminate against them; and (3) individuals who are assertive, embrace their disabilities, and portray themselves as resilient as a result of the positive support obtained from family members and people close to them.

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Dedication

To two exemplary women in my life whose hard work and extraordinary love has shaped

me to be the person I am today: Augusta Nicol- Mendy & Abigail Grant- Nicol.

To my precious and amazing family for their unconditional love: Assan Sarr,

Aji- Fatou Sarr, and Mamud Sarr.

Acknowledgments

With a grateful heart, I would like to sincerely thank my incredible Advisor, Dr.

JW. Smith, whose invaluable support, guidance and encouragement made it possible for me to complete my graduate studies and this dissertation. His academic advice, inspiration and patience made my graduate school journey truly edifying and unforgettable. I will forever be grateful that my path so meaningfully crossed with his. I would also like to express special thanks to my amazing dissertation committee: Dr.

Laura Black, Dr. Emmanuel Jean- Francois and Dr. Austin Babrow. These amazing professors have not only supported me through the years, their invaluable comments and feedback, I believe, has made me a better scholar.

Over the years, I also benefitted from the mentorship and guidance of Dr. Yea-

Wen Chen, who continues to inspire me. I would also like to thank Professors who have also helped me along my graduate school journey: Dr. Stephanie Tikkanen, Jessica Ford

Dr. Steve Howard, Diane Ciekawy, Dr. Edna E. Wangui, Dr. Kevin Hales, and Dr. Ibra

Sene of the College of Wooster and his amazing wife, Loubar Diouf, and Yaye Fatou

Sene, his daughter also deserves my thanks.

My deepest appreciation goes to all of my incredible and precious participants, who so willingly spared their valuable time to engage and talk with me. I am so grateful to them for being part of this journey. Their stories and experiences will forever be in my memory as I strive to meaningfully contribute to make a difference in their lives. I would also like to extend my thanks to the incredible management and staff of GOVI especially

the Executive director, Mr. Lamin Colley. Mr. Colley and his colleagues welcomed me warmly into their offices and shared crucial information with me.

Several others have contributed significantly to making this dissertation a success:

My sincere thanks to Rohey Sanyang, Binta S. Jaiteh, Sirra Danso and Isatou Jallow who helped me greatly during my research to conduct interviews. Rohey and Binta in particular helped me translate and transcribe the interview data we collected. I thank Mr.

Kebba Lowe of the Gambia Bureau of Statistics, Mr. Sainey Bah of the Law Faculty at the University of The Gambia for his kind assistance in this project and Mr. Charles D.

Gomez for his immense help. I would also like to acknowledge Mr. Madi Jobarteh

(formerly of TANGO), Abdoulie Jabang, Honorable National Assembly Member for The

Gambia, Ndey Yassin Secka, the African Studies Program at Ohio University especially

Dr. Ghirmai Negash and Bose Maposa. This dissertation could not have been completed without all of their support.

I want to express my appreciation and special thanks to the entire Gambian community at Ohio University for their support and motivation. I am especially grateful for their companionship over the years. I would also like to thank Shermineh Zanjani

Davari, for being an amazing and a true friend, and for making life at Ohio University fun and filled with laughter. I would also like to recognize Hanan Al-Shadadi, Katy Ross,

Shariq Sherwani, Elizabeth Jenkins, and Gang Luo for their friendship.

In addition, I also want to sincerely thank my parents for their relentless support and love, Augusta Nicol- Mendy, and Joseph Mendy and my lovely sister, Elizabeth

Mendy and her husband Anthony Mendy. I would like to acknowledge Dr. Donald vi

Wright and Doris Wright for welcoming me into their lives, and for including us (my husband, children and I) as part of their family. Their love for us is sincere. They will always have a special place in our hearts.

Finally, I want especially thank my family who supported and cheered me on this journey. I couldn’t have made it this far without the unwavering support and unconditional love of my husband Assan Sarr, and my adorable children Aji- Fatou Sarr and Mamud Sarr. They have tolerated me during difficult and happy times in my — to make me laugh, let me cry, and always encouraging me to follow my dreams. I am truly grateful for all their support in making this journey a success.

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Table of Contents

Page

Abstract ...... iii Dedication ...... iv Acknowledgments ...... v List of Figures ...... xi Chapter 1: Introduction ...... 1 The Beginning of Inquiry ...... 1 Statement of Problem and Contextual Background...... 7 Methodological and Theoretical Framework ...... 12 Research Questions ...... 13 Definition of Terms ...... 15 Physical Disability/Impairment ...... 15 Disability Identity ...... 17 Difference ...... 18 Communication ...... 19 Significance of the Study ...... 20 Limitations of the Study ...... 22 Outline of the Dissertation ...... 23 Summary of the Chapter ...... 24 Chapter 2: Review of the Literature ...... 25 Theoretical and Conceptual Framework ...... 27 Symbolic Interactionism ...... 27 Disability Narratives and Discourse ...... 29 A. Perceptions of Disability in sub-Saharan Africa ...... 29 B. The Contemporary Perception of Disability ...... 33 The Models of Disability ...... 34 Moral Model...... 34 The Charity Model ...... 35 The Medical Model ...... 36 The Social Model ...... 39 viii

The International Classification of Functioning Model ...... 40 Disability and Development ...... 42 The Development of the Disability Rights Movements and Disability Organizations ...... 43 Historical Overview of Initiatives to Protect and Promote the Rights of People With Disabilities ...... 44 Non-Governmental Organizations ...... 47 Summary of the Chapter ...... 49 Chapter 3: Method ...... 50 Data Collection ...... 52 Procedure in Data Collection ...... 53 Sampling and Participant Selection Criteria...... 54 Participant Recruitment ...... 55 Instruments in Collecting Data ...... 60 Reflexivity ...... 63 Data Analysis ...... 64 Trustworthiness ...... 68 Summary of the Chapter ...... 68 Chapter 4: Overview of The Gambia ...... 70 Research Setting and Population of the Study ...... 70 Disability in The Gambia ...... 71 Disability NGOs in The Gambia ...... 73 The Gambia Federation of the Disabled ...... 73 Disability Services in The Gambia ...... 74 Policies and Laws on Disability in The Gambia ...... 76 The Gambia Organization of the Visually Impaired (GOVI) ...... 77 GOVI’s School for the Blind ...... 79 Rehabilitation Projects for Blind Adults ...... 82 Challenges of GOVI...... 83 Successes of GOVI ...... 86 Summary of the Chapter ...... 87 Chapter 5: Findings ...... 88

Description of Participants ...... 89 Participant 1: Ebrima Leigh, Male, 49 years old ...... 89 Participant 2: Ndey Yassin, 55years old ...... 90 Participant 3: Kebba Samba, 64 years old ...... 91 Participant 4: Adama Barry, 36 years old ...... 92 Participant 5: Fatou Gaye, 42 years old ...... 93 Participant 6: Jainaba Hydara, in her early 40s ...... 94 Emergent Themes ...... 95 Identification as Community Reliant ...... 97 Identification as Self Reliant and Employed (Economically Independent) ...... 104 Identification of an Assertive Group ...... 114 Summary of the Chapter ...... 117 Chapter 6: Discussions of the Findings ...... 119 Summary of Findings ...... 119 Creating Self-Identity Through Social Structures ...... 122 The Sense of Self in Identity Formation ...... 126 Religion and Faith in Embracing Disability Identity ...... 128 Disabilities and Fixed Identity ...... 130 Practical Implications...... 132 Limitations of the study and Suggestions for Future Research ...... 136 Conclusions ...... 137 References ...... 140 Appendix ...... 162

List of Figures

Page

Figure 1. Map of The Gambia (from Wikipedia...... 71 Figure 2. Rugs made out of rag clothes: Photo by Marion Mendy...... 80 Figure 3. Blind students singing: Photo from (GOVI’s website...... 81 Figure 4. Skill center for rug making: Photo by Assan Sarr...... 82

Chapter 1: Introduction

Our language and meanings for disability constrain our interactions with persons with disabilities and how we conceptualize experiencing disability. (Stephanie Coopman, 2003, p. 338).

The Beginning of Inquiry

In the part of the West African region where I grew up, there are some widely held stereotypes towards persons with disabilities (Ndlovu, 2016; Swartz, 2014). Many people in The Gambia perceive people with disabilities as a burden to society. These attitudes have unknowingly been inimical to our national development efforts for a long time. My earliest memory of engaging with an individual with a disability was when I was young after my grandfather passes away. My grandmother hired a man named

Kawsu to cut the grass and trim the tree branches at our Fajara residence. As I was playing with my younger sister and two of my cousins, not too far from where the man was working, I suddenly noticed something different in the way he was holding the machete that he was using to trim the branches. I remembered being shocked when he showed us his hands after I asked him why he was holding the machete that way. I recalled it took him a while before he responded saying, “Look, I don’t have any fingers and that is why I am holding the machete differently.” Shocked, I noticed two shortened fingers on his right hand and absolutely no fingers on his left hand. There was a big lump in the middle of his left palm – in fact, both of his palms looked round and hard.

That was the first time I met Kawsu. He was probably in his mid-forties. He had leprosy but maintained his industrious and hardworking spirit. Kawsu was very fun of me and my sister. What was profound and intriguing to me was that Kawsu was able to do many laborious jobs that society believed people with disabilities could not do. My

grandmother Abigail, and a few other resident owners around our neighborhood at the time, may have believed that hiring Kawsu to do some job in their homes was a positive thing to do. Also, they did this not because they were sympathetic towards him, or because of his persistent and resilient attitude, but because they saw him as capable of the job, regardless of his disability. My grandmother told me that Kawsu had told her that he prefers to earn his money rather than to beg for charity.

Indeed, Kawsu proved himself to everyone. He always did a great job, and sometimes I believed he did the job just as good as an able-bodied person would have.

(At least, I have always heard my grandmother make such comments.) However, unlike

Kawsu, many others with disabilities are not given the chance to prove themselves, and they are mostly subjected to rejection and discrimination (Morris, 2014; Swartz, 2014).

They are viewed as dependent on society for most of their everyday socio-economic needs (Morris, 2014; Whyte & Ingstad, 1995). For a long time, these socio-cultural, historical, and religious beliefs have caused the destitution of many people with disabilities and have continued to perpetuate them as mendicants in this part of the continent (Jordan, 1999; Mabundza, & Dlamini, 2018). They lack the chance to prove themselves.

Amie (a pseudo name), a girl in my fifth grade with physical deformities and epilepsy, was the second person with disability with whom I had close contact. I never actually interacted with Amie other than just simple greetings. There were so many stories regarding her physical disability and common seizures that even before I advanced to fifth grade, I had heard stories about how she was possessed by a jinn spirit and has the 2

strength of the jinn that controls her. But, most convincingly, stories about how one can be infected just by touching – and most especially being touched by the saliva that discharged from her mouth during her seizures, made the entire class scared of her. Amie had repeated fifth grade for the third time by the time my peers and I joined her. She was in her teens while we were in our pre-teens. She had no friends at school– she sat alone and none of us got close to her. The teachers never corrected us, never debunked or even tried to demystify the stories surrounding Amie’s condition. The teachers were in a position of power at the time to stop such stories circulating, or at least change the narratives that were being planted in our little minds even before they became hardened, but they never did. So, we were somewhat socialized to have some negative perceptions of people with disabilities.

On several occasions, I witnessed Amie having seizures, and I also witnessed her fight, or rather beat, another student just because they had stared at her too much or ignored her while she was talking to them. I and my peers never attempted to help but always ran out of the classroom and left the teacher to handle it. Though I had seen persons with disabilities before, Amie’s own case was too complicated for me to process, especially when I had no explanation from an adult. Actually, I never talked about Amie to any adult. Now, looking back, I cringe at my earlier attitude and communication about

Amie. Why did the teachers not educate us about her disability? No doubt, Amie was lonely, and I still wonder what she was thinking and how she felt at the time.

According to Coopman (2003), “communication mediates the disability experience” (p. 337). The stories about Amie affected how we communicated with her – 3

verbally and nonverbally, which in turn differentiated her school experiences from what other children experienced such as creating bonds of friendship. In fact, researchers have shown that the real obstacles that people with disabilities face are not their different forms of impairment, but rather the numbers of environmental barriers that prevent them from reaching their full potential. Swartz (2014) noted these barriers as “cultural, religious, social, physical, historical, and personal attitudes in the society” (p. 30).

Additionally, the communication that surrounds people with physical disabilities hurts them socially, physiologically, and emotionally.

Like several people with disabilities that I interviewed, Kawsu, never wanted to be a mendicant. But because of societal attitudes and beliefs towards people with disabilities, they are subjected and compelled to beg for alms. Kawsu was among the few exceptions that beat the odds. Kawsu could never see himself begging. He worked as a security guard at night for an Aku (Creole) family in a small southern town called Bakau

Newtown, which was about five kilometers from my family’s house. During the day, between 9:00 am to 4:00 pm, Kawsu would go around from one house to another asking if they needed someone to do part-time jobs in their homes. Although Kawsu was not married and did not have any children, he financially supported his parents and siblings back in his village. He told me many stories about himself; he talked about incidences when he was ridiculed, insulted, and denied many opportunities such as education and jobs. He was marginalized because of his disability, yet he thrived.

As my awareness of Kawsu’s situation increased and became more sophisticated, so did my interest about people with disabilities. In May of 1996, my interest in disability 4

issues grew after reading a book for my literature class in high school. Aminata Sow

Fall’s The Beggars’ Strike (1979) gave me insight into the terrible discrimination against people with disabilities, including the prejudice and the continuous degrading of people with disabilities in my society. Her work not only enlightened me to the painful experiences of people with disabilities, but also portrayed them as having some kind of agency – showing their consciousness of their role and importance in the society (Fall,

1979). That same year, I watched for the first time the Walt Disney movie The

Hunchback of Notre Dame (which is still my favorite Disney movie), and its soundtrack

Someday written and compose by Alan Menken and Stephen Schwartz (1996) emboldened me. I realized that people with disabilities could be part of national development and not a liability if they are given the opportunity and resources to work. If given the choice and the chance, they would prefer to partake in national development and not settle for the mendicancy position they have been subjected to in some societies.

Kawsu also told me he had never been to school but went to Dara (Quranic

School) instead. He also learned a few technical skills such as carpentry and farming from his dad growing up, once the leprosy disease began in his teenage years. According to him, it was a devastating time and a turning point in his life. His family consulted and got advice from native doctors, and he took local medications to cure the disease. During some of the many conversations we had, Kawsu narrated how, at the time, there was no hospital or other institutions in his village for him to seek medical attention and advice.

He mentioned that traveling to the city to go to a hospital was not an option because his family was poor. But, for Kawsu, what was most distressing was the fact that he was 5

stigmatized by many people in his village who termed him disabled from the initial stage of the disease, even though he could still do many everyday things. As the disease gradually progressed, Kawsu also learned to do things differently because most of his fingers and toes became shortened and little by little his hands became paralyzed. Kawsu would always put on a long sleeve shirt or boubou (a local clothing worn by people in most parts in West Africa) that would cover his hands. Except for his unsteady walk, one could hardly tell he is disabled.

In 2017, I visited Kawsu after many years of not seeing him. We cried. We laughed. We talked. When I told Kawsu about my dissertation project, he was thrilled and said “I have always wondered why you ask me so many questions as a young girl.

Other children don’t really care, you know. I am not too surprised you are still asking questions about people like me. So, tell me, why are you so interested in us?” (personal communication, K. Badjie, June 8, 2017). I explained to him that the question he asked is a key component of my dissertation. The information I received from Kawsu was great but seeing him after such a long time and listening to his stories about how he is struggling in his everyday life gave me more courage to do this study. We talked about organizations that help and work with people with disabilities. According to him, he knows of such organizations and disability groups, but he has never participated in the programs they offer, and he has never been approached by these non-governmental organizations (NGOs). I wondered how these NGOs operate and about their intervention and development agendas.

Statement of Problem and Contextual Background

My engagement with Kawsu growing up is by no means unique or unusual.

Rather, the stories he narrated about his experiences, and that of other individuals like him, were shaped by the communication surrounding them and highlight the stigmatizing challenges faced by the disabled community in The Gambia. Often, these challenges persist throughout their lifetime. So, how do individuals with disabilities cope and endure such challenges? And more importantly for this study – how do these challenges impact the holistic health of these individuals, including their social, physical, psychological, and spiritual health and functioning?

In The Gambia, many people with disabilities face social stigma, discrimination, and prejudices because of the widespread belief that disability is a result of punishment from God (Bah & Sidibeh, 2015). According to Gamble (1976), the belief in supernatural beings such as witches, sorcerers, sprits, and werewolves are not uncommon in the

Gambian society (Bah & Sidibeh, 2015). These beliefs play a significant role in reinforcing the conviction that disability are either to be avoided, feared or ignored.

Viewing them as the “other,” people with disabilities are often excluded from most activities and have limited opportunities to obtain health care services, education, and employment (UNICEF & Ministry of Basic and Secondary Education, 2013; United

States Department of State, 2016).

While such views are still widely prevalent, and people with disabilities are considered a liability to their families and the society, the contemporary religious belief systems in The Gambia, namely, Islam and Christianity, have minimized these strongly 7

held convictions. Through my observations, people with disabilities are often pitied and forced to be dependent on religious alms giving and charity. The religious belief of giving alms to the poor is of great importance for every Muslim in the country.

Contemporary religious doctrines, particularly Islam, encourages followers to give

Zakat—a form of alms-giving treated in Islam as a religious obligation or tax—to the poor and less fortunate (Biegon, 2011). For many Gambian Muslims, giving alms to the poor, especially persons with disabilities, assures blessings, deliverance from evil, and good fortune. For a long time, this belief has prevailed and has become a norm in the mindset of many Gambian people, including people with disabilities themselves. With this mindset, the Gambian society therefore rendered people with disabilities as a group that relies on charity for survival. Bah (2016) describes this attitude as the charity or dependent model.

Due to some of the negative social attitude towards people with disabilities, the disability community finds it hard to integrate into the Gambian society, as social stigma and discrimination are still common (Bah & Sidebeh, 2015). Scholars question whether exclusion from the socio-economic and political participation in the country has caused negative self-image among people with disabilities. For example, according to Bah and

Sidebeh (2015), there are families in The Gambia who are ashamed of their disabled relatives to the extent that children with disabilities are locked up or hidden away from the community. My research suggest that some families might be resorting to these measures not because they dislike their disabled members of the family but because they

themselves are victims of the broad social stigma a family endures if it has a disabled person within its ranks.

Added to the social stigma is the very actions of the state against people with disabilities. There were times when the Gambian government had exhibited hostility towards persons with disabilities. In June of 2010, The Gambia government arrested beggars and mentally disabled individuals that were loitering in the streets of major cities in the country in an effort to end street begging, which they view as a public nuisance (S.

Janha, Interview, June 10, 2019; USCID, 2010). However, it is important to mention that in spite of all these beliefs and incidents, the Gambian society is tolerant of individuals with less severe disabilities, such as hearing disabilities, cognitive or learning disabilities and invisible disabilities. They are usually fully accepted in society, and they tend to encounter less “discrimination in employment for which they are capable” (USCID,

2010, p.13).

This study focuses on how individuals with disabilities and/or impairment have incorporated and accepted their disability as part of their identity. The study examines individuals who have the kind of disabilities that are associated with “differential treatment” (Darling, 2013, p. 2) within the society in a variety of ways. The study will also look at ways in which people – family members, peers, teachers, NGO workers, and others – communicate with and about people that have disabilities. Here, I am referring to communicative interactions, behaviors, and attitudes, which include face-to-face and nonverbal communication. My study defines communication within the social constructionist perspective as a dynamic process by which humans produce and 9

reproduce social and individual representation and understanding of reality through symbolic interaction and social behavior (Berger & Luckmann, 1966).

This dissertation also seeks to evaluate the successes and constraints of the communicative practices of the disability NGOs as advocates and source of support for members of Gambia’s disability community. In doing so, it hopes to gain insight into how people with physical disabilities make sense of their experiences in reference to their identity as a differently abled persons living in The Gambia. To understand what it means to be disabled in The Gambia, this dissertation examines the perceptions of people living with disabilities, family members of people with disabilities, and employees of the disability NGO – The Gambia Organization of the Visually Impaired (GOVI). In essence, this study will also examine the communicative practices of the disability NGO, GOVI, highlighting how the organization engage with the disability community while conducting their intervention work. The interviews ensure the study captures varying perspectives of how people with disabilities make sense of their identity in The Gambia.

The study provides a deeper understanding by illuminating the experiences of people living with disabilities. Hence, the study sheds light on the everyday experiences and challenges of people living with disabilities in The Gambia as they interact with others in the Gambian society.

Humanitarian agencies, including NGOs, have responded to crises in sub-Saharan

Africa by providing access to drinkable water, education, finance, food and basic health care. NGOs and aid agencies have also enabled advocates to put the poor countries on the agenda of some of the powerful states and organizations by prompting actions to 10

ameliorate the problems of the poor. Autesserre (2012) argues that the “well-meaning international efforts championed” (p. 204) by aid agencies have also “had unintended consequences” (p. 204), which sometimes have worsened the situation of the people they are seeking to help. Moreover, a number of my informants feel that some of the NGOS are exploitative in using the plight of the people with disabilities to raise funds but do very little to deal with their problems. The NGOS that have been identified to have the most impact on this community include GOVI but many people with blindness that I interviewed said they either do not know the organization or have not been included in its programs.

Nevertheless, the dissertation argues that the disability NGOs have perhaps contributed to changing some of the local beliefs about disability. Participants in my focus group acknowledged the fact that even though the negative attitude towards people with disabilities prevails, some traditional views and beliefs about individuals with disabilities have changed and/or ceased. For instance, it is now frowned upon for someone to laugh openly at or directly insult people with disabilities in public; other people will reprimand the individual who expresses such open disrespect. Besides, it is taught that one does not know how one’s life would end, and that being the case, it is bad to insult or mock people with disabilities since one might become a disabled person in the future. As one participant commented:

You know, when it comes to disability, people think that it is all about those in the wheelchair, white canes, and those with the hard of hearing. Some do not know that certain illnesses are prone to cause disabilities. Illnesses like diabetes, hypertension, and even HIV can cause disability.

Attitudinal changes towards individuals identified as disabled are due to several factors. According to participants it is due to the pressures of activist groups, disability

NGOs, the media, and most importantly, religious teaching (Islam and Christianity).

Thus, GOVI’s communication of disability have in many ways gone far to shape social perceptions of disability as well as the lived experiences of people with disabilities but the organization have not seem to incorporate much of the “positive” attributes or images of disability in their communication of how the larger society should help remove the barriers that continues to restrict members of this community from their marginalized positions in Gambian society. The basic premise of my argument follows Sen (1999)’s argument that the expansion of freedom [which could also mean inclusion of all people] is viewed both as the primary end and as the principal means of development. For Sen

(1999), “development requires the removal of major sources of unfreedom” (p. 3), namely poverty, poor economic opportunities, intolerance and systematic social deprivation (Sen, 1999).

Methodological and Theoretical Framework

This dissertation relies on a qualitative approach, specifically an ethnographic method to (1) gain insight into how people who identify as a differently abled person make sense of their experiences of difference and (2) examine the how people – specifically family members, caregivers, and NGO workers – perceive the differently abled people. To do so, this study is informed by symbolic interactionism theory as well as the literature of disability studies and the disability rights movement.

Using ethnographic study, I employed participant observation techniques and in- depth interviews using a semi-structured technique with all of my participants.

Participants were recruited through referrals and snowball sampling. After collecting my data, all data was transcribed, coded, and analyzed. At the end, I will discuss themes, patterns, and study results.

Research Questions

In The Gambia, many people believe those with disabilities need help physically and economically (The Gambia Federation of the Disabled, 2016; Bah & Sidibeh, 2015).

It is assumed that they physically lack the capacity to do much for themselves because of their disabilities, meaning they cannot work or be employed to do routine tasks because they also lack formal education. Due to these reasons, disability organizations draw our attention to the fact that people with disabilities are marginalized when it comes to job accessibility, education, and civic participation. Therefore, in The Gambia, disability

NGOs and donor agencies assume that people with disabilities need education in order to have qualifications to be employed (GOVI, 2010; Bah & Sidibeh, 2015). They provide schools and advocate for the rights of people with disabilities. However, the Gambian society still views people with disabilities as a group that relies on society for assistance and financial aid, like beggars and the disability NGOs challenge these societal attitudes/beliefs. The Gambians believe that they are sustained through charity and the goodwill of the communities in which they live.

For a long time, these ideas have shaped both the peoples’ perception and even the self-perception of some individuals with disabilities in The Gambia. One core 13

premise of Symbolic Interactionism is that, because of “language” and “meaning,” we tend to act towards other people and things according to the meanings that are given to them, and these meanings reflect how we behave or interact with them (Mead, 1934). In

The Gambia, some of the languages that are used when referring to people with disabilities, and the meanings attached to them, can be derogatory and hurtful. Although these terms are considered to be demeaning and might cause low self-esteem, hopelessness, evasiveness, and even lack of confidence, these characteristics of negative self-images are far from what my data indicated. Despite the fact that the meaning attached to disability in The Gambia and many other sub-Saharan countries is one of desolation and helplessness, the data show that people with disabilities in The Gambia have a very positive mindset: confident, fearless, and wanting change. Although the thoughts of some persons with disabilities in The Gambia have been shaped by the meaning and messages of others, there are several individuals whose self-esteem has not been affected by society, probably because they have different interpretations of their reality. Therefore, negotiating their disabled identity within the Gambian society implies that persons with disabilities have to change the minds of others about their reality and situation.

This dissertation will help us understand how people with disabilities in The

Gambia construct and interpret their identities as a result of their experiences of being differently abled. The study will shed light on the everyday experiences and challenges of people living with disabilities in The Gambia as they interact with others. The research will also examine the ways in which disability NGOs collaborate with and advocate for 14

people with disabilities. To achieve these goals, the following research questions will be asked.

RQ1: What is it like to be a person who is differently abled in The Gambia, and how are those identities constructed?

RQ2: What specific communication challenges do people who are differently abled in

The Gambia face?

Definition of Terms

Physical Disability/Impairment

The terms disability, impairment, and handicap are all different words that have been used to describe physical and mental functioning conditions that deviate from social norms (Darling, 2013). The concept of disability has been difficult to define, and there is yet to be a definite global definition for it. Bérubé (2013) notes that, just like the definition of illness, the definition of disability is inevitably a matter of social debate and social construction. The concept of disability is usually used as an umbrella term for limitation of the functional use of the various parts of the body. This definition is considered by some to be too broad. For example, Anastasiou and Kauffman (2011) argue that it is wrong to combine different disabling conditions under one term. For them, disability cannot be generalized because making a generalization about people with disabilities can be misleading since there are different forms of disabilities. Anastasiou and Kauffman (2011) contend that physical disabilities are different from other conditions such as intellectual disabilities, autism, sensory disabilities, and emotional and behavioral disorders – they are diverse and heterogeneous. 15

Based on these complex and multidimensional considerations, the definition of disability has changed many times in the last decade. Disability is defined by the UN

Convention on the Rights of Persons with Disabilities (UNCRPD) as persons “who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (CRPD, 2006, p. 4). The World Report on Disability (WRD) defines disability as a term for “impairments, activity limitations and participation restrictions, … the negative aspects of the interaction between an individual with a health condition and that individual’s contextual factors environmental and personal factors” (Bickenbach,

2011, p.7). However, for Linton (2013), disability “appears to signify something material and concrete, a physical or psychological condition considered to have medical significance” (p. 162). This definition does not take into consideration the social perspective of disability. From a disability movement point of view (Campbell & Oliver,

1996; Shakespeare, 1993, 2013), the term is defined as:

The disadvantage or restriction of activity caused by a contemporary social organization, which takes no or little account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities. Physical disability is therefore a particular form of social oppression (p. 20).

Scholars, activists, and disability groups have emphasized the negative connation assigned to the term disability and have stressed the reconsideration or shift the definition of medical model to the social model (Linton, 2013; Mitra, 2017). For the purpose of this dissertation, I am referring to people with physical disabilities as those with severe impairment of vision, hearing, mobility, or body structure such as loss or deformity of an 16

arm or leg. In some instances, I have used the term “differently abled individuals” interchangeably with “people with disabilities.”

Disability Identity

Identity is defined as the “set of behavioral characteristics by which we identify ourselves as belonging to a social group" (Essien, 2009, p. 63). This can include

“collective identity” (Galvin, 2003; Koschmann, 2013), such as the Disability People’s

Organizations or the disability rights movements, and other individual and person factors like gender, race, ethnicity, etc. However, identities are not fixed; rather they are

“constantly evolving” (Watson, 2002, p. 5ll) and often depend on context (Reeve, 2004;

Rhodes et al, 2008). For instance, Creamer (2008) describes the flexibility that was part of her disabled identity as feeling disabled when affected by impairment, but the next day perhaps not.

In his book Disability and Identity, Darling (2013) uses the term "disability identity" as that part of the “self-concept that emerges for the disability-related self- definitions that exist within an individual” (p. 7). McCall and Simmons (1978) describe the process of identification through which individual categorizes themselves as occupants of roles. Individuals learn that certain behaviors or roles are associated with statues and role. For Darling (2013), just as other individuals occupy numerous statuses and have the ability to play multiple roles, so do people with disabilities. As people with

“disabilities have other identities in addition to their identity as a disabled person,” this study will focus particularly on the identity of individuals who are differently abled

(Darling 2013, p. 8). Thus, the identities of individuals with disabilities is discussed in the context of this study by using the terminology disability identity.

Difference

In communication studies, Allen (2011) uses the term “difference” to refer to a variety of social identities, whilst Davis (1997) defines difference as a perceived deviation from what is already culturally constructed as normal. For this study, I use the term as specified by Wendell (1996):

Difference is a more general concept than either ‘Otherness’ or stigmatization, both of which are forms of difference. Difference is also more value-neutral than either stigmatization or ‘Otherness,’ and it is therefore possible and necessary to ask whether a particular kind of difference is good as or better than ‘normality (p. 66).

Hence, in this study, the term difference refers to physical difference. People with disabilities are often defined as a “group of people whose bodies do not work; or look different or act differently; or who cannot do productive work” (Shakespeare, 1996, p. 2).

Shakespeare (1996) identifies two key elements in analyzing “difference” in terms of disability; performing and conforming – “which raise the question of normality” (p. 2).

That said, the concept of “difference” can mean or be constructed differently by people with disabilities depending on how they perceive themselves. Coleman (1997) suggests that difference is a value-neutral concept because, even though those perceived as different are often stigmatized, sometimes they may be subjects of positive interest and approval. Scholars have argued that although difference is often regarded as a source for shame, isolation, discomfort, and low self-esteem, it is not always the case (Marshak,

Seligman, & Prezant, 1999; Wehmeyer, 2003). 18

Nevertheless, the concepts of construction and negotiation are critical to understanding communication. According to Allen (2011) difference is constructed and negotiated through communication because we communicate social identities through implicit and explicit communication styles. People with disabilities are usually differentiated in various social interactions, such as during intrapersonal and interpersonal interaction and through complex cultural communicative processes.

Communication

In numerous ways, communication helps constitute identity. It is defined as a transactional, constitutive, social constructive perspective that produces and reproduces social representations and understandings of reality through symbolic interaction and social behavior (Berger & Luckmann, 1966; Graig, 1999). Allen (2011) refers to communication as the dynamic, complex, continuous, and contextual processes that humans use to produce, interpret, and share meaning. In most cases communicative behaviors, interaction, and interpretation tend to shape and reflect the social context within which they are situated. Communication is mostly enacted intentionally, though sometimes unintentionally, through human interaction and behaviors during face-to-face verbal and non-verbal exchanges.

Communication plays a central role in retaining and revising perception of disabilities. For example, without the intention of sending a negative message, media portrayals of people with disabilities as victims or burdens on family members, friends, and society (see Farnall & Smith, 1999) construct disability stereotypes, which do not represent the actual experiences of most people with disabilities. 19

Significance of the Study

Because there is a connection between physical disability and the experience of being differentiated, stigmatized, and prejudged through various communicative practices, it is of central importance that people with disabilities are given the opportunity to voice their experiences as disabled in The Gambia. Disabled people – men and women,

– have very little opportunity to communicate their own experiences and stories about their lives within the general culture in The Gambia. Most of their experiences are isolated and personalized. Yet, these personal experiences are all shaped by the culture in which they live. These individual stories are a central focus for this study, given that their narratives stretch beyond their personal experiences to illuminate aspects of the Gambian society’s mainstream culture regarding people with disabilities.

Until recently, there has been limited scholarship on disability in The Gambia.

Research articles have been published about the factors hindering people with disabilities in The Gambia. For example, Bah’s Disability and Integration: Gambian Experience

(2016), which employs surveys and focus groups interviews, to examine the major issues hindering the full integration of individuals with disabilities into the Gambian community. Coleman, Loppy, and Walraven's (2002) research, titled The Treatment Gap and Primary Health Care for People with Epilepsy in Rural Gambia, focuses on the primary-level management for people with epilepsy in rural Gambia. Also, the work of

Walker, Rolfe, Kelly, George, and James (2003), Mortality and recovery after stroke in

The Gambia, investigates the case fatality, time and cause of death, and recovery in a hospital cohort of stroke patients in The Gambia. 20

Only a few researchers have documented the discrimination and prejudice encountered by people with disabilities in The Gambia (Bah & Sidibeh, 2015;

Baboudóttir, 2018; WHO.org, 2011). Only the research by Baboudóttir (2018) came close to discussing the identity of the disability community in The Gambia. In her thesis,

“Disabled People’s Organizations and their Members in The Gambia,” the author deliberates on The Gambia Federation of the Disabled, a non-governmental and community-based disabled people’s organization in The Gambia that operates in the development sphere. Through individual and focus group interviews, her thesis discusses some of the major challenges that the disabled members in these organizations are facing.

Although these studies shed light on the plight of the disability communities in The

Gambia, no research has been done on the disability identity experience and how the mainstream communicative practices shape the experiences of people living with disabilities in The Gambia. Moreover, the personal voices, narratives, and experiences of individuals living as a disabled person in The Gambia are yet to be explored and fully documented. Thus, there is a gap in the literature on the communicative practices related to disability identity in The Gambia.

The insights that result from this study contribute to communication studies scholarship, particularly in areas of organizational and interpersonal communication. The study facilitates a better understanding of communication processes related to intervention programs by providing practical examples on how NGOs communicate and interacts with their stakeholders, and how it can be done more effectively, especially when working with disability groups. Secondly, through the narratives of people with 21

disabilities, the communication studies discipline gains greater awareness of the constitutive role that communication plays in shaping the reality of people with disabilities, which can encourage a more sensitive, respectful, and empowering communication style on the part of NGO workers, health care professionals, teachers, and others.

In addition, the study will also expand communication research as well as disability studies scholarship. There is no scholarly work that pertains to communication practices that surrounds people with disabilities in The Gambia. There is also limited research on how to communicate with patients that have chronic illnesses, and even people with chronic illnesses and disabilities. Lastly, this study is of immense value to the

Gambians, particularly the disability community as well as other Sub-Saharan African countries. This is because the results and analysis of this study can help to develop a more relevant development agenda for issues of disability, which will in turn have a positive impact on the lives of people with disabilities.

Limitations of the Study

This research is limited to the experiences of difference of those people who identify as physically disabled or those who are associated with them. While the experiences of people with other forms of disabilities, such as cognitive disabilities and chronic illnesses, might be relevant and comparable in many ways, these groups will not be represented in this study. Hence, this research does not seek to make broad and sweeping generalizations of the experiences of all people with disabilities in The Gambia.

Secondly, my focus and the location of my fieldwork will be concentrated within urban areas, which excludes people with disabilities in the rural areas. Certainly, the perspectives and experiences of those living in urban areas may not represent the perspectives of those who live in the rural areas.

Outline of the Dissertation

This dissertation will be divided into six chapters and will be organized as follows: The first two chapters lays out the broad theoretical, methodological and conceptual framework of this study.

Chapter 1: The first chapter comprises the introduction, rationale, background, and context of the study.

Chapter 2: The second chapter discusses the theoretical and conceptual framework of this study, drawing on a rich body of scholarship.

Chapter 3: The third chapter outlines the methodology and research design of the project. It also explains how and why ethnographic method was used as a research design, and the chapter will also discuss the participants, data collection procedures, instruments for data collection, data analysis procedures and validation strategies.

Chapter 4: The fourth chapter, which serves as the context chapter, gives an in- depth overview of The Gambia and the disability NGO being examined in this study, which is GOVI.

Chapter 5: The fifth chapter discusses the findings of this study. The chapter offers not only broad characterizations of how people with physical disabilities make sense of their experiences in reference to their identity as a differently abled persons 23

living in The Gambia but also foregrounds the voices of some of the participants of the study.

Chapter 6: The sixth chapter draws conclusions based on my findings, discusses the practical implications of the study, identifies the limitations of the analysis, and suggests areas for further research.

Summary of the Chapter

In this introduction chapter, I outline the beginnings of my inquiry and interest on the issues of physical disability and difference by sharing a personal narrative about my earliest encounter with people with disabilities. The rationale and the significance of the empirical study, as well as the contextual background and the general perception of disability within the Sub- Saharan Africa region, are also discussed in this chapter. In addition, the introduction establishes the methodological and theoretical framework, as well as the research questions for the empirical study. Finally, this introduction concludes by explaining the importance and scholarly contributions of the study and explicates each chapter of the project.

Chapter 2: Review of the Literature

Three bodies of scholarship inform this study: the first is the literature on symbolic interactionism; the second is the literature on disability studies, and third is the literature on the disability rights movement. This chapter aims at offering a broad theoretical and conceptual framework for my dissertation, highlighting the importance of communication in the context of disability narratives and discourse and development.

Over the years, communication scholars and others have critiqued the dominance of the biomedical model of disability (Boyle, 2014; Coopman, 2003; Couser, 1997;

Frank, 1995; Graue, 2016; Hiller, Guillemin, & Delany, 2015; Kleinman, 1988;

Runswick-Cole, 2014; Zook, 1994). They have argued that, for a long time, disability issues have been viewed purely from a biomedical standpoint of health that focuses on bodily health and scholars have rarely paid attention to the role of disability within social context or the people’s holistic experiences, nor have the consequences of communication in reference to the political and economic health of the disability in The

Gambia been fully considered. Zook (1994) argues that communication scholarship has a unique and pervasive role to play in viewing health holistically, not only focusing on physiological, but also on the psychological, social, emotional, spiritual, and societal meanings of health, healing, and coping.

Although researchers in the fields of psychology and nursing have focused extensively on the psychosocial aspect of chronic illness that are associated with disability (Adelstein, Anderson, & Taylor, 2014; Mishel, 1997; Cypress, 2016), the communication scholarship has attended to the relevance of communication and narrative 25

in health care issues and how patients cope with illness (Dennis, Kunkel, & Keyton,

2008; Matthias, 2009). Yet, much of the scholarship on disability in Africa has concentrated mainly on access of disabled persons to education and technology (Drame

& Kamphoff, 2014; Marjinge & Stilwell, 2014; Mokiwo & Phasha, 2012; Murphy et al.,

2014; Niekerk & Tonsing, 2015; Tebbutt et al., 2016). Numerous studies have also focused on physical disabilities (Baffoe, 2013; McKenzie, 2013); mental illness and diseases such as multiple sclerosis and AIDS (De Beaudrap, et al., 2014; Groce et al.,

2013; Marais & Petersen, 2015; Schierenbeck et al, 2013); and deafness, learning disabilities, and blindness (Johl & Pienaar, 2013; Naidoo et al., 2014). One emerging area of research is how the use of assistive technology is improving the lives of many people with disabilities in Africa. Since 2000, there appears to be a general upsurge in research on disability and access to technology in Africa (see Eide, & Øderud, 2009; Gcaza &

Lorenzo, 2008; Ripat & Woodgate, 2011; Swartz, 2009).

The scholarship on disability issues in sub-Saharan Africa have so far concentrated primarily on countries such as South Africa, Ghana, Senegal, and the

Democratic Republic of Congo. While the foci and approaches adopted in these studies are varied, none have explicitly looked at the disability identity experience in The

Gambia and how mainstream communicative practices of the disability NGOS shape the experiences of people living with disabilities in The Gambia.

Theoretical and Conceptual Framework

Symbolic Interactionism

Symbolic Interactionism (SI) is one approach that effectively frames how communicative practices have shaped the lived experiences of people living with physical disabilities in The Gambia. Using SI helps increase our understanding of the interactions between people with disabilities and others in the Gambian society, particularly with individuals working for the disability NGOs. George Herbert Mead

(1934) first developed the theory in the early twentieth century, and it was expanded by

Herbert Blumer (1969). The two proposed that the development of the individual is a social process, as are the meanings individuals assigned to things.

According to this theory, in any given society, as we socialize into a larger community, we create the “self” as a person (Griffin, 1997). As humans, “we are more or less unconsciously seeing ourselves as others see us and we are unconsciously addressing ourselves as others address us” (Mead, 1934, p. 68). Being disabled is a characteristic sufficient to label, stigmatize, and stereotype an individual (Fine & Asch, 2018).

According to the interactionist perspective, people with disabilities are constructed as

(and often view themselves as) disabled and different in relation to what is socially accepted as normal range of wellness, bodily configuration, or functionality (Davis,

1997). In fact, “societal perceptions of disabled persons tend to be influenced entirely by the disability” (Fine & Asch, 2018).

People with disabilities are therefore constructed and defined by the impairment of their bodies. In his edited volume Body/embodiment: Symbolic interaction and the 27

sociology of the body, Vannini (2016) mentions that “from a general interactionist perspective, the body is always more than a tangible, physical, corporeal object” (p. 3).

For Vannini (2016),

The body is also an enormous vessel of meaning of utmost significance to both personhood and society. The body is a social object, which is to say that, the body as an object cannot be separated from the body as a subject; they are emergent from one another (p.3).

From this perspective, the term embodiment refers to the process by which “the object-body is actively experienced, produced and sustained, and/or transformed as a subjected-body” (p. 3). Waskul and van der Riet (2002) note that “the body, self, and social interaction are interrelated to such an extent that distinctions between them are not only permeable and shifting but also actively manipulated and configured” (p. 488).

Although people with disabilities are constructed as different through social interaction, which can result in varying perceptions and experiences of difference by people with disabilities, these experiences of difference are interpreted or embodied differently. Marshak, Seligman, and Prezant (1999) argue that individuals with disabilities, especially adults, not only have diverse cultural experience of stigma associated with their disabilities, but most of them also “do not necessarily internalize distorted images others often hold of them” (p. 127). They believe that the people without disabilities tend to exaggerate the degree and consequences of physical difference associated with physical disability (Marshak, Seligman, & Prezant, 1999). Coopman

(2003) agrees with them and adds, “the degree to which persons with disabilities participate in their identity definitions remain contested” (p. 360). My interviews support

this claim: Some of my participants informed me that how they perceive their disability conditions differ from how they are viewed by other people within Gambian society.

The three core principles of the SI theory – meaning, language, and thought – are crucial to understanding how the communicative practices surrounding people living with physical disabilities in The Gambia shape the identity of the disabled. The meanings given to the different types of disabilities, as well as the thoughts and perceptions combined with the languages that are used around people with disabilities, usually emphasize their difference. These meanings that people with disabilities attach to their physical disability are of central importance to this study.

Disability Narratives and Discourse

A. Perceptions of Disability in sub-Saharan Africa

Historically, the local beliefs about disability vary considerably in Africa. As

Ndlovu (2016) states, “there are no absolute, binding, and categorical doctrines concerning disability. Instead, there are direct and indirect teachings, attitudes, perspectives, insights, and principles that can be inferred from what particular African peoples do” (p. 32). In fact, indigenous African beliefs, which are deeply rooted in

African societies (Maluleke, 2010; Ndlovu, 2016), view disability and people with disabilities both negatively and positively. Negatively, disability is regarded as an affliction of abnormality caused by witchcraft, spirits, curses, or punishment for some kind of moral indiscretion (Makhubu, 2009; Sait, Lorenzo, Steyn, & Van Zyl, 2011), and occasionally by natural causes (Mallory, 1993). Disabilities are objectified and stigmatized as either punishment from divinities, or the ancestors, or as the embodiment 29

of sin or social deviance (Sait, Lorenzo, Steyn, & Van Zyl, 2011). Hence, people with disabilities are often rejected or abandoned (Mbah-Ndam, 1998). They are also ascribed with negative characteristics such as dirty, lazy, useless, dishonest, and beggars

(Chimedza, Mpofu, & Oakland, 2000).

These negative views could have serious implications for persons with disabilities. According to Darling (2013), the works of early sociologists suggest that

“people with disabilities view themselves negatively” (p. 3). Studies that concurs with

Darling’s assertion suggest the self-conception developed by people with disabilities are a response to the interactions they have in a society that holds negative views of disability. This view was primarily derived from Erving Goffman, who had argued that individuals with attributes of disabilities are “reduced in our minds from a whole and usual person to tainted, discounted one” (Goffman, 1963, p. 3). Thus, several sociological literatures tend to link stigma with low self-esteem. My evidence is consistent with this conclusion. People with disabilities in The Gambia experience prejudice, discrimination, and isolation, but according to all the participants, one of the main challenges they faced whether their disability is congenital or acquired is the social stigma associated with their disability identity. Participants described prejudice as limiting and difficult to overcome:

Societal attitude is our biggest problem. People view someone with visual impairment or physical disability as a limitation or a pity and charity, which is the biggest barrier that people with visual impairment and physical disability faces in this country. That is why it is very difficult for things to progress on our end because of the attitudinal barriers (personal communication Colley, L. June 8, 2019).

Problems faced by the disabled community is not their impairment or as a result of medication but as a result of the society and their perceptions. It is very difficult to change the attitude of the society especially the deep - rooted ones and the traditional beliefs. Even a decade is not enough to change their beliefs but maybe targeting a generation might make a difference. Some participants commented that there are people in the society who hold the belief that seeing or meeting a blind person in the early hours of the morning causes bad luck.

There are many others who equate disability with dependency. For example, the comments by one of my participant highlights this point with clarity. The young man recalls an incident that happened as he was assisting his blind uncle navigating one of the busy streets of Serrekunda:

One day my uncle and I were along the Kairaba Avenue road walking towards Mc Caesars. As we were approaching, people were running away with the perception that he was coming to beg because he was holding a white cane. The moment people see someone with a white cane they think that the person is a beggar. Alieu [pseudo name for his uncle] is someone who inspired me a lot. Even though I assist him at times he is very competent person. When I saw him for the first time using a computer, I was baffled. I said to myself if this person is using a computer then why can’t I do what he can do because I’m not totally blind. He’s an inspiration to me so much so that I looked up to him. because today as I speak, he’s the President of the International Visitors Leadership Program (IVLP), an association under the U.S Embassy, which has more than 200 members. There are a lot of lawyers (barristers and magistrates) and dignitaries in that organization. So, looking at Alieu as that caliber of person, you won’t really look down on him (Gomez, C. D. July 10, 2019)

These prejudices are all hinderances to meaningful political and economic development.

At the same time, in some African societies, certain disabilities are depicted as positive attributes. Some revere people with disabilities because they believe they have 31

extraordinary powers that help the community. For instance, a person with one eye could be believed to have extraordinary visionary powers (Mpofu, 2000; Ingstad, 1995).

Likewise, some psychiatric disabilities are associated with spiritual gifts, as persons with such disabilities are regarded as hosting evil spirits, guaranteeing the community's safety from the same spirits (Devlieger, 1995). The belief that malevolent or good spirits can cause disability is not limited to African societies. For example, Fadiman (1997) offers a fascinating look how the Hmong people of Vietnam reveres a disability (in this case, epilepsy). If a good spirit confers power on the disabled person (e.g. the power to heal), evidence shows that disability in this regard is accepted as a positive attribute. It is important to note that these instances are not widespread; they are limited to few communities and only to certain disabilities. In some cases, such spiritual beliefs are themselves a source of problems. Few of my participants discussed how they faced with prejudice due mainly because of traditional beliefs. For example, according to one of my participants, some people also believe that individuals who are physically disabled due to epileptic conditions – especially those born with it --are possessed by jinns, and that women epileptics should not breastfeed their children. As one of the participants described:

I have been married before. I even had a child in that marriage, but he was still a baby when my husband's family took him from me and forbade me to breastfeed him. Then the worst happened. He passed away. That is why people should be very careful with the things they do. They took my child away from me when he was less than a year old, and he died (Barry, A. June 15, 2019).

These are some of the negative attitudes and ordeals that some individuals face because of their disability identity in The Gambia.

B. The Contemporary Perception of Disability

Contrary to the indigenous and traditional views of disability, contemporary

African views have been influenced by Western conceptions, mainly through modernization. Western societies’ explanation of disabilities is widely embraced, and disability is now viewed in the context of both social and medical models worldwide

(Hughes & Paterson, 1997). The emphasis on human rights for people with disabilities, which largely focuses on access to education and employment opportunities was also adopted globally. While some local NGOs operating in sub-Saharan African countries have targeted head on these stereotypes of people with disabilities, they have overlooked the untapped potential of the positive attachments people have of people with disabilities.

If used, African communities would become more inclusive and development programs can be accelerated.

In contemporary sub-Saharan Africa, NGOs and donor agencies that work with and for people with disabilities use Western values and theories to advocate for “large – scale changes” (Maclure, 2006) that encourage modernization. For instance, NGOs make extensive efforts to build modernized schools for people with disabilities (Maclure,

2006), provide wheelchairs, build curb cuts and wheelchair ramps, and provide adaptive technologies (Wilson and Lewiecki-Wilson, 2001) to assist persons with disabilities.

Therefore, Western discourse and cultural values about disability have influenced the access to services for people with disabilities across countries and localities (Mutua & 33

Dimitrov, 2001; Stone-MacDonald, & Butera, 2012). But the critical question one needs to ask is: how well is it working in The Gambia, where most roads –even in the urban centers –are still unpaved and the supply of electricity intermittent?

These large-scale efforts by NGOs across the globe, especially in sub-Saharan

Africa, have been criticized for not considering the local and cultural beliefs and values of these communities (Lord, Posarac, Nicoli, Peffley, McClain-Nhlapo, & Keogh, 2010).

As Devlieger (1995) mentions, disability in some African societies is not a problem of the individual but rather a problem of the family. This means that a good understanding of disability in Africa is in the framework of a wider social-cultural system. Any attempt to intervene or work with the disability community in Africa, and the development of programs for them, must consider the characteristics of African cosmologies and social systems. Yet, efforts towards equal human rights for people with disabilities, for most disability organizations and NGOs in sub-Saharan African countries, continue to focus mainly on education and equal employment opportunities for people with disabilities, without taking into consideration cultural values or even looking beyond these contexts.

The Models of Disability

Experts have classified disability analysis under various models though numerous overlaps are discernible in these varied models. Below are details of these models:

Moral Model

For a long time, disability was explained and understood as a punishment or a curse imposed by supernatural powers. Even though this view is now uncommon, there are still cultures that associate disability with sin (Kaplan, 2000). The model views 34

people with disabilities as the cause of their disability condition and therefore tend to have a negative impact on the individual, such as causing shame. So, people living with disabilities in communities that view disability through the moral lens tend to be ashamed of their conditions and try to hide them (Kaplan, 2000). However, in the Western world the Enlightenment ideas changed this but what happened in places in Africa have not been examined. The application of new ideas in the West, however, transformed the ways disability began to be viewed as a medical condition (Shakespeare, 2013).

The Charity Model

Like the moral model, this framework considers people with disabilities as cursed individuals because of their familial or ancestral sins (Kaplan, 1999). The model perceives disability as a personal tragedy, rendering the person with disability as an object of sympathy (Bah, 2016). According to Barnes and Mercer (2003), the priority of the model is survival rather than empowerment. This model considers people with disabilities as dependent, useless, burdensome, and shameful. It is often associated with a feeling of guilt in the individual with disability and shame in the entire family with a family member with disability, which, according to Kaplan (1999), results in people with disabilities being hidden and excluded from participating in society.

The Medical Model

Historically, in the West, disability was seen as a medical or biological issue.

Siebers (2008) notes that the “medical model defines disability as an individual defect lodged in the person, a defect that must be eliminated if the person is to achieve full capacity as a human being” (p. 3). Coopman (2003) suggests that disability from a medical vantage point entails symbolic, cultural, and political oppression of persons with disabilities. According to Linton (1998), disability studies and the disability rights movements have criticized the dominance of the medical definition of disability because it is an obstacle and because of the “reinterpretation of disability as a political category and . . . the social changes that could follow such a shift” (p. 11). Hughes and Paterson

(1997) also argue that relating and treating disability as pathology has made the bodies of people with disabilities to be mediated by medicine and therapy (p. 331).

The model views disability as a health issue caused by disease, injuries, or defects. Therefore, the medical model views people with disabilities as “abnormal’”, i.e., someone different from normative “ability.” Edwards (1997) noted that the medical approach to disability “assumes that disability is a medical condition that is inherent in the individual and that the disabled person’s functional abilities deviate from that of the normal human body” (p. 35). As such, the model is associated with health issues and conditions that warrant medical treatments or technical interventions offered by “experts” to alleviate impairment, cure, or fix disability conditions (Berghs, Atkin, Graham, Hatton,

& Thomas, 2016; Shakespeare, 2013; WHO, 2011; Yeo & Moore, 2003).

The medical model focuses on the disabled body and on the individual, which often causes their isolation and exclusion from participating in society (Shakespeare,

2013; Siebers, 2013). For Coopman (2013), the definition of disability as a medical problem disempowers and oppresses people with disabilities because the individual is seen as dependent on others and is dehumanized and objectified. The fact that the medical model concentrates mainly on the individual, while disregarding societal factors and barriers that disadvantage people in non-normative bodies, has been the most criticized aspect of the model by scholars and disabilities activists alike (Berghs et al.,

2016; Campbell & Oliver, 1996; Linton, 2013; Shakespeare, 2013; WHO, 2011). They argue that the model is individualistic, which tends to influence the consciousness of one’s body that causes negative impact in the self-identity of a disabled person (Campbell

& Oliver, 1996).

However, one main benefit of the medical model is its improvement of rehabilitation, the prevention of impairments and diseases, and the enhancement of the health conditions of people with disabilities (Linton, 2013). For Linton, the model has been beneficial for the health of disabled people and has even saved lives. However, scholars, disability activists, and people with disabilities themselves have realized that the medical model, which emphasizes ongoing physical impairment, created and maintained the suppression of people with disabilities in society (Campbell & Oliver, 1996; Mji,

Gcaza, Melling-Williams, & MacLachlan, 2009; Shakespeare, 1993, 2013). According to

Thomas (1987), the model interferes with their ability to function fully in the society.

Susan Wendell (1996), a disability right activist, argues that 37

It would be as well as a distortion of people’s lives, to erase or ignore the everyday, practical, experienced limitations of people’s disabilities simply because we recognize that human bodies and their varied conditions are both changeable and highly interpreted. …We need to acknowledge that social justice and cultural change can eliminate a great deal of disability while recognizing that there may be much suffering and limitation that they cannot fix (pp. 44-45).

The medical model contributes to the reinforcement of stereotyping, discrimination, and prejudice against people with disabilities within society. This is because much development intervention work has focused on the medical model, which tends to impair the outcome of the intervention process (see Yeo & Moore, 2003).

Yeo and Moore (2003) suggest that development intervention should not only focus on the medical model but also consider the social model (discussed below) more, especially when doing cross-cultural development work. By using the definition of the medical model, the development interventionist only considers the physical impairment, thus viewing people with disabilities as people to be pitied and tending to focus on what the individual cannot do and cannot be (Humpage, 2007). Therefore, when the medical model or approach is the emphasis in NGOs’ disabilities intervention work, “issues of the right to full inclusion and participation are not addressed” (Yeo and Moore, 2003, p. 2).

Because of their physical appearance, i.e., their obvious impairment, people with disabilities are perceived as ‘different’ and are therefore stigmatized.

Stigma. According to Goffman (1963) and Crocker & Quinn (2000), an individual who is stigmatized is one who is identified as having some kind of discrediting flaw that leads others to set him or her apart as different, abnormal, devalued, and not quite fully human. For Goffman (1963), stigma can be observable and hidden; those with observable stigma are “discredited,” whereas those with hidden or less apparent conditions are less likely to be discredited. The stigma theory proposed by Goffman suggests that individuals who are associated with such flaws usually internalize the stereotypes and negative evaluation of others, causing them to be ashamed and to have low self–esteem (Goffman, 1963).

However, other scholars (Crocker & Quinn, 2000; Marshak, Seligman, & Prezant

1999) argue that self-esteem is situational, and that the assumption that stigma leads to lowered self-esteem is not always true. According to Marshak, Seligman, and Prezant

(1999), people without disabilities tend to project their feelings onto people with disabilities by assuming that they would feel inferior, bitter, and perpetually frustrated.

For them, this assumption persists even though there has been evidence contrary to it. As a matter of fact, most people with severe disabilities integrate their disabilities condition as part of their identity (Marshak, Seligman, & Prezant, 1999).

The Social Model

The social model of disability emphasizes the social factors that contribute to the constraints and barriers of people with disabilities within the community. This model tends to distinguish between “impairment” and “disability.” The social model, according to Shakespeare (2013), states that disability is the social barrier caused by impairment of 39

the body and limitation. It is social roles and physical barriers that create disabilities

(Berghs et al., 2016; Shakespeare, 2013; WHO, 2011). So, as a result of the efforts of the disability community, and disability activist and scholars who have long criticized the medical model, a new meaning of disability was conceptualized; the social model was developed by the disability community themselves (Linton, 2013). Linton (2013) states that this aimed to give them control over their own lives. The core idea of the social model is that people with disabilities are socially oppressed. Hence, the model was developed as an argument to fight global social oppression of disabled people

(Shakespeare, 2013; WHO, 2011).

The model assumes that people with disabilities are poor, powerless, and are perpetually stigmatized (Charlton, 2013). Charlton (2013) argues that culture and belief systems tend to influence the oppression of people with disabilities. He expounded through customs, traditions, religions, and other acts that sustain a culture, people with disabilities are oppressed because they are seen as abnormal and pitiful.

The International Classification of Functioning Model

In 2001, the WHO officially endorsed the International Classification of

Functioning Disability and Health (ICF). IFC constituted the discourse on the concept of disability as a medical and social phenomenon (Ingstad, & Eide, 2011). As such, the disability discourse has changed from “bodily and individual shortcomings, to the sociocultural and physical barriers to participation” (Ingstad & Eide, 2011, p. 4).

Shakespeare (2013) contends that IFC is an attempt to create a “biopsychosocial” model to integrate the medical and social model, which are two currently conflicting models. 40

ICF defined disability as "the interaction between the environment and the person with an impairment" (WHO, 2011). This IFC definition did not suggest or give sufficient attention to the subjective aspects of participation (Hammel, Magasi, Heinemann,

Whiteneck, Bogner, & Rodriguez, 2008; Imrie, 2004).

In 2006, the UN Convention on the Rights of Persons with Disabilities

(UNCRPD) defined disability as persons “who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (p. 4). This definition further encompassed the different forms and notions of disability. Ultimately, the 2011 World Report on Disability (WRD) defined disability as an umbrella term for

“impairments, activity limitations and participation restrictions, referring to the negative aspect of the interaction between an individual [with a health condition] and that individual’s contextual factors, [environmental and personal factors]” (p. 4). The attempt to conceptualize an objective meaning of disability continues to be a challenge because of the lack of subjective balance and the absence of individuals with disability from in the discourse (Shakespeare, 2006).

Another study that informs this dissertation is Stephanie Coopman’s (2003) work titled Communicating Disabilities: Metaphors of Oppression, Metaphors of

Empowerment. Coopman (2003) discusses how “communication mediates the disability experience” (p. 337) by emphasizing that the way we define disability frames how we identify it. She identifies six metaphors to make her point and to show how these

metaphors oppress or empower people with disabilities. Of the six metaphors she discussed, three inform this dissertation. Coopman describes these metaphors as:

1. Disability as cognition – focuses on the influence of attitudes toward disability or

individual differences in personality traits that influence disabled-nondisabled

interaction, moving away from objective notions of disability to subjective ones.

2. Disability as culture views persons with disabilities as forming distinct cultures or

co-cultures, underscoring the empowering potential of disability as a cultural

identity.

3. Disability as politics recognizes the importance of empowering relationship in

public and private discourse (Coopman 2003, p. 337).

Disability and Development

Research shows that the majority of disabled people in the world live in low and middle-income countries (World Health Organization [WHO] & World Bank, 2011).

Current disability studies show that one in every seven persons in the world are disabled and about 80% of them live in developing countries (Drame & Kamphoff, 2014). Most of them live in abject poverty because they have limited formal education and lack employment (Biegon, 2011; Charlton, 1998; Kachaje, 2011). Majority of people with disabilities are not only impoverished, but they also experience powerlessness, social exclusion, marginalization, and denial of amenities and privileges (Ndlovu, 2016).

According to Hussey, MacLachlan, and Mji (2017), people with disabilities frequently report being denied medical care or receiving substandard care; they remain the most marginalized and understudied population in global health (WHO, 2011). Moreover, they 42

are visible in almost all African cities and towns walking about or lined up on the streets begging for alms.

While their impact across the continent has produced mixed results, NGOs have been playing an active role in advocating and intervention work aimed at helping people with disabilities (Nega & Schneider, 2014). They provide resources, direct local projects, and support community development programs all over the African continent (Jasor,

2016). NGOs have been active in working with local communities in The Gambia. This dissertation intends to observe one disability organization in The Gambia: The Gambia

Organization of Visually Impaired (GOVI) and it’s communicative practices working with people with disabilities.

The Development of the Disability Rights Movements and Disability Organizations

In the 1970s, people with disabilities began a social movement that transformed the prospect of disability rights (Barnartt & Scotch, 2001; Mji, Gcaza, Melling-Williams,

& MacLachlan, 2009; Shakespeare, 1993; WHO, 2011). This movement by people with disabilities was not only to claim their human rights but to also demand their inclusion, participation, and integration into society (Barnartt & Scotch, 2001; Campbell & Oliver,

1996; Shakespeare, 1993).

Numerous thought-provoking studies have shown what these disability rights movements were like, the advocacy they carried out and the factors that gave rise to their emergence. Among these studies, the most insightful is perhaps Barnartt and Scotch’s

(2001) well discussed book. In Disability Protests: Contentious Politics 1970-1999,

Barnartt and Scotch (2001), argue that the civil rights and women’s movements set the 43

stage for the mobilization of people with disabilities for political action. Another situation that influenced the movement was the Second World War, which led to the increase of disabled young people (Barnartt & Scotch, 2001).

Inspired by the fact that people with disabilities were demanding their human rights, the international community, “through the agency of the United Nations (UN),

[took] a clear position to give disability a high priority status in the development agenda of emerging economies” (Ndlovu, 2016, p. 30). The UN declared the year 1981 as the

International Year of Disabled Persons. This declaration encouraged people with disabilities to join together and was very instrumental in the formation of disabled people’s organizations all over the world (Campbell & Oliver, 1996; Shakespeare, 1993;

WHO, 2011). Since then, the international community has put in place “international, regional, and national instruments aimed to enhance the quality of lives of persons with disabilities” (Ndlovu, 2016, p. 30).

Historical Overview of Initiatives to Protect and Promote the Rights of People with

Disabilities

The UN spearheaded global campaigns to improve the lives of people with disabilities, beginning with the Article 1 of the Universal Declaration of Human Rights that was adopted by the United Nations General Assembly in 1948. The article states “all human beings are born free and equal in dignity and rights” (UN, 2016). The UN commemoration of 1981 as the International Year of the Disabled Persons highlights the growing concern of the international community about the human development and rights of the disabled. In September of 2000, the Millennium Development Goals (MDGs) were 44

adopted, which aim to work towards reducing poverty and to increase the equity and living standards of people in the world. Although its agenda did not specifically address disability at the time, it later became clear that to achieve the eight MDG goals, people with disabilities needed to be mobilized and empowered (WHO, 2011). Research has shown a high correlation between poverty and disability (Mitra, Posarac, & Vick, 2013).

Evidently, disability is an issue for developmental intervention and support (Mji et al.,

2009; WHO, 2011).

In 2006, the Convention on the Rights of Persons with Disabilities (CRPD) was introduced, which aimed to change people’s perceptions, attitudes, and approaches towards disability. It also seeks to promote the full inclusion and participation of people with disabilities within society with rights and obligations, rather than being perceived as a group subject to charity and protection (United Nations General Assembly, 2007). Also, the World Health Organization (WHO) collaborated with the World Bank to publish a

World Report on Disability in 2011, aiming to provide programs and policy guidelines to improve the lives of people with disabilities globally (WHO, 2011).

In May 2013, the World Health Assembly requested that the World Health

Organization WHO develop a comprehensive disability inclusive development act for

2015 and beyond. In April of 2014, the WHO global disability action plan for 2015-2021 was formulated and adopted, with the theme “better health for all people with disability”

(WHO, 2015). This global disability action plan was aimed to improve the health, function, and wellbeing of people with disabilities (WHO, 2015). One of its main objectives is to ensure that the barriers to accessing health care and related services are 45

removed and to improve access to health services and programs. To achieve this objective, the WHO requested all its member countries to implement and adhere to the measures designed in their proposed action plan (WHO, 2015).

According to Ndlovu (2016), at the regional level in Africa, similar instruments that aim to improve the living standard of people with disabilities include the “African

Charter on Human and People’s Rights, 1990, and the African Decade for Persons With

Disabilities 1992” (p. 31). Ndlovu (2016) notes that in the South African region, these instruments are further conceptualized. For example, in the form of protocols and standards, the Southern African Development Community (SADC) recognized these rights.

In Africa, several countries have signed the CRPD and have ratified the protocol in their national legislation to ensure the protection and promotion of the rights and interest of the people with disabilities in their states (Africa-USCID report, 2010). These countries include Senegal, Mali, Nigeria, Kenya, South Africa, Tanzania, Uganda,

Madagascar, and Malawi (Africa- USCID, 2010). Other African countries have signed the convention, but they have not actually ratified it in their constitution. In total, twelve

African countries have neither signed nor ratified the convention in their national legislation, which seems to indicate that they do not consider or prioritize the rights of people with disabilities. Some of these countries include Zimbabwe, Chad, Angola,

Eritrea, Equatorial Guinea and The Gambia (Africa-USCID, 2010).

However, in some of these non-compliant countries such as The Gambia there are clauses in the constitution that protect people with disabilities. For instance, the Gambian 46

constitution specifically states that “disabled” or “handicapped" persons are protected against exploitation and discrimination, especially in accessing health services, education, and employment (The Gambia Constitution, 1997; USICD, 2010). Further, the Gambian constitution outlines that in any judicial proceedings in which a disabled person is involved, the procedure should consider the condition of the individual (The Gambia

Constitution, 1997, p. 28). Although the Disability Bill is drafted, it has still not been passed into law by the National Assembly of The Gambia (personal communication,

Secka, Y. July 20, 2018). Consequently, in The Gambia, people with disabilities have formed organizations such as NGOs to protect and promote their fundamental rights and freedoms. These NGOs also strive to advocate for the ratification and inclusion of the

Persons With Disability Act Bill to be included into the Gambian constitution.

Persons with disabilities and supporters of the CRPD form organizations that fight not only for the protection and promotion of fundamental rights and freedoms of all persons with disabilities, but also strive for the inclusion and ratification of The Person

With Disability Bill.

Non-Governmental Organizations

NGOs have been in the forefront of development work in low-income countries, and they perform an important function in facilitating health and economic development in sub-Saharan Africa (Mann, 2015; Nega & Schneider, 2014),). Some of these NGOs are now viewed as partners of the government in the countries in which they work. Over the years, different kinds of non-profit organizations and NGOs have appeared in sub-

Saharan Africa, concerned with either providing services or advocacy work for 47

marginalized groups. Although much research has been done on NGOs and development in sub-Saharan Africa, and there has been a significant emphasis on marginalized populations in development projects, few if any of these projects have been on individuals with disabilities or The Gambia (Grigorenko, 2008; Harada, 2011;

Umeasiegbu, Diallo & Gere 2018; Wally, 2009).

Since the 1970s, International NGOs have become active in West Africa, exercising a peculiar and ever more pervasive form of nongovernmental rationality.

These organizations fill the gap by delivering aid relief and supplementing the state- centered development approaches that became widely popular in these developing nations (Mann, 2015, p. 172; Nega & Schneider, 2014). They provide much-needed resources, steering local projects and supporting community development programs all over the African continent (Jasor, 2016). NGOs tend to wield great influence and control in executing their intervention programs, and they consider themselves as experts in what they do. As Mann (2015) notes, in the Sahel region of Western Africa, NGOs are on the move.

It is against this backdrop that this dissertation not only focuses on how people with disability perceive their disability identity, but also examines how disability NGOs in The Gambia perceive the identity of the disabled. This study focuses on the NGO

GOVI because it was amongst the first disability NGOs that were most established in The

Gambia and has a long history of intervening and assisting the disability community.

Additionally, having access into the organizations as a researcher was feasible because I know an individual who had worked in GOVI. 48

Summary of the Chapter

In this chapter, I gave a review of the literature relevant to the study. I reviewed the literature on symbolic interactionism, the disability studies literature, the disability and development, and the literature explicating the formation of the disability rights movement. The review of the literature supports the need for further research into the disability identity experiences in sub-Saharan Africa and how NGOs are linked to that story.

In the following chapter, I discuss the studies that inspire my methodological and theoretical perspectives. I will describe my method, a description of the ethnographic approach, the criteria of my data procedure, sampling strategy and collection, how I entered the field, and a justification for using this method given my assumptions and research questions. The chapter also discusses the trustworthiness and validity of the study, as well as the limitations of the study.

Chapter 3: Method

Qualitative research methods, and the ethnographic approach in particular, foster deeper understanding of participant’s thoughts, perspectives, and lived experiences.

Qualitative researchers incorporate comprehensive methods of data collection and analysis to ensure in-depth results and understanding (Lindlof & Taylor, 2011).

Employing the qualitative ethnographic approach calls for multiple data collection methods, including interviews, observations, and the analyses of relevant documents.

This type of multiple source data collection methods helps communication researchers triangulate their research findings across these sources to ensure validity of the data

(Barbour, 2008; Lindlof & Taylor, 2011). It also enables the researcher to give a rich and

“thick description” of the data (Geertz, 2008).

Using the ethnographic approach is suitable for this study since it is a place-based study that involves fieldwork. Over the years, communication scholars have been using ethnographic approaches to engage and study the needs of our social world (Barge,

Simpson, & Shockley-Zalaback, 2008; Bowen & Graham, 2013; Dutta & Harter, 2009;

Robson, 2012; Simpson & Shockley-Zalaback, 2005). Tedlock (2003) characterizes ethnography as an “ongoing attempt to place specific encounters, events, and understandings into fuller, more meaningful context” (p. 125), which emphasize and seek to combine “research design, fieldwork, and various methods of inquiry to produce historically, politically, and personally situated accounts, descriptions, interpretations, and representations of human lives” (p. 125). According to Dewan (2009), ethnography makes it possible for social scientists to uncover relationships that may not be obvious at 50

the first glance. It also helps to shed light on what is not known and tease out the obvious

(Fassin, 2013) and give us a better understanding and meanings of the phenomenon under study. Using ethnography allows the researcher to “formulate a pattern of analysis that make reasonable sense out of human action within the given context of a specific time and place” (Fife, 2005, p. 1). Hine (2000) argues that ethnography is “appealing for its depth of description and its lack of reliance on a priori hypothesis […] it offers the promise of getting closer to understanding the ways in which people interpret the world and organize their lives” (p. 42). My study agrees. The ethnographic and dialogical approach of speaking with participants allowed me to obtain significant data that can be used to “test, advance or explain empirical assumptions” (Wilson and Chaddha, 2009, p.

2).

My methodological approach paved a way to pursue dialogue with my participants, which Bakhtin (1981) refers to as the ideal of human relationship. Since interaction creates meaning, using these qualitative methodologies not only allowed me to learn continually with my participants but also to use their voices to share their stories, which is a great way to foster inclusive research and partnership. This is crucial for me because I believe the “researched” must fully collaborate with the researcher in the negotiation of meanings (Sangasubana, 2011), particularly when it involves the lived experiences of marginalized groups, such as disability culture.

Moreover, since the research is a place-based study, which involves fieldwork in

The Gambia, employing the ethnography approach is appropriate. It enables me to explore what Ellingson (2009) describes as a “wondering [that] enables you to explore 51

options through the duration of qualitative projects as new opportunities, insights, and relationships develop” (p. 74). By doing so, my participants and I can reflect, negotiate, and make sense of their stories and experiences together.

Lindlof and Taylor’s ethnographic approach informs my methodological choice for this study. First, before anything else, I kept in mind their premise, which recommends that interviewers gather as many information about the phenomenon and the group of people they want to study and use the information to design the best possible interviews. Therefore, doing a pilot study in June of 2018 enabled me to gather more information about my interest group. I also drew some inspiration from the suggestions of

Lindolf and Taylor (2011) on how to do a “successful participant observation” (p. 136), from the adaptation of roles, and being involved in tactical observation, to writing fieldnotes.

Specifically, this research focuses on people with physical disability, disability

NGOs, and family members of people living with disabilities. Focusing on these three target groups ensures that the study capture different viewpoints of how people with disabilities make sense of their identity in The Gambia.

Data Collection

The data collection process for this dissertation project took place in The Gambia for three months and was based in the urban areas, especially in the communities around

Banjul, Kanifing and the Greater Serrekunda area. The study employed three methods of data collection: participant observation, in-depth interviews (an individual interview and a focus group interview), and relevant documents. Participants for this research project 52

included people living with disabilities, family members of people living with disabilities, and employees of GOVI.

Procedure in Data Collection

As proposed by Lindlof and Taylor (2011), one of the first tasks before conducting ethnographic research is to find a gatekeeper. Even though I am a Gambian and I am familiar with the society, I did not have credible ties with the disability community. So, prior to conducting a preliminary study in the summer of 2018, I contacted a former college colleague who is currently working for the Association of

Non-Governmental Organization in The Gambia (TANGO), which is the umbrella organization for all NGOs operating in The Gambia, to help me get in touch with officials in the disability NGOs. Through him I was able to obtain the contact information of leaders in several disability NGOs. So, I exchanged multiple emails with the director of

GOVI, and I was eventually able to gain consent and access into the organization in June of 2018 to conduct a pilot study.

Sampling and Participant Selection Criteria

A stratified purposeful sampling was used to recruit participants for this study. I chose stratified purposeful sampling because it helps examine the variations in a phenomenon (Patton, 2002). The samples for this research include 1) people with physical disability, 2) family members of individuals living with physical disabilities, and

3) employees of disability NGOs. This is to ensure that I capture different voices and perspectives about what it means to be identified as a disabled person in The Gambia. As

Lindolf and Taylor (2011) puts it, ethnographers recruit particular “persons” as a sampling unit for interviews because they have had experiences that are vital to their research question, or they possess specific kind of knowledge, or because of the stories they have to tell.

Interviewing people with disabilities is the most crucial for this study because I want to focus most of my attention in talking to people living with physical disabilities, since the goal of this study is to include their stories and highlight their voices in the analysis I provide. It is also important to understand the context and perspectives of family members of people living with disability. While family members are not directly affected, they are indirectly affected in other ways. For example, they also experience stigma and marginalization (Bah, 2016). They also have both directly and indirectly experienced discrimination against their disabled family members. Therefore, they are worth interviewing, as their perspectives add weight to the study. Moreover, the information from the employees of GOVI is immensely impactful for this study. For more than two decades, GOVI has been present in The Gambia, working and advocating 54

for the rights of people with disabilities in The Gambia. Since then, GOVI employees have been interacting with and advocating for the disability community, and getting the viewpoints of some of these employees about the concept of being a “disabled” sheds light on how people with disabilities experience difference within the Gambian community - in fact, many of GOVI’s employees including the Director are individuals with disabilities. In essence, collecting data from these three different samples helps provide better insights for the study because each of these groups gave me a broader understanding of varied perspectives.

Participant Recruitment

Individual Interviews. Interviews are considered one of the best methods to gain understanding of the social world (Denzin & Lincoln, 2011). According to Esterberg

(2001), the interview method is at the heart of social research and probably the most popular method of gathering data about social contexts. For my pilot study, I focused only on interviewing individuals with physical disabilities. Five of my participants were recruited through GOVI, and the other three participants were recruited through

“snowball sampling.” Snowballing “consist of identifying respondents who are then used to refer researchers on to other respondents” (Atkinson & Flint, 2001, p.1) and is suitable for qualitative research using interviews. According to Tracy (2012), snowball sampling is a good technique for reaching hard to get or hidden populations. Therefore, for the dissertation research, I used the same procedure to recruit new participants.

In terms of the number of participants, Guest et al. (2006) argues that twelve (12) interviews in a homogenous group is all that is needed to reach saturation. For this 55

reason, I attempted to interview at least 4 participants from each identified group but I ended up interviewing eighteen (18) participants with disabilities – 6 with visual impairment, two (2) with leprosy, and the rest (10) are all physically challenged. I interviewed 6 family members living with people who are physically challenged, and 4 employees of GOVI. I had 28 participants in total for the individual interviews.

For this study, I did in-depth interviews using a semi-structured protocol. Using this technique gives interviewees freedom to express their opinion and ideas, while enabling the researchers to gather all the information they would like to know but that cannot be learned through observation alone (Esterberg, 2001). According to Lindolf and

Taylor (2011), in-depth, semi-structured interviewing approaches can be useful in letting participants open up in telling their stories. When conducting the individual interviews, the same protocol and interviewing questions were asked to each participant and the interviews lasted between 45-60 minutes. In total I have 1,265 minutes of interviewing.

The interviews were all voice-recorded after seeking consent from the participants.

While collecting data, I had numerous informal conversations with the staff of

GOVI and members of the disability community. According to Lindolf and Taylor (2011) in doing ethnographic research unstructured interviews do occur and are usually spontaneous and unplanned discussions that happen in the field. Whenever these conversation or interviews occurred, I noted down the responses and subsequently transferred them into my field notes. For Lindolf and Taylor (2011), it is common for researchers in the field to ask questions and ignite conversations about specific procedures,

actions, and topics that they come across. The information gathered in these conversations is extremely useful and informative.

Focus Group. Focus groups can be defined as “small groups of people with particular characteristics convened for a focused discussion of a particular topic”

(Hollander, 2004, p. 606). According to Lindolf and Taylor (2011), the rationale for using the focus group method is to quickly gather the viewpoints of as many people as possible about a topic. Furthermore, using focus group interviewing as a method ensures that individuals find the meanings of their own actions in the reactions of others (Morgan,

2012). For Morgan (2012) the interaction that occurs in focus groups involves all elements of mind, self, and society. He views interaction as based on shared meanings that are created and negotiated by the participants in the course of their interaction.

Jansick (2010) suggests interviewing is communication between two or more individuals during which they exchange information and construct the mutual meaning about a topic.

While doing the pilot study, I did not use the focus group method because prior to doing the preliminary study, I was only interested in individual interviews. But after the pilot study, I realized that having a group interview would help my participants identify and clarify their views more as opposed to the individual interviews (Kitzinger, 1995). As

Tausch and Menold (2016) suggest, “The group functions as a promoter of synergy and spontaneity by encouraging the participants to comment, explain, disagree, and share their views” (p. 1). Besides, as other scholars state, in a group process, participants share their experiences and voice their opinions, which does not occur during individual interviews (Carey & Smith, 1994; Stewart & Shamdasani, 2014). This is because the 57

format of a focus group is a social setting, which may be more ecologically valid

(Albrecht, Johnson & Walther, 1993).

So, for this study, I conducted a focus group interview involving 4 people with physical disabilities. All participants in the focus group were recruited through the help of

GOVI. It was interesting to see how the group interacted, shared, created, and negotiated meaning of the topics discussed. The individuals in the focus group already knew each other. Thus, it was easier for me to coordinate the meeting. According to Crang and Cook

(2007), it is an advantage for participants in a focus group discussion to know each other already because it not only helps participants to be comfortable with each other, which facilitates a more natural “conversation like” discussion, but it also allows the outspoken participants to help those who are reserved to open up during the discussion.

The same questions for the individual interviews were used to guide the discussions of the group interview, and the interviews lasted for about 106 minutes.

Participants chose the location of the gathering. The focus discussion was audio recorded.

Participant Observation. Aside from interviewing, I also did participant observation. Ethnographic research warrants researchers to engage in activities – with the group being studied to “yield relevant information, and to create records of that interaction required for subsequent phases of the research project” (Lindolf & Taylor,

2011, p. 134). Conducting a preliminary study in June of 2018 was a good decision because I was able to gain their trust and establish a good relationship with the organization and some members of the disability community. So, during my actual field - work I spent 3 months, 5 hours a day, and 5 days a week observing and participating at the GOVI main branch in Kanifing. In total I spent about 300 hours in the field and wrote about 132 pages of field notes.

I observed some of their activities but did not assume any formal organizational role. This was mainly because, as a researcher, I did not want to impose myself by asking to take up a specific role. But, as I had acquainted myself with the staff and the surroundings during my pilot study, I found myself more comfortable members of the staff. This closeness that I developed with them allowed me observed GOVI’s activities.

Drawing from the literature about disability research in other African countries and based on my current knowledge of the situation in The Gambia, I was able to offer some suggestions. I was informed that the disability NGO groups usually organize sponsored walks (or processions) for people with disabilities to raise funds, but unfortunately no sponsored walk was organized before I finished the research and left The Gambia for the

United States.

While observing GOVI’s activities, I sought consent to record some of the events.

I also took pictures with consent when necessary in order to have detailed caption of these events. Through all of these I took notes, which I later wrote up as field notes every afternoon in order not to miss any specific details, and in accordance with Lindolf and

Taylor’s (2011) suggestions of noting down all aspects of interactions.

Document Analysis. In addition, since an ethnographic method was applied in this study, I triangulated between data sources, and this included observing, interviewing, and utilizing published data in the form of reports produced by GOVI. In other words, the writings, statements, or records of GOVI were extremely useful because the use of multiple data collection sources provides a more ‘convincing and accurate’ analysis

(Casey & Houghton 2010; Yin 2017).

Published data in the form of reports, newspapers, and any form of relevant archival documents was also utilized to add useful information to the study. According to

Lindolf and Taylor (2011) document review reinforces the participants’ verbal accounts and triangulate data. Therefore, by collecting data from documents, I was able to gather more information to see whether written government and NGOs documents reflect other information from my interviews and observation notes (Thomas & Magilvy, 2011). I also had a personal research journal to record individual actions and reflections (which was about 48 pages) as well as collective actions for my field notes.

Instruments in Collecting Data

Several scholars have offered numerous techniques for gathering or collecting data on social networks or organizations, including surveys and questionnaires and 60

structured and semi- structured interviews. For this study, a structured interview would not have yielded much information. This is because, as Tracy (2013) contends, structured predetermined interview schedules lack flexibility and depth (as in surveys and questionnaires). With this approach, the researcher is urged to stick with the scripts and not probe or pick up on nonverbal cues. Most importantly, structured interviews do not encourage participants to elaborate or voice their opinion about the issues raised in the survey or questionnaire.

I used a semi-structured interview approach for this study. This was to ensure that

I asked some similar questions to all of my participants. The approach allowed me to have a set of questions as a guide, while maintaining flexibility to follow up and probe further information and explore particular themes or responses that emerged (Tracy,

2013). This form of interview is helpful to reveal personal testimonies and recollections of participants and, in this case, individuals with disabilities and those who live and work closely with them, which include family members and disability NGO workers. The open-ended nature of such interviewing strategies makes it possible for respondents to generate, challenge, clarify, elaborate, or re-contextualize understandings of the issue they are engaged with (Blee & Taylor, 2002).

Furthermore, through semi-structured interviewing strategies, I gained insight into the individual and collective visions, imaginings, hopes, expectations, critiques of the present, and projections of the future on which, according to Blee and Taylor (2002), the possibility of collective action rests. Therefore, more than structured interviews, the semi- structured interview method allowed me to understand how people with disabilities 61

conceptualize their identity in The Gambia. During my pilot study interviews, I used semi-structured interviewing and I found the method very effective. Some of the questions that were asked during the pilot study include: 1) How would you describe your relationship with others in the society. 2) What kinds of communicative practices do you think are experienced by people with disabilities? 3) How do you negotiate the communicative challenges that surround you? 4) What role do you think the disability

NGOs are playing in the lives of individuals with disabilities? The information gathered from these kinds of in-depth, semi-structured questions I asked during the pilot study helped me realize and became aware that for my dissertation research, I should be asking questions pertaining to what it means to be disabled in The Gambia instead of how people with disabilities make sense of the communication practices. This is because I realized that my initial research questions were too broad. But, most importantly, I decided to change the research questions and the interviewing questions primarily because of the stories my participants were narrating. Their stories revealed the subject of disability identity – as different, oppression, devaluation, pride, and appreciation. This means that, whereas people with disabilities experience the treatment of difference and are sometimes stigmatized because of it, in other instances it becomes a subject of appreciation and positive interest.

The preliminary data suggest that most of my participants experienced or reclaimed their difference as a source of individual or shared identity and pride.

Consequently, I decided to focus specifically on the experiences of people with disabilities in reference to their identity as a differently abled persons living in The 62

Gambia. Some of the interviewing questions asked for my actual dissertation data collection were: 1) What does disability means to you? 2) How has disability shaped your life? 3) Tell me about your experience living as a differently abled person in the Gambia.

4) How are the identities of differently able people constructed within the Gambian community?

Reflexivity

As a researcher, two of the most important things to consider while conducting field research are accessing the community and gaining their trust (Hammett, Twyman, &

Graham, 2014; Lewis, 2015; O’Reilly, 2012; Tracy, 2012). I chose to do this research in

The Gambia, as I can make use of my ethnic background and can have an easier entry and access to the field without much difficulty. One of the advantages I have as an insider is that I speak several Gambian languages though I am not very fluent in Mandinka, which is the dominant language in the country. The languages used during the data collection process were English, Wolof, Fula and Mandinka. According to Davis (1999) it is important that a researcher understands the participants’ language in order to collect quality data. For this reason, participants trusted me, but critical to all this was my ability to build rapport with people. However, I went with the mindset that I might be considered and treated as an outsider within the disability community. But through my former college colleague I was connected to many within the disability community. I also knew that my position as an outsider could give me different perspectives on matters that my interviewees might take for granted.

I chose to study the disability community in The Gambia because it is a group that

I think would possibly benefit from my research, which aims not just to collect information from them, but to construct something beneficial in return. According to

Habermas (2006), good research aims to promote changes in the social environment by looking at social construction, social process and human relation. Moreover, as people with disabilities are often ignored and excluded from many aspects of mainstream life

(WHO, 2011), and have so many narratives imposed on them, I want to examine their experiences and also shed light on how the communication that surrounds them shapes their lived experiences. Also, I have always been interested in NGOs activities and intervention work. In the early 2000s, I interned briefly at an NGO that was engaged in adult literacy program in The Gambia.

I also maintained a reflective diary. According to Houghton, Casey, and Shaw

(2013), a “reflective diary should provide the rationale for decisions made, instincts and personal challenges that the researcher experienced during research” (p. 15). My research diary helped me to keep record of my observation in the field, as I recorded whatever I thought was necessary.

Data Analysis

Before analyzing the field notes, I made sure to read them thoroughly to identify preliminary important points and themes. By doing so, I was able to gain good view of how the research was taking shape. According to Lindlof & Taylor (2011), this type of reflective thinking can be channeled into “in-process analytic writing” (p. 244). Emerson,

Fretz, and Shaw (1995) called these processes “asides, commentaries, and in-process 64

memo.” They described “aside” (p. 101) as a brief, reflective and analysis that explains or raises questions about the happenings or processes describe in a fieldnote. A

“commentary” (p. 101) is defined as elaborate reflection on certain events or issues.

Using this technique helped me in developing some conceptual categories from the collected data.

After conducting the interviews, the next step was to transcribe them word for word. According to Tracy (2012), “one of the most important parts of transforming embodied interviews into usable data is transcribing – or creating typewritten records from audio recordings” (p. 177). But first I listened to the recordings of the interviews multiple times to identify every word, “pace, sequence, intonation, pauses, interruptions, talk-overs, and volume” (Tracy, 2012, p. 178), as these are all valuable features that can aid analysis of my data. For my pilot study, I had a total of 105 pages of typewritten transcription of all my eight (8) recorded individual interviews and almost twenty (28) pages of field notes. I started transcribing while I was in the field in The Gambia and completed the process after returning to the United States in August 2019. After this process, I did not go further to analyze the data because it was a pilot study. Most importantly, I did not want to have too much preconception of the data before doing the dissertation research. However, even though it was a pilot study, I knew that all the data I collected during this process would be valuable. So, I did every bit of the transcription exercise with diligence, knowing that it would be useful in the analysis of the dissertation research.

For my dissertation study, I followed the same process as I did for the pilot study by listening to the audio recordings of the interviews multiple times to have an overview of the data. I then transcribed them word by word even before leaving the field and came up with 480 pages of transcripts. The next step after the transcription process was to read over the data while listening to the interviews again to identify recurring comments, themes, and relevant codes. First, I analyzed the data by hand before using the data analysis software, Nvivo to identify varied themes and codes.

There are three stages that are important in grounded theory for analyzing qualitative data. These stages include: 1) open coding and in vivo coding 2) axial coding and 3) the dimensionalization process (Charmaz, 2000; Glaser & Strauss, 1967; Lindolf and Taylor, 2011; Strauss & Corbin, 1990; Tracy, 2012). The first stage involves “coding for as many categories as possible from the data” (Lindolf and Taylor, 2011, p. 250).

After identifying the main idea and themes by coding them, the codes that are identified are categorized. Lindolf and Taylor (2011) define categorization as “the analytic process of sorting units of data with respect to properties that they have in common” (p. 246). I did open coding and in vivo coding (Lindolf and Taylor, 2011) simultaneously by going through my field-notes, transcripts, and documents line by line and categorizing chunks of data based on coherent meaning to open up inquiry (Strauss, 1987). According to

Charmaz (2014), “by coding, we raise analytical questions of data from the very beginning of data collection” (p. 4). Open coding helps to examine the data closely and assign words or phrases that capture their essence or meaning (Tracy, 2013). At this stage, I created a code-book for this process to “develop a systematic data display that 66

lists key codes, definitions and examples that are to be used in the analysis” (Tracy 2013, p. 191). Five dominant categories were identified based on my initial coding. These themes consisted of - a community reliant group; a self-reliant or economically independent group; an employment and working group; a skills trained and educated group; and an advocate and a middle class statues group.

The second stage was axial coding, which is to integrate and reshape the categories and give them deeper meanings (Lindolf and Taylor, 2011, p. 252). This process is about creating new sets of codes in order to make connections between categories. The third and final stage of the process is the “coding, categorization and conceptual development” (p. 252). This process is called the dimensionalization process.

According to Lindolf and Taylor (2011), at this stage “we examine each construct – again by constant reference to the incidents that make up the construct- and try to tease out the key variations (dimensions)” (p. 252). They suggest this process is as far as the “analysts can go in coding, organizing and explaining the data” (p. 252), as it is the saturation stage.

Once I finished analyzing the data by hand, I used a data analysis software program, NVivo12, to analyze and code the original transcripts again. This process organized, synthesized, and categorized the themes into interpretative concepts (Tracy

2013, p. 194). Lastly, as described in chapters 5 and 6, I constructed and interpreted my claims and findings for this study. So, out of the five themes, three main themes were identified after the analysis of the data - and these themes include a) identification as

community reliant (b) identification as self-reliant and employed, and c) Identification of an assertive group.

Trustworthiness

To achieve validation in qualitative inquiry, researchers must evaluate multiple forms of evidence (Lindlof and Taylor, 2011). These include thick description, triangulation or crystallization, and member check or member validation (Lindlof and

Taylor, 2011; Tracy, 2012). For this study, I did “triangulation” by collecting data using multiple methods and forms of evidence. I looked for convergent data in my field notes, interviews, documents, and other qualitative evidence in order to confirm or disconfirm the interpretation of the study. I used thick description when explaining, contextualizing, and interpreting my data.

Summary of the Chapter

In this chapter, I discussed the methodological approach for the study and also provided a description of the qualitative research methods. I also outlined the justification for using an ethnographic approach as well as discussing the criteria for selecting my data and entering the field. The trustworthiness and validity of the study is also explicated in this chapter.

In the following chapter, I will give an overview of my research setting, The

Gambia. I also briefly describe a non-governmental organization that works with the disability community in The Gambia, GOVI. Like most sub-Saharan African countries, the Gambia’s population is characteristically young and diverse. As a country, the state faces many development challenges including widespread poverty, limited access to 68

quality health care and education. The physically disabled, who constitutes roughly 1.6% of the country’s population, are arguably some of the most marginalized groups.

Chapter 4: Overview of The Gambia

Research Setting and Population of the Study

Lindolf and Taylor (2011) writes that in any qualitative research study, “one often begins by identifying the sampling unit – sites, setting, people, activities, events or time- of greatest important for a study” (p. 110). The context of the study was The Gambia, which is located in the Western region of Africa. The Gambia is a country of approximately two million people. Nearly, 30% of the country’s population lives around the capital city, Banjul (Wright, 2010, p. 210). Many of these are young people between the ages 5 and 30. The life expectancy rates for Gambians are low compared to that of developed countries. According to Wright (2018), “life expectancy at birth was forty-two years in 1990, up from thirty-two in 1960” (p. 216). Politically, the country was under a very repressive government between July 1994 and December 2016, when the Gambians unexpectedly voted out that government, and after a brief political uncertainty, the country transitioned back to democratic rule.

This tiny West African state is surrounded by Senegal on all sides except on the narrow Western coastline where it faces the Atlantic Ocean. Over the years, The Gambia and Senegal were among the most stable countries in that West African region.

Figure 1. Map of The Gambia (from Wikipedia)

In the 1990s, hundreds of refugees from Sierra Leone, a smaller group from

Liberia and Guinea Bissau settled in The Gambia. There are also sizeable Senegalese,

Guinean, Malian, Mauritanian, Ghanaian, Indian, Lebanese, and Nigerian immigrants living in the country as economic migrants. While many of these people own shops or work as teachers or doctors, a vast majority of them are involved in the informal sector where they compete with the average Gambian for wages. The Gambia is predominately

Muslim but also contains a thriving Christian community. It is also ethnically diverse, with about ten different ethnic groups.

Disability in The Gambia

In an estimated population of 2.1 million, more than 1.6% of The Gambia’s population is constituted of persons with disability as a result of mental, sensory, or physical impairments (Nabaneh, 2019). Until 2003, disability statistics were scanty in

The Gambia because they were collected through household surveys. But, a module on disability was included for the first time during the census taking in The Gambia in 2003

(GBoS, 2013). In 2013, the second census to include a module on disability was taken, and it was also the first time the Demographic and Health Survey (DHS) was conducted with a module on disability in The Gambia (GBoS, 2013).

According to the 2003 Population and Housing Census results, visual difficulty was the most prevalent type of disability (0.9%), followed by physical disability (0.5%).

However, in the census of 2013, the prevalence of disability in The Gambia shows that physical disability is the highest prevalence (0.4%), followed by visual difficulty with

(0.3%) (CBoS, 2013). The 2013 census results show that the overall prevalence of disability is 1.2%, compared to 2.4% in 2003. Disability in The Gambia is slightly higher among men (1.3%) than women (1.2%) though the 2013 census shows that there is a relatively higher proportion of women with disabilities (50.7%) than males (49.3%), reflecting that there are more women than men in The Gambia.

Between the 1990s and early 2000s, several potentially relevant new policies were formulated in The Gambia. These include the National Health Policy, National Family

Planning Policy, National Population Policy, National Reproductive Health Policy,

National Nutrition Policy, National Policy on Advancement of Gambian Women,

National Education Policy, and the National Youth Policy. However, according to the

Voluntary Services Overseas (VSO), a British not-for-profit international development organization, the initiatives of these policies in their earlier version paid superficial attention to the needs and concerns of people with disabilities. The policies were mostly concerned with the protection and services for the general population and fell short in addressing the special needs of person with disabilities (VSO, 2010). So, over the years, 72

the Department of Social Welfare, Educational Department, VSO, and Sight Savers

International collaborated with the Disability Persons Organizations (DPOs) to create strategies and programs at the macro level to address issues like mainstream education, capacity building activities, rehabilitation, institutional building for enhanced service delivery, and empowering people with disabilities.

Disability NGOs in The Gambia

The Gambia Federation of the Disabled

The Gambia Federation of the Disabled (GFD) is the “umbrella organization that represents the disability sector and brings together all Disabled People Organizations

(DPOs) and People With Disabilities (PWDs) in The Gambia” (GFD, 1999, p. 2). The

GFD was created in 1999 to help advocate for the empowerment and protection of people with disabilities, as well as to encourage, support, and monitor activities done by stakeholders within the disability sector (GFD, 1999).

GFD also seeks to improve the living conditions of all people with disabilities by attempting to change the perceptions about people with disabilities. One main function of

GFD is to provide information and educate the Gambian society about disability issues.

The organization also actively lobbies with government officials and service providers and is an important contact for collaboration with international organizations (Gambia

Federation of the Disabled, 2016).

There are eight disability NGOs or DPOs in The Gambia that are registered with

GFD. These include The Gambia Organization of the Visual Impaired (GOVI), The

Gambia Organization for Learning Difficulties (GOLD), The Gambia Association of the 73

Deaf and Hard of Hearing (GADHOH), The Gambia Association of the Physically

Disabled (GAPD), The Gambia National Paralympic Committee (GNPC), Rural Support

Organization for the Disable (RSOD), Association for the Mentally Disabled of The

Gambia (AMDG), and the National Union of Disable Youths (NUDY). Some other DPOs that are not registered with GFD as part of the federation include Foundation for Disabled

People in The Gambia, Save the Children With Learning Difficulties, Bundung Association of the Disabled and Their Children (BADAC), Second Home Foundation, Hart House

Home for Children With Learning Difficulties, and Young Advocates for the Rights of the

Disabled (YARD).

Disability Services in The Gambia

In The Gambia, the provision of services for people with disabilities has been inadequate (CBoS, 2016). Despite the existence of the several disability NGOs that provide services in local communities, the services they provide have not made much impact in addressing the problems that people with disabilities are facing in The Gambia

(CBoS, 2016). These NGOs aim to improve the lives of people with disabilities by promoting and advocating for human rights and equal opportunities. Yet, data show social biases against people with disabilities are still prevalent, and poverty within this group continues to be evident. Why have these NGOs not made long-term impact in changing the lives of people with disabilities in The Gambia? Also, if these NGOs’ combat prejudice, stigma, and discrimination (GBoS, 2016), why do these issues still prevail?

According to a 1998 report published by The Gambia Bureau of Statistics

(GBoS), little information is known or shared between the disability group organizations that work with and for the disabled population. This means that there is inadequate communication between the public service providers and the disabled community in The

Gambia. Hence, there is limited direction and coordination between the NGOs and even with the government (GBoS, 1998), resulting to insufficient understanding of the needs of persons with disabilities among some service providers. In fact, the GBoS (1998) reported that The Gambia government is unable to grasp what the needs of the disabled community are and what rehabilitation services are available in the country. The report attributed this situation to the lack of reliable information and data. As such, the government lacks sufficient data on which to base policy and program decisions about special education, health, and rehabilitation for persons with disabilities. This information indicates that there is a communication gap between the different disability organizations and NGOs. Could the lack of communication between these NGOs be part of the reasons why there is little progress in addressing the needs and providing services for people with disability, or is it due to peoples’ attitude towards the disabled?

The data collected for this study also show that these NGOs have very limited resources and technical assistance. Because of these constraints, they lack the capacity to extend their services beyond the urban areas and few rural communities, which has caused an urban bias when it comes to rendering assistance and services to people with disabilities (CBoS, 1998). This means that people with disabilities who reside in rural areas do not have as much assistance as those in urban ones (CBoS, 1998). In fact, most 75

of the NGOs in The Gambia are located in urban and semi-urban areas and not in the rural areas (CBoS, 1998). This is reflected in written data that imply that many NGOs in

Sub-Saharan Africa do not operate in less developed rural communities (Siphokazi &

Lorenzo, 2008; WHO, 2015). Hence, data collection for this study reflects this position, since most people with disabilities that were interviewed mentioned that they moved to cities from rural areas.

Policies and Laws on Disability in The Gambia

Although, to this date there are no significant laws that fully protect the human rights of people with disabilities in The Gambia, the country’s constitution, which was last revised in 1997, does have specific clauses that attempt to do so. Through the efforts of the disability NGOs, the clauses added in the constitution state that “disabled” or

“handicapped" persons are protected against exploitation and discrimination, especially in accessing health services, education, and employment (The Gambia Constitution,

1997; USICD, 2010). Further, the Gambian constitution outlines that in any judicial proceedings in which a disabled person is involved, the procedure should consider the condition of the individual (The Gambia Constitution, 1997, p. 28). However, these clauses are superficially added because, according to several personal communications I had with my interviewees, these laws are not enforced and rarely applied.

Consequently, the disability NGOs including GOVI and people with disabilities pushed for the drafting The Gambia’s Disability Rights Bill with the goal of protecting and promoting the fundamental rights and freedoms of members of this community.

Although The Gambia’s Disability Rights Bill is drafted, it has still not been passed into 76

law (personal communication, Secka, Y. July 20, 2017). For decades, the lack of political will and support for the disability community at the government level is the likely reason for why the bill has not enacted into law. This inaction has not discouraged stakeholders, particularly the disability community, from continuing to advocate for the enactment of the Bill to be included into the Gambian constitution. In 2009, The Gambia Integrated

National Disability Policy (NDP) was drafted, as part of the Disability Rights Bill, and it has also been waiting for adoption into the constitution. The NDP consisted of key areas for policy intervention for persons with disabilities. Its main objective is to enhance care for and help people with disabilities to cope with situations and be fully integrated and functional in their communities.

The Gambia Organization of the Visually Impaired (GOVI)

GOVI is the national organization for the visually impaired people in The

Gambia. It was established in 1991 through the merging and collaboration of The Gambia

Association of the Blind and The Gambia Society for the Blind (govigambia.org, 2019).

GOVI aims to support and promote the human rights of the blind and visually impaired.

According to an advocacy and training officer, GOVI is engaged in a wide range of activities. However, one of their priority areas is education of the blind. Another area is the livelihood of visually impaired adults who do not have any form of education or skills training. GOVI also focuses on promoting the prevention of blindness, the treatment of people with eye impairments through rehabilitation, as well as advocating for people with limited or no vision to obtain equal rights and opportunities in all areas of social and economic life (govigambia.org, 2019). They also strive towards the promoting the full 77

participation of the visually impaired people in society and transforming local perceptions and understandings of disability related to vision through advocacy and sensitization programs.

GOVI’s main office is located in Kanifing, in the greater Banjul area. In total, the organization has ten structured branches across all the regions of the country: Banjul,

Brikama, Bwiam, Mansakonko, Farafenni, Basang, Wuli, Kaur, and Basse. In all these branches, GOVI have branch chairpersons and committees. The branches perform various functions and activities within the communities they serve. However, according to a staff I interviewed, not all the branches are effective due to financial constraints. In fact, the only branch that is still thriving is GOVI’s main branch in Kanifing, mainly because of its location. Importantly, within its main branch premises, GOVI operates a school for visually impaired children, a technical skill center for adults with visual impairment, a conference hall for rental and small boutique for the selling goods made from the skill center.

GOVI has great visibility in the Gambian media and its field agents are present in many districts across the country (govigambia.org, 2010). GOVI’s initiatives in The

Gambia do not only deal with the issues of marginalized communities, participatory culture, and social justice, but they also include philanthropic intervention. The organization renders services to the visually impaired by collaborating with stakeholders, communities, and family member of the blind.

Although most of the founders had not received any formal education, they believed that being educated can be socially and personally beneficial, which prompted 78

them to begin the only school for blind children in the country. GOVI has been supporting the education of visually impaired children by building a school for blind children.

GOVI’s School for the Blind

GOVI’s school for the blind is provided free to every admitted blind student. The school provides a very conducive learning environment, and adequate and appropriate teaching and learning materials for all the students at their different educational levels

(govigambia.org, 2019). According to GOVI, support comes from international NGOs, philanthropists, the Government of The Gambia, and supporters and well-wishers of the organization (govigambia.org, 2019). They provide educational materials such as Braille machines, Braille papers, stationaries, computers, talking books, tape recorders, batteries, cassettes, and sponsoring of blind children’s education. The government of The Gambia mainly assists in employing teachers to supervise, monitor, and maintain the learning and teaching setting of the school as well as providing the daily transportation of the children from their homes to school (govigambia.org, 2019). Supporters and friends of the organization also help in sponsoring students and providing breakfast and lunch because most of the children come from very poor families. Apart from the sponsorship of stakeholders, GOVI also makes efforts to sustain its program and services by earning funds by renting the conference hall located in the main branch premises in Kanifing, selling art products such as rugs, and sponsoring walks around the greater Banjul area.

At the school, students are introduced to Braille reading and writing when admitted.

The core courses of the education curriculum of The Gambia, such as Math, English, 79

Integrated Studies, etc., are inculcated into the school’s curriculum. The students receive training on Orientation and Mobility (O&M) exercise in order to move independently around the school and at home. They are also taught Activities of Daily Living Skills

(ADLS), which help them learn to take care of themselves at home. These skills include personal hygiene, dressing up, make-up, cooking, etc. (govigambia.org, 2019). Other skills that are taught at the school includes artistic and crafting skills such as basketry, rug making, gardening, and music.

Figure 2. Rugs made out of rag clothes. Photo by Marion Mendy

Figure 3. Blind students singing. Photo from: (GOVI’s website)

In 2011, an organization called Children in Cross-Fire, an NGO based in

Netherlands, funded a project called Integrating Visually Impaired Children Into

Mainstream Education. It was a three (3) year project with the agreement that the government will take it up after the three years. During this project, thirty-six (36) teachers were trained in the first phase and sixty-six (66) in the second phase. These teachers were not posted in specific schools but in specific clusters. The teacher that is responsible for a particular cluster will be visiting the schools in his/her cluster to make sure that all the children with visual impairment have access to learning materials. They also have workshops and training sessions with classroom teachers in the mainstream schools on how to take care of visually impaired students in their classes. The program is now facing several challenges, like acquiring relevant materials for the schools, especially those in the rural areas.

Rehabilitation Projects for Blind Adults

Another project that GOVI runs is a skills training center for adults with visual impairment. The organization lobbies for projects that promises to enhance the living conditions of people with disabilities through rehabilitation projects and activities. This project began through the funding of Sight Savers International (SSI) in the mid-1990s.

According to informants, the project is called the Community Based Rehabilitation

Project. It was formed to support blind people by training them to be conversant with their daily living activities within their communities. They are also trained on microfinance activities such as petty trading and taking out loans to start businesses. They are also trained in vocational skills like rug making, tie and dye, soap making, vegetable gardening, and animal fattening. The first phase of the project started in the North Bank

Region of the country, and the phase covered the West Coast and Kanifing Municipality.

Figure 4. Skill center for rug making. Photo by Assan Sarr

After two decades of sponsoring the project, SSI moved to Guinea Bissau to give their support. But, according to an official of GOVI, before the project ended, there was a memorandum of understanding between Sight Savers International, GOVI, and the

Department of Social Welfare that the latter should take up the partnership where they stop when SSI leaves. But this has not been the case because there has not been much support for social welfare as expected. However, even when the project phased out, the activities still continued through the support of philanthropists, international donors, and other partners. So, there are still members who were beneficiaries of the project that are still engage in those activities.

Challenges of GOVI

The challenges faced by GOVI are many, and these include funding, capacity development, and the lack of parents/family involvement and commitment in supporting family members who are enrolled in GOVI programs. Funding is GOVI’s biggest challenge. Lack of funding makes it difficult for the organization to attain and maintain the target they aim for the students to reach. This is because, although they aspire to train their students up to high school level, their special needs education program is only from pre-school to sixth grade, before the students integrate into the mainstream school system to complete their education. According to a personal communication with an informant, at this point the GOVI Resource Center hand these students over to the government

supported Integration Education Program (IEP) who supports the students with itinerant teachers who have some training on special education.

Nevertheless, GOVI is responsible for providing the supplies, such as Braille machines, tape recorder, cassettes, batteries, and other educational materials for the students. Because these materials are expensive, the GOVI Resource Center finds it difficult to sustain the provision of these schools supplies for both their school for the blind and the mainstream schools. According to an informant, most of the students who are sent to mainstream schools cannot cope and thus are forced to drop out of school because the schools have few trained teachers to assist visually impaired students. The mainstream schools have limited special needs equipment, and there are no special needs accommodations for the students. Also, the students are not well oriented to settle well in the school environment. Furthermore, a standard curriculum is used even when there are students with special needs in the class, and because there are limited itinerant teachers, the students find it hard to manage.

Another constraint is that GOVI depends on donors to provide educational materials, and it is not forthcoming since the supplies of educational materials are constantly needed and expensive. There are cases where three (3) school children share one Braille machine in a class, which delays the children’s education. The organization also faces problems in the maintenance of computers and Braille machines. These machines are also costly to maintain and repair. According to an informant, when a braille machine needs repairing, it has to be transported to the GOVI main branch office in Kanifing because there is only one technician in the area who could fix the machines. 84

So, if a machine has a slight problem in Basse, which is about 362.9 kilometers to

Kanifing, it takes a while for the machine to be transported. The repair process can also take two (2) weeks. Imagine the number of days the student using the machine will lose in the course of repairing the machine.

Additionally, there is a major capacity building problem for the staff. Before the

IEP started, the staff teaching these students developed their skills through hands on experience. Although, some teachers have been trained through IEP, the only training the staff and teachers obtain is through school-based workshops and training session.

Teaching children with any form of disability needs teachers who specialize in special aids. As such, there is a need for capacity development of the staff. Although, the school has five visually impaired teachers who were former students of the school, more trained teachers are needed, especially after the students are integrated into mainstream schools.

This is an issue because only limited training is offered, as there is no higher institution of learning in the nation where special needs education courses are offered.

Moreover, even though students who attend the GOVI school for the blind are exempted from paying any cost, these students are deprived access since “preference is given to their sighted peers whom the parents thought it will benefit them more in the future” (govigambia.org, 2019 para 4). Children with visual impairment are discriminated against, and many parents have low expectations for them. The lack of involvement and commitment of these parents towards the education and welfare of their visually impaired children is one of GOVI’s main concerns and challenges. According to an informant, some of the parents totally depend on GOVI to provide for most of the needs of these 85

children, even things like school bags, shoes, transportation, and feeding and taking care of their health care service; if a child is sick, GOVI takes him/her to the hospital.

Successes of GOVI

Over the years, there have been numerous successes for GOVI. The organization has achieved positive results in advocating and ensuring that visually impaired children in

The Gambia attend school. Many former students of the institution are now economically independent. Some are now teaching for the institution or working in the media as a journalist. Others work in the civil service, some serve in the judiciary as interpreters or clerks, while others are musicians or pursing their education at the University of The

Gambia to become lawyers. But, more outstandingly, a few have traveled abroad to attain their PhD and are showcasing their talent overseas (govigambia.org, 2019). Yet, currently in The Gambia, there is one magistrate and one Member of Parliament who are visually impaired.

GOVI has also contributed immensely in sensitizing a good section of the

Gambian population about disability and these efforts are impactful. GOVI has great visibility in the Gambian media and its field agents are present in many districts across the country (govigambia.org, 2010). Because of some of GOVI’s efforts, some people with disabilities are more accepted and included than others within the Gambian society.

This is not based on the local beliefs or views of the type of impairments they have but due to the how individuals with disabilities view or handled their self-identity as a disabled individual. Three main categories were identified based on how individuals with

disabilities perceive themselves or experience their disability identity, as well as how they think the society perceives them.

Summary of the Chapter

This chapter gave a brief overview of The Gambia, which is the site of the study, and the background and historiography of GOVI. I also gave a review of the disability NGOs in the Gambia, as well as reviewed the services and disability policies and laws in the Gambia. The challenges and successes of GOVI were also discussed.

GOVI and its counterparts lack the capacity to extend their services beyond the urban areas and few rural communities, which has caused an urban bias when it comes to rendering assistance and services to people with disabilities. GOVI’s initiatives in The

In the next chapter, I will discuss the key findings of my research. The evidence points to the fact that a good number of the participants I interviewed describe their experiences and the communication of those around them as sometimes positive, empowering, and approving. The level of support they receive from family members, friends or the society as well as their religious beliefs can help them augment their level of self-esteem.

Chapter 5: Findings

Disability does not mean inability (Personal communication, E. Colley, July 12, 2019).

The purpose of this research is to evaluate the successes and constraints of the communicative practices of the disability GOVI as advocate and source of support for members of Gambia’s disability community. In doing so, the study hopes to gain insight into how individuals with disabilities construct and make sense of their experiences of difference in reference to their disability identity. In this chapter I present themes that emerged through the ethnographic method of participant observation, in-depth interviews, and data analysis procedure previously described in chapter 3. The data analyzed consisted of twenty-eight (28) individual interviews, which included sixteen

(16) men and twelve (12) women, and one (1) focus group interview with 4 female participants as well as field observation of the disability organizations. Themes were identified based on the coded data in terms of their frequency, intensity, and relevance to the study. The following research questions were asked.

RQ1: What is it like to be a person who is differently abled in The Gambia, and how are those identities constructed?

RQ2: What specific communication challenges do people who are differently abled in

The Gambia face?

In order to understand the discussions and stories narrated, and the voices that are represented in the individual interviews that provide part of the data for this study, I will give descriptive background information about some of the individual interviewees’ and

their stories. This is not only to show the diversity of my participants, but to also indicate that I am aware of how factors such as the type and extent of physical impairment, family attitude, educational background, religious background, and other social factors help to contextualize the participants' experiences and reflections of how they perceive their identity as differently abled individual. Hence, it impacts their perception of what

‘disabled person’ means and therefore their sense of self. All of the participants narrated incredible stories, but, unfortunately, I could not possibly include synopsis of all their stories. While it was my goal to identify, compare, and contrast the diverse experiences of individuals with different conditions and forms of disabilities and their life circumstance, I also sought to look for commonalities in their experiences.

The participants are all treated with confidentiality, and their real names are concealed in this description, except for a couple of individuals who wanted me to use their real names – this is because they identify themselves as activist and would like their voices heard. Therefore, aliases are used to represent most of my participants.

Description of Participants

Participant 1: Ebrima Leigh, Male, 49 years old

Ebrima is a 49-year old male who was born without any form of disability but became paralyzed by losing his legs when he was three (3) years old, as a result of an injection that was given to him when he got sick and was taken to the hospital. Ebrima tells his story of dealing with discrimination and finding job because of his physical disability and wheelchair usage. He was born and raised in a poor family in Brikama, and he grew up as the only male child in a household with three (3) other female siblings. He 89

describes his parents as being at times warm and caring, but at other times unconcerned and quite distant and detached in handling his condition. Ebrima is not formally educated, and, although he was sent to Dara (Quranic School) very late in his life, it was for a very brief period of time. He eventually learned repairing transistor radios and earned a certificate in bicycle repair through an NGO working with individuals who are physically disabled. Ebrima uses a wheelchair and owns a small business selling mobile phones and prepaid cards for telecommunication companies, in a small wooden kiosk.

Ebrima’s story within my dataset clearly shows that he is disabled not because of his physical impairment but by society’s lack of acceptance of his physical difference.

Like most of my participants, Ebrima’s perspective about his disability identity is primarily one of indignation because of society’s negative attitude towards him. His story serves as an incisive commentary on a culture that values physical normalcy and equates it to productivity, while stigmatizing and rejecting those with visible physical difference.

Participant 2: Ndey Yassin, 55years old

Ndey Yassin is an activist, an individual who started from a modest background and rose to a position of power and influence in the Gambian society as a policy maker and senior government official. She completed high school and later attended Dorton

House School for the Blind in the United Kingdom. Born in 1964, Ndey is a native of

Banjul, who tells her story of growing up as a visually impaired individual, within a stable, loving and very caring and protective middle-class family environment. Her older brother was born blind, and her younger sister was also born visually impaired. She was constantly restricted from playing and running around with other kids. Growing up, she 90

always thought she is normal because she did not know what vision means – she thought everyone else was like her. Her parents never told her she could not see. Yassin liked to play like every other kid but always knocked things over, unlike the other kids. But more frustrating for her was when others called her mother to stop her from playing, anytime she was playing ‘jump rope’ or ‘tag’ with other kids in the neighborhood. This was just one among many examples of her parents' determined effort to shield her from the reality of her identity.

But the dominant theme in Yassin’s story is that of an individual triumphing over adversity. She narrates her story partly to prove that she has triumphed and partly to inspire and motivate others like her. Although she has been fortunate in that compared to many others – she was nurtured, educated, and trained to be independent from an early age – she also gradually realized she is differently abled. However, she attributes her success thus far largely to her parents and family members, as well as her determination and positive thinking. Her story is similar to Ebrima’s in that her narrative leans towards locating, accepting, and owning the disability, and the responsibility of managing it, and not letting society or the social structures dictate to her.

Participant 3: Kebba Samba, 64 years old

Kebba is an elderly man, born in 1954; he tells his story about leprosy, a disease that affects his skin and disfigures his hands and feet. He limps when he walks; he has limited use of his hands; and his face was a little disfigured too. Kebba was in his late 20s when he was diagnosed with the disease that quickly engulfed his entire body. Barred by the stigma that the disease carries, he was alienated by his fiancée, who he courted for 91

several years and was to marry her few weeks before he was his diagnosed. Ultimately, the attitude of his family members also changed toward him, and the community eventually isolated him. Prior to having leprosy, Kebba lived a poor but content and a happy life as a farmer in a village called ‘Maramba Gai,’ and never went to school.

Kebba describes his years of struggling to accept his fate, to construct a positive self –concept as he faces numerous barriers and social judgments, while maintaining an optimistic mindset as a Muslim. He speaks frankly about the impact of others' degrading, dismissive, and condescending messages, and his constant struggle for acceptance and full inclusion. Although his story is one of dismay, he explicitly critiques societal attitudes and treatment of people with disability. His story is unique in that it leans toward society’s repugnant attitude that pushes people with disability to have low self- esteem, feel worthless, seclude themselves and eventually become suicidal – as it was in his case, before he was rescued. Now, Kebba sits from morning to afternoon around

Westfield Junction, in Kanifing, as a beggar.

Participant 4: Adama Barry, 36 years old

Adama provides and introspective and reveling account of accepting and managing her disease that paralyzed her whole left part of her body, including her face, since she was age nineteen (19). Like most others with disabilities in The Gambia, she does not know the medical term or name of her condition. Coming from a very poor background, she was never taken to the hospital for treatment when the disease began, rather she was using herbal medication for her condition. She has three (3) siblings, has never been to school, and never worked in her life. Each day, she sits in the streets as a 92

beggar. Adama has three kids from an arranged marriage to a man who was also a disabled person, who sadly passed away. As a disabled woman, she recounts her ordeal of being badly treated, molested, and deprived of breastfeeding her kids.

Adama’s story is extremely insightful as she articulates the connections between her experiences living as a disabled individual and how cultural assumptions, expectations, and judgments about her disability identity prevented her from being productive in life.

Participant 5: Fatou Gaye, 42 years old

Fatou’s story of growing up and living as a physically disabled person, is meaningful like all the other participants’ stories. She was not shielded from the reality of her condition as long as she could remember. Born in 1976, in Sanjal in a village called

Kumbija. She became physically disabled at an early age – losing her legs through an illness. She lost both of her parents and became an orphan around the same time she fell ill. She grew up in a dysfunctional household with her aunt.

Fatou’s story is filled with her honest and head-on grappling with her condition over the years with faith and determination. Without a stable, loving, and supportive family environment, and with very little assistance, within a society that at the time made very little accommodation (such as accessibility to education) for disabled children, Fatou turned out to be dependent, like many other individuals with disabilities. However, in

2017 a Gambian businessman and philanthropist sponsored her and twenty-nine (29) other women with disabilities to do entrepreneurship training called EMPRETEC. She received a certificate and GMD 10,000 (Gambian Dalasis) for a business startup. Now, 93

Fatou owns a kiosk, selling prepaid cards for mobile phone companies, cigarettes, mints, and other condiments. Yet, she still accepts alms and charity from people as she sits on her wheelchair beside her kiosk.

Fatou, reflects and tells her story by taking a critical stance on a wide range of disability rights and issues and situating disability identity as a wholly social construction.

Participant 6: Jainaba Hydara, in her early 40s

Framing her story as fate, and as the will of God, Jainaba is strongly convinced that her becoming ill and being paralyzed at the age of eighteen (18) was God’s will.

Married to a visually impaired man through an arranged marriage by their parents,

Jainaba and her husband are full-time beggars and do not have any other means of earning funds for survival. They sit at the entrances of different mosque to receive alms.

Jainaba’s story reveals the tales of many other people with disabilities whose faith plays an important role in their acceptance and endurance of their disability conditions. In her story, she tells of how she profoundly embraces her fate as a disabled person, and how her faith as a Muslim made her find peace and tranquility within herself and her surroundings despite the stigma and prejudice. With six able-bodied children, she and her family often receive condescending messages, disapproval, and frowns from people around. But she sees her children as blessings from God, and she is optimistic that her children will be successful in the future despite the hardship they face raising them through begging.

Emergent Themes

In the following section, I discuss three themes that my data highlights. These three themes emerged through coding my transcribed data, a process that is detailed in chapter 3. Briefly, the process by which the themes discussed in this chapter emerged consisted of transcribing all of the interviews and data; getting deeply immersion in my data; writing down and typing up data segments that seemed relevant to my investigation; naming, labeling, and grouping the data segments, producing preliminary characteristics, and categories; continual coding of data segments, reexamine my data categories, and integrating the categories and asking in-depth questions while constantly comparing my data. Additional questioning and comparison of the themes prompted me to integrate the themes and develop a theoretical response to my research questions.

Analysis of these stories revealed three dominant themes representing the various ways that people with physical disabilities portray their experience as a differently abled person in reference to their disabled identity and their communication with society. The themes are (a) identification as community reliant (b) identification as self-reliant and employed, and c) Identification of an assertive group. These themes were identified through the identity narratives, which focus on stories of participants themselves and their lives, as they construct accounts, which encompass their potential and statues within the Gambian society. For each of these categories, the data analysis revealed significant thematic references that the participants make while portraying their experiences of living as an individual with a disability identity in The Gambia. These include (1) their

orientation of ‘self’ being identified as disabled; (2) their experiences of difference and

(3) the characterization of their disability identity through the communication of others.

Participants who are family members or caregivers, and employees of GOVI gave account of their experiences, beliefs, and aspirations, as well as their perspectives of the societal attitude towards the disability community in The Gambia. But, most importantly participants with disabilities narrated and gave numerous references of their experiences living as a differently abled person in The Gambia, which include their interaction with others in the community, as well as memories of their thoughts, feelings, and reflections on their experiences. They describe their experiences and the communication of those around them as sometimes positive, empowering, and approving. However, they also remembered and described in their stories some painfully negative and disapproving experiences of difference, especially through the verbal and non-verbal communication of others around them. During their discussions, participants with disabilities try to make sense of their difference or disability identity, the communication that surrounds them, and why society treats them differently.

In characterizing their disability identities and experiences, only a few of my participants (7) described their experiences as fluid, while majority of my participants

(21) portrayed their experiences as complex and somewhat fixed and stable. Therefore, in the three themes identified in this study, there are overlapping perspectives as many participants tell their stories.

Identification as Community Reliant

The participants categorized under this theme describe struggling with frequent and intense experiences of feeling degraded and devalued. This is not only because of their physical difference but also because they are also dependent on society especially on their families. They comment on experiencing their different selves as a source of pity, inferiority, worthlessness, and alienation. In their experience of difference, the participants portray their stance towards difference as helpless and passive, seeing themselves as oppressed, belittled, and disrespected as a result of their identity as a differently abled person. A participant commented that, even though she faces insults in the way people communicate to her through their words and actions, she still has to go out and beg in order to take care of her daughter:

I have to go out each day and face insults. Some days are better than some, but I still dread going out every day. It is not easy to always beg people. Some give us alms and others don’t. Sometimes some people will not even respond when you greet them, as if they are better than you. Even if they don’t have anything to give us, at least let them be friendly to us, and we will appreciate it. Begging is no one’s dream. We want to be like any well- off person, wake up every day with enough to solve our problems. If we are helped, we will stop the begging. If we are trained with any type of skills or employed to do something, [it] is better than begging on the street (Hydara, J. June 20, 2018).

Participants reported being subjected to name calling and humiliation and are viewed as unproductive and worthless, which they have internalized. They also claimed that, although society perceives their physical difference as defective and abnormal and has defined their role as beggars, begging for alms is not a role that they like doing;

rather, they have no other option. For example, one participant recalls an incident that happened to her:

As a child, I didn’t have much encounter with other people. My father doesn’t allow me to go out. He had done everything possible to cure my legs after I became paralyzed at age three (3). I am uneducated and do not have much skills because nobody taught me. Now I am a beggar, and I go from place to place to beg for alms. But I wish there is something else to do other than begging. I have to tolerate all sorts of name-calling. People do not want to know your actual name. They don’t respect us as human beings. We are not valued in this society. I don’t know… people communicate to me like I am inferior. This has always been the case as long as I can remember. They will give me alms [money] and not even look at me while doing so. At times, they put the money on the plate beside me. I believe they do not want to make any physical contact with me (Barry, A. June 15, 2019).

The participants' stories also depict their experiences of other challenges they face as they passively accept the discrimination in all aspects of their daily lives. They mentioned that accessibility to healthcare, transportation, and even accommodation is a major issue. Many of the participants do not have access to healthcare because they are poor and cannot afford the fees for the services they required. They often depend on the goodwill of family members or people from their community or healthcare workers for assistance. Some of the participants claimed that there are no primary health care services supplied for people with disabilities. The subject of mobility or transportation is one that all the participants mentioned even though no question was asked on the matter. They all agreed that, due to their identity as disabled persons, accessing transportation is a nightmare for them. This is because of the taxi drivers’ reluctance to pick up or allow people with disabilities to board their vehicle. The drivers’ only excuse is that their time

will be wasted. For example, one participant explained to me:

The taxi drivers refuse to pick us [meaning people with disabilities] up because they say that we waste their time. They tell us to go and stay at home. Some taxi drivers ask us to pay for our wheelchair. I think it is so ridiculous for them to require that we pay for our wheelchair –it means that we have to pay for our legs. Taxi drivers don’t even stop when we halt them (Gaye, F. June 18, 2019).

In another interview, the participant complained:

Drivers refuse to stop for us. They make excuses like “I cannot open the boot of my car for your wheelchair," and when they see someone else with a baggage they open it for them. The drivers are making mobility a big challenge for us. Imagine, the other day I wanted to go to Tanji. I entered a van and the apprentice took my wheelchair to the back of the vehicle; he called the driver to help him put it in the boot. Suddenly the driver came to me and told me “I cannot carry you." Could you believe that no one [other passengers] complain in the vehicle? It was as if there were not any other passengers in the vehicle (Jah, A. June 15, 2019).

Similarly, another participant recalls some of his encounters with taxi drivers:

Most times the other passengers in the taxi ignore me. Other times, they are the ones that tell the driver I am just going to waste their time. But some people are very compassionate. On one occasion all the passengers in a van got off the car and asked the driver to let me board before anyone else enters because I am also human. That was a great thing they did for me that day (Colley, Y. July 3, 2019).

The participant continued:

Now, there is a strategy that I use. I always involve abled-bodied people who are willing to help me. I would stand beside an abled-bodied person and that person would stop the taxi and tell the driver that we are together.

They discussed the fact that there is no law that protects them from such discrimination. One of the participants mentioned that some of the disability NGOs had advocated against such injustices, and because of that, government officials had made it known to the disability community that such issues should be reported to the police. Yet, 99

they believe that since it is not a formal law, they cannot do much about it. One of the participants stated:

We were informed that if any driver refuses to carry people with disabilities using wheelchair, they should be reported to the police. But I think that’s a waste of time. As long as it is not a law that is formalized, the drivers will not take it seriously. We will just continue struggling and nobody knows what might happen tomorrow. That is why I don’t feel too bad when I am mistreated in the society because they don’t know whether they will end up like us. Only then will they know how we feel right now. We will still continue to exercise patience. We can’t say everything we face in the society (Barry, A. July 8, 2019).

Participants in the Identification as Community Reliant theme also express their reliance on others to obtain their basic right of having an accommodation. According to the participants' stories, it is a struggle to find accommodation because landlords tend to consider people with physical difference are poor, unemployed, and a liability. One female participant commented on this issue and said:

Accommodation is very big challenge for us too. When you’re looking for a house for rent, the compound owners refuse to give it to us because they think we will not be able to pay it. So, we have to go with an abled-bodied man to guarantee us by telling them that ‘she is my sister and I will be paying the rent.’ If not, they will say there is no house even if there is one. That’s discrimination, and they tend to look down on us because we are disabled. That is not good (F. Gaye, June 18, 2019).

Another participant stated:

Unless I go with someone to help me get an apartment to rent, no landlord will be willing to rent me an apartment. I remember when I first moved to the place I am staying at now-- after a relative of mine helped me rent it, the landlord wasn’t too happy when he learned that I was the one staying in the apartment. Most landlords’ thinks people who are disabled will not be able to keep up with the payment of the rent (Samba, K. June 23, 2019).

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That said, these participants held strong faith, believing and accepting that their situation is caused by Allah (God in Arabic) and therefore they should embrace it.

Accounts of GOVI Employees. Participants from GOVI that were interviewed in this study were mostly able bodied – only three of the employees interviewed were visually impaired. In the narratives of this group of participants, the theme of identification as community reliant also appears in their depictions of interactions involving people from various backgrounds with visual impairment. They spoke of instances where they felt distressed, annoyed, and embarrassed because of how they are being treated as objects of pity and charity and the negative behaviors and comments of people in their communities. This is how one of the interviewees from GOVI describe his views about individuals from this theme:

In The Gambia, people who are identified as a disabled are associated with begging, charity, and exclusion, so they are treated unjustly within the society. Without any education and having been isolated for the most part of their lives, these people are also made to believe that begging is their only option. They are made to believe that, because of their identity of being physically challenge, they are incapable of doing anything productive or meaningful to contribute towards the socio-economic development of the country. But this isn’t true, because disability isn’t inability. While you have majority of the disability community succumbing to these outrageous beliefs, there are few others who are very competent and are taking great strides to break the status quo. In fact, most of the people with disability on the streets begging do not want to beg, but the reality is the social structures force them to. Of course, if they are unemployed and seen as incapable, without much self-esteem and courage to fight, they give up easily and yield to societal norms of begging and charity. Although we are making progress, it is very difficult to change the deep-rooted beliefs and attitudes of the people (Gai, L. July 10, 2019).

In his description of the situation, another GOVI employee stated: 101

People with disabilities in The Gambia are regarded as subjects of charity and their problems are not considered as issues of human rights. People with disability are not seen as people that have rights to education, health, humanity, and dignity. So that in itself is a very big challenge for us at GOVI, and whenever we push the agenda for disability rights, we’re always faced with normative challenges. Legally speaking, the laws in the Gambia are not quite disability friendly in the sense that when we want to hold the government accountable, we will not have the normative basis to do so because there isn’t a specific provision in the constitution that talks about disability rights. Efforts have been made to remedy that, but we are still lagging behind, considering the global and regional trends in disability rights (Colley, E. July 10, 2019).

The participants in this group also mentioned the importance of education in ensuring change in the condition and social strata of these individuals. Most of them also discuss the role of government and disability NGO/donors should play to change the situation of the people in the identification as community reliant theme. For example, one of the participants commented:

Education is the fundamental step in helping people with disability, because if you don’t have education as a human being, whether you’re physically challenged or not, your life chances and opportunities are quite limited and restrained (Kujabi, E. June 15, 2019).

Another GOVI participant claimed:

The point is that the resources that we have might not be quite sufficient to uplift the socio-economic circumstances or situations of all persons with disabilities given the fact that the primary obligor of any human rights issue is the government. It is the state/government that has the resources and that should invest the resources to ensure that persons with disabilities have equal opportunities like their counterparts. But the irony is, you have the state lose its obligation by refusing to invest in anything that has to do with enhancing the lives of persons with disabilities. Disabilities NGOs cannot totally change the life of any person with disability. What NGOs can do at best is to engage and advocate for the rights of persons with disabilities to be central in our national discourse, but if we want to have the notion that it is the responsibility of disabilities NGOs to enhance the socio- economic circumstances of persons with disabilities, then we are putting too much 102

burden on ourselves. That burden actually lies with the state. It is the state that acceded to the U.N. convention on the rights of persons with disability. It is the state that has acceded to the African Charter and it is the state that has the resources, that collects taxes and should distribute resources to everyone without any form of discrimination. As a disability NGO, GOVI is doing the best it can. We are doing our best with limited resources in our own little ways to support the lives of children with disabilities that have been long neglected (Bah, Y. July 25, 2019).

One of the GOVI employees with visual impairment who was interviewed remarked that The Gambia government has never done much for the disability community:

The government of The Gambia has always neglected us. We are an oversight, and that is why some people with disability still don’t have the confidence in themselves. We thank Allah when a few philanthropists in the 1970s came together to ensure that children with visual impairment like myself were sent to school. Our government never thought of educating people with disability. What they were thinking is that, ‘let their parents take them to Dara - (Arabic school) and after Dara they will be beggars to be able to feed’. The Gambia government never really catered for the disability community (Jatta, O. July 8, 2019).

During the interviews, the participants also mentioned the views that some major international donors have of the disability community, and how their perceptions and ideas obstruct their good intention of helping the disability community in The Gambia:

For the donors, I have a problem with the way they design their projects. Projects can be designed with huge amount of money, but when it comes to the implementation of the project, a very small amount reaches the affected people. When they budget for GMD 100, 000 they hire project coordinators, project managers, etc., giving these people the bulk of the money, so how much do you think will be left to help the beneficiaries? For example, if a project is design to provide loans to beggars on the street-- such as micro-finance [for petty trading], and GMD 1000 is given to few selected beggars, I bet the beggars will not stop begging for that small amount of money, which isn’t even enough to start a sustainable trade. If they compare what they get from begging on the streets and what they will earn in the prospected business, they will prefer to remain 103

beggars. Petty trading does not yield much profit (at most GMD 50 everyday), and they have families and other responsibilities. So, therefore the sustainability of these projects is in questions. The project designer should put into consideration the beneficiary and how much they are going to get out the project, because you cannot tell someone to leave a particular thing without giving the person an alternative that is more favorable and valuable than the former ( Jallow, A. June 8, 2019).

Identification as Self Reliant and Employed (Economically Independent)

A second theme that emerged in the participants’ story is the characterization of their disability identity as self-reliant and independent. Contrary to other participants in the identification as community-reliant theme, who are subjected to oppression, participants identified as Self-Reliant and Employed tend to perceive their identity as disabled differently. While it is an inevitable and unquestionable fact that, as individuals with disabilities, they do face some limitation; they however defy and refuse to accept the society labeling them as inadequate.

Many participants claimed that their disability does not define who they are. For this group, physical disability does not equate with the impairment of the self. They do not see themselves as a person with disability, as it does not really bother them as much as societal attitudinal barriers. They insisted that their physical appearance is not what makes them disabled, but society not empowering them. As one of my informants noted about the importance of education, which can be provided through sensitization or providing greater access to schools:

Some of us are more qualified than some of these so-called abled-bodied people. So, education is the fundamental step in helping us. We should be given the chance to take the drivers’ seat in any capacity, and they will see what we can do (Secka, N.Y. July 20, 2019).

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A participant commented:

I am not bothered much about people’s behavior towards me. I know people don’t think the same way. Allah created me this way, so if you belittle me, then you are belittling Allah because he created me like this. He is the same one who created you the way you are. My father once told me, whenever you see people putting on rags, respect them. They could be the best among people. But most people don’t mind. They look down upon people with disabilities and treat them badly (Saine, S. June 15, 2019).

Another participant made this comment:

Whenever someone behaves in a bad manner to me, I just see the person as an ignorant person. My disabled friends used to ask me, "why do you always say that if we don’t have today, we will have tomorrow?" I told her Allah is great. We will have whatever we are destined to have. This is what people fail to understand. Only the ignorant chase away the beggars. When I tell some people they are ignorant, they think I’ve insulted them, but the real truth is that they don’t know much regarding humanity (Ceesay, F. July 20, 2019).

Here, the participants’ stance towards their physical difference and the negative way their difference has been communicated to them within the Gambian culture is one of resilient and defiance. They portray themselves as adapting to and accepting the reality of their physical difference and impairments, but they rejected society’s judgments, rules, and structures that are set for them. In this perspective, their limitation, inaccessibility, and the society’s exclusionary social structures are questioned or challenged. Although, they view their disabilities or impairment condition as a natural source of limitation to some extent, they do not consider their disability a restriction or condemnation to all of life’s activities. Participants in this group refuse to internalize the negative cultural attitudes about their identity as disabled and do not portray themselves as profoundly

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helpless, dependent, devalued, or ashamed as in the identification as community-reliant theme.

The participants' stories reveal their experiences of accepting their difference as integral part of their life, as well as how they refuse to succumb to society’s rules and structures. For example, a participant recalls his lack of acceptance by society because of his paralysis illustrated by his use of a wheelchair. Yet, his portrayal of embracing his self-identity and learning to stand against the odds is telling:

Gambians believe that a person walking with two legs is everything. I have everything. I work to earn a living and I drive my car. I am more than fifty (50) years old, but I am capable of doing so many things that perhaps my age mates are incapable of doing. I am proud of myself, I don’t know of another person, but I am proud of myself, and what I have achieved. I don’t tolerate discrimination or pity from people. I am confident and I am not afraid to be part of anything I want to be part of. Over the years, I have done a lot of things to educate the Gambian public that disability does not mean inability. I play the drum and other African musical instruments such as the ‘xalam’ and ‘balafon.’ God has blessed me with talents. I am versatile in different ways. I represented the country in a competition where the competitors were supposed to display their skills in playing musical instruments. I was the only wheelchair user and when I went on stage, people were fascinated and surprised because I played three different instruments at the same time (Sinyan, A. July 12, 2019).

The participant goes on to recall his attitude and dealings within his community.

He recounts his fumbling efforts as he interacted with community members to establish trust and acceptance:

I am involved in different activities whether or not it is against the will of the organizers of that activity. As long as it is for the community, I will be part of it- no one will isolate me because of my disability. I do not beg for alms -although people tend to give me alms even when I do not ask for it. I work hard to earn a living. I wanted people to respect me for who I am. The Serrekunda community appreciates me a lot -- they do not consider me to be disabled because of how active and positive minded I am so, I am 106

very popular here. However, there are people with disabilities who lack self-esteem because of the way they are treated in society. They feel ashamed or are afraid to mingle with people in society because of their disability identity /physical condition (Sinyan, A. July 12, 2019).

Other participants narrated of their struggles and perseverance to overcome society's rules and structures of what they should become:

I have gone through a lot and perhaps disabled persons have not suffered the way I did. I had a twin brother who was well and kicking and then suddenly one day he died. When he died, I got sick and then paralyzed. I used to cry so hard when my mates were going to school and I was sitting, incapable of doing anything at the time. I realized that the sitting wasn’t going to do any good, so I resorted to crawling to go to school. I would crawl to go to school and after schools closed, I would wait till sunset and crawl back home. I had no wheelchair at the time. But, because of my resolve, a family member (a cousin) volunteered to be carrying me everyday to school. When I got heavier, he could no longer carry me. Then another person volunteered to carry me. This second person also tried very hard but couldn’t also carry me at the latter part because I was heavy. I want back to crawl to school but my mother realized that it wouldn’t last because my hands and feet would get swollen at some point. So, I assured her that I would try and that was what I did until I completed Serrekunda elementary school. When I started secondary school the principal of the school said he was going to take very good care of me and treated me specially because of my condition, but I refused vehemently. I am the type of person that doesn’t like to be pitied and I can eliminate persons who pity me very easily. I like to fit in and be part of society. In The Gambia when you are disabled the first concept people associate you with is begging and exclusion. I have always rejected it and that is the reason why I went through so much just to avoid begging for my livelihood. I worked hard to benefit myself someday. It paid off after all and now I do not depend on charity from people (Sinyan, A. July 12, 2019).

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Another participant also recalls her disapproval of the begging culture:

I always tell and encourage other people like me to stand up for themselves and not to be receiving alms from people all the time. It is not good. No one would respect you. There was a time I refused to accept alms. I remember one time when I was younger, I was going out with my sister and someone gave me money, but I threw it away. My sister slapped me and asked why I refused the money and I told her that I am not a beggar and I don’t want to be one. She told me that if I don’t want the money then I should read and work hard in school. A friend also advised me to accept alms when given otherwise all the disabled people will be categorized as not wanting alms when in fact others need it. From that time, I started taking alms from people who offer it to me in good faith, not because I need it but because they want me to pray for them. But I truly hate the fact that people always associate disability to begging. Why should we be limited only to begging? We are not incapable of doing things for ourselves—we just do this differently (Leigh, E. July 8, 2019).

Characterizations in the stories of individuals in this category also reveal the

Identification as Self-Reliant and Employed theme, with participants recounting incidents in which they recall being self-reliant in life not only because of their resolve and determination but also by accepting the need to tolerate situations that were frustrating, difficult, and painful. A female focus group member believed that the support of family is the key to making all the difference in the life of individuals with disabilities. All members of the focus group agreed that the family, especially parents, of people with disabilities have a major role to play in ensuring that individuals with disability not only embrace their disability identity but also learn to be confident in who they are as a person, to be independent and challenge the norm. In some cases, the individuals remember their family members being willing to support and encourage them. For example, one participant in the focus group remembers how her parents and other family members supported her and her siblings in the early days of being visually impaired: 108

I remember my grandfather told my father the he doesn’t need to send me and my two other siblings to school because we are blind. He said we should just stay at home and beg on the streets- you know, the traditional belief especially in those days. My grandfather told father that we should take it with good faith (this is what Allah wishes). But my father made up his mind and took us to school for the blind anyway. He encouraged us and helped me to be the person I am today. My mother’s family was also very helpful. They supported her because it is not easy to take care of three blind kids (Secka, N.Y. July 20, 2019).

Another focus group member commented:

They say charity begins at home, and that is so right. When you are a disabled person, the homes you come from are the ones supposed to make the society receive, accept and treat you well. My family members are very proud of me. I am confident and proud of myself too and the reason why I am who I am today is because of family support. Family support is very important for a person because when you lack family support, you lack everything. You have nothing. As I said charity begins at home. I have reached a stage where my family is so proud of me to the extent that when they don’t see me, it’s a problem. I and my wife and kids are always included in most communal events. We are never excluded (Kah, A. July 18, 2019).

The focus group participants agreed that the ability of people with disabilities mostly depends on the support of the people close to them. They claimed that, if all people with disabilities, especially children, were given the same opportunities and encouragement as able-bodied individuals, it would give people with disabilities a better chance to support themselves as adults. One participant lamented:

The society should change their attitude in order to effect change towards people with disabilities. Parents feel ashamed to show their children with disabilities to people. They will keep them in the house. They will take them to other houses when there is a social gathering in the house. This is a big problem because I think parents that do this, signals that folks with disabilities should be excluded from social events, which is bad. I thank God my parents love me and never hide me from people. My father always asked for me when he doesn’t see me around him. Parents of disabled children should know that disability is not something their 109

children request for; it is given to them by God; if disability was a commodity nobody will buy it. When parents support their child with disability, God will help them because God will know that they have accepted it with good faith. Parents should build a social foundation for these children. I always pray for my parents for helping me to be who I am today. My mother passed away, but my father is now witnessing so many of my successes. I wish this is how parents of disabled children should be – like my parents; Parents should not make their disabled child to hate them and not want to see them. They should support them. People with disabilities do not need pity; what we need is respect (Gomez, C. D. July 10, 2019).

All of the participants in my focus group agreed that they have achieved a lot because of their family financial or moral support. They can now take care of their families and pay bills because they are employed or operating their own businesses.

Participants also claim that they try to stand up for themselves against societal injustices and do not allow anyone to disrespect them. They believe that disability identity is just a physical difference, so people should treat individuals with disabilities well and appreciate them as their fellow human beings.

Many of my participants focus on how they strive and force themselves to beat the odds and discuss times when they were upset at or critical of cultural prejudices and the social construction that stigmatized them because of their physical difference. In their reflection and memories of their experiences of being treated differently because of their disability identity, they express anger at the Gambian society that stigmatized their difference. In their narratives, they mentioned actively confronting and resisting the society’s cultural norms, attitudes, and social structures.

When speaking for this perspective, the participants characterize themselves as identifying, wrestling with and challenging the injustices that accompany their different 110

selves. Within this theme, participants question the system, rather than quietly accepting them or seeing themselves as defined and demeaning by them. For example, one participant recalls with pride and satisfaction an incident in which she outspokenly expressed resentment at what she thought was a rude and insensitive way a colleague was speaking about the disability community during one of GOVI’s elections.

There are people that are joining our organizations telling us that they want to help us, but they are not. I once had a problem with a guy during one of GOVI’s meeting. He was saying, these people are disabled, if we don’t help them, they can’t do things on their own. I was so angry that day. I told him not to say that to mislead people because he knows that is not the truth. I told him you are the one can’t do your job without us telling you what to do, because we always tell you what to do. In fact, you always leave your office early thinking we will not notice because we are blind. You know we always surprise you by telling you the time you left and when you came back. He does not even do his work efficiently (Barry, J. June 28, 2019).

Another participant recalls feeling a similar sense of satisfaction when he was able to express his indignation and object about his lack of accessibility:

During the time, I was attending the Gambia Technical Training Institution (GTTI). I used to have problems with the school. There was a time I refused to attend class because other students always had to lift me up the stairs to attend class everyday. So, one day I went to the stairs and refused to let anyone have access to claim the stair to attend class. From that time on, they changed my entire timetable and brought all my classes downstairs. There was a time, even the library had no ramp and one year before I went to study at the Management Development Institute (MDI), I confronted them that the school needs to have ramps because I had the intention of studying there. It was after my complaint that they built a ram there. So, as you can see, things are changing gradually. We just have to be assertive and keep pushing (Colley, E. July 12, 2019).

While these two participants accounts depict them as asserting themselves in some situations, often the narratives reveal the theme of identification as self-reliant or

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employed through the participants’ recognition and identification of injustices, even when unable to exert any real influence to alleviate it. One of the participants recalls his frustration, yet patience and self-control as he suffered discrimination as a result of his physical difference:

After completing bicycle repair training, I was given a certificate. I opened a small workshop near the Brikama Health Center. I was there for more than one month, without seeing any client because people tend to belittle me thinking that I cannot repair bicycles because of my disability. They passed me and take their bicycles to other repairers. One day, a man came to me and I repaired his bicycle. That was when I started having customers because they saw what I could do (Bojang, E. June 10, 2019).

The participant increasingly recognized the attitude of the society towards individuals who are identified as disabled (even if skilled and qualified), as wrong and unjust. He recounts many examples of being treated unfairly. For example, he gave an account of how he was treated unfairly at his place of work:

Since my workshop was not doing so well and I could not find a job after a long time searching, I decided to volunteer at the department of Social Welfare. A philanthropist came to the office one day and saw me. He asked about my welfare and I told him I was a volunteer not directly employed. He then decided to sponsor and paid me GMD500 (the equivalent of $10) every month. In 2002 one of the senior administrators at the department returned from his training/ course in Ghana and asked me whether I was now employed. I replied no. He said nobody does voluntary job for twenty (20) years. He then spoke to the director to employ me. At the time, there was an opening for a position but it was given to some other guy. That guy was not much interested in this kind of job (repairing wheelchairs) because he is always absent. Later on, he then quit the job. That was the time I was given the job as a wheelchair repairer (Bojang, E. June 10, 2019).

Other participants mention although they have worked so hard to beat the odds and become productive to contribute towards the nation's development, social attitude

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and structures continued to pull them down. One participant in particular described his ordeal as he struggled to overcome the social structure that limits people with disability identity, and how his efforts were constantly hindered by the same social structures he was trying to overcome:

After high school, I studied electronic engineering for three year at the Gambia Technical Training Institute (GTTI). After I completed my studies I applied for a job in many places, but I could not get a job. At one point The Gambia Radio and Television services (GRTS) had vacancies for electronic engineers. So, I put in an application. I was later called for an interview and was informed that the office was on the third floor and for that reason I was not employed. I continued to apply at various offices, and after being called for interviews, they never got back to me. Eventually, I was shortlisted for a position at The Gambia Transport Services (GTS). But as usual I was not given the position. After that, I finally decided to start my own business. So, I took loans from family members to start a business (Colley, E. July 12, 2019).

Rather than being diminished and defined by the negative and prejudicial treatment they face due to their disability identity; participants recall becoming critical and angry at how they are marginalized and isolated within the community. One of the participants discussed his disgruntlement with the Gambia society:

Gambians are like that. They prefer to give jobs to abled –bodied repairers than people with disabilities like me. They discriminate against us thinking that we cannot do the job like the others (abled- bodied). They should consider and have at the back of their minds that this man (the participant) is a disabled who is striving to earn a living, and help me by giving me jobs instead of the others (abled-bodied). Think about it, people who are not disabled can do other forms of work, while I can only do one, because to my disability and what I have been trained to do. But I tell you they prefer giving it to my competitors because they think those people can do it faster. They should know that doing the job accurately is way better than being fast (Bojang, E. June 10, 2019).

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Participants also show resentment of treatment that are blatantly unjust and discriminatory towards the rights of people with disabilities. For example, some of the participants recall their anger and frustrations on a sudden and temporary law that was placed by the Gambian authorities that restricted their movement, thus infringing on the rights of the disability community. A participant gave an account of her views of the arrests:

I remember being stopped by the police as I was going to work that morning. They told me to go back home or I will be arrested. I told them I was going to work but they did not believe me. This is because we have been subjected to an object of charity so much so that anytime they see us they think we are out begging. They said it was a directive from top officials that all beggars should sit outside the Mosques or in front of their houses. I started a heated argument with them. I told them that, with everything we are going through, it was disheartening that the government is being insensitive. I was not angry about the fact that they stopped me. Instead, I was furious about what was happening to the disability community. I know a lot of people with disability are poor, so if they are arrested for begging what else can they do? Begging is how they survive (Jobe, Y. July 20, 2019).

Identification of an Assertive Group

Family members and caregivers of people with disability depict their counterparts as being assertive. When speaking from their perspectives, these participants characterized people with disabilities as having sound mind, courageous, charming, loving, funny, and above all full of faith, yet at other times they express anger against society’s discriminatory practices. Countless numbers of the disabled are also politically or economically active in society, seeking to transform either their lives or the political landscape of their state. The participants, in their reflections and narrative, also express being overwhelmed, angry at the cultural prejudice. 114

However, few of these participants confessed that at some point of their experiences they had negative views and were doubtful on their own part about the capability of their family members with disabilities. They also mentioned at times experiencing discrimination and isolation because of their relations to someone with physical disabilities. For example, one of the participants recalled an incident in which she witnesses her sister who is physically challenge and sits on a wheelchair, vocally expressed indignation towards a lady that was being rude to her:

[…] as a vendor in the market I would sometimes take Amina with me to the market because I do not like to leave her at home alone. Besides, as she is also interested in becoming a vendor, I thought it wise to practice and learn from me. […] a customer stopped by and wanted to buy some salad tomatoes so Amina reached out to pick up the tomatoes and put them in a bag. The customer shouted, don’t touch it! I want this other woman to put it in the bag not you. Amina became upset and asked why shouldn’t she help her sister since she was there to do so. Looking shocked the customer she does not want to buy the tomatoes any more and decided to leave. I was happy that Amina stood up for herself and did not feel (at least not visibly) bad about the fact that the customer didn’t buy from us. After all, we face such incidents most times I am with Amina. This simply shows that the able-bodied people prefer to buy products from abled– bodied individuals even if it is more expensive and that people with disabilities are hardly supported by the community. So even when people with disabilities are trying to help themselves for the most part the society does not supported them. Some people would call them names and view them as worthless, rather than support them. It’s so unfair (Ceesay, M. June 10, 2019).

Another participant discussed how she became so endeared and close to her blind sister growing up. She explained her experiences of supporting yet learning valuable teaching about life:

Our mother has a different mindset and think differently no matter the society’s’ views about people with disabilities. Many people feel ashamed to show others their disabled children but not my mother. You know in my 115

village, visually impaired people were excluded from the society and they do not have any value in the society. The people believe that if you are blind you could not do anything on their own so that is why they are being kept isolated. Yet, our mother took it upon herself to teach Naffie, my blind sister how to do a lot of things. She taught us, including my blind sister how to do household chores, wash our clothes, fetch water and so many other things. I remember one day my other two siblings and I were blindfolded by my mother and given buckets to go and fetch water. She wanted us to have a little feel of how it is like being blind. We struggled so hard to get to the tap, so from that day on, we know that it is not easy to be blind. […] unfortunately, my parents were poor so they could not send us to school. If they had the means, I know that we would all be educated including Naffie. That is the only reason why she is now depended on me to support her financially because we never let her beg for a living. My mother before she died made us promise her that and we’ve been supporting our sister since then. We do not see her as a burden at all instead she is a blessing to us. She is always joyful and has such a positive mindset about life just like my mother but in her own unique way. She means so much to us (Baldeh, H. July 20, 2019).

The participants in this category also recount their frustration on societal attitude towards people with disabilities. They mentioned the inattentive or dismissive treatment they sometimes witness their family members received due to their disability identity.

One participant remarked:

People need to transform their mindset. They have to learn to accept people with disabilities for who they are. They should not look at the disability but try to identify the personality in them first because they’re human beings. They could have been us, or our brother, our sister, our mother or our father – if we look at it that way, it would not be difficult for us to accept them as they are. For most people, all they see is the disability and nothing else. I wish people could change their mindset and get closer to people with disabilities. Discriminating them or distancing ourselves from them is not a good thing to do. People with disability can also be competent if given the opportunity. They are friendly, loveable, and have a beautiful heart. We should try to embrace their uniqueness and imperfections (Tourey, M. June 12, 2019).

Another participant commented: 116

I was a big problem to my mother and even my father because I am the only disabled amongst their children and I was stubborn. They were always fascinated with the fact that I am a disabled person, yet capable of doing things for myself with so much confidence and pride. So, they sent me to school and gave me so much support and encouragement. I know my rights as a citizen of this country. I am capable of standing up for myself no matter the circumstance. For example, I went to seek for a driving license, and they refused to issue it to me. They were shocked that I was asking for a driving license while I was on a wheelchair. The manner in which the officer asked me why do you need a driving license? – To me, suggested that he looked down on me. He said I didn’t need a driving license because I am a wheelchair user. I did not tolerate him to put me down like that. So I put forth my rights to him as a citizen of this country…I was ready to face the consequences. They tried to make my life unbearable for me, but I stood my ground and after several weeks they called me and gave me a license (Sinyan, A. July 12, 2019).

These participant believe that if they are treated fairly and their rights granted, they capable of doing amazing things. The story of Ndey Yassin, a blind woman who has long been active in calling for reform to help people with disabilities in The Gambia, is telling. In 2017, Ndey Yassin made history when she became The Gambia’s first blind

National Assembly member. She was among the five Gambians nominated by President

Adama Barrow to sit in the country’s legislature. As a mother of two, she is an example that disability can’t be an obstacle.

Summary of the Chapter

In this chapter, I analyzed and discussed the findings of this study, presenting the results of my data that constitute a thematic and conceptual outline from my analysis.

First, the chapter provided some descriptive information and ideas about some of my participants in order to conceptualize their stories and their voices. Second, I explained the three main themes that emerged across all the narratives of my different participants:

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identification as community reliant, identification as self-reliant, identification as employed. The overarching narrative revealed three main themes that emerge in all of the interview and stories of the participant in all categories: identification as community reliant, identification as self-reliant, identification as employed. All three themes emerge with significant frequency and/or intensity in the narrative, with each participant providing vivid examples of individuals with disabilities' experiences of differential treatment that are fixed or static for most, yet fluid for others based on the individuals’ conception of self.

In the analysis of my data, I found that all my participants portray people with disabilities experiences of difference in reference to the communication of their conception of self, and societal views towards their physical difference. They all describe and work to make meaning of the communication that span from societal attitudes, behavior, and words that range from rejection, dehumanizing, or abusive, to supportive, empowering, and affirmation. To maintain my methodological assumptions and perspectives, I explained each theme using the voices of the participant to elicit a vivid, and first-hand accounts of their disability identity experiences that I coded in the analysis.

In the next and final chapter, I present the conclusions drawn from the preceding chapter and data analysis. I provide meaning of the experiences of difference of people with physical disabilities in the Gambia. I also discuss practical implications and application of the research and limitation of the study and suggest areas for further research.

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Chapter 6: Discussions of the Findings

In this concluding chapter, I discuss the results of my data analysis previously presented in chapter 5. Based on my findings, I explicate the critical points of my data analysis that were raised during the interviews. I also discuss practical applications, limitations of the study, and make suggestions for future research. I also offer a final concluding note.

Summary of Findings

The main goal of this study was to examine the constraints of the communicative practices of the disability NGOs as advocates and source of support for members of

Gambia’s disability community, as well as to gain an insight into how those with physical disabilities in the Gambia perceive and experience their disability identity in reference to the communication that surrounds them due to their physical difference. My objective was to gain a deeper understanding, of the perspective of people living with disabilities; their lived experiences; and their feelings of being treated differently through the communicative practices of the Gambian society and the interview data I collected shed some important light on this theme. The chapter demonstrates that while the experiences of my participants differ due to their positive or negative attitude towards their disability identity, there are number of other factors that provide characterization of these experiences.

In my participants’ narratives, they frequently characterized themselves as

‘community reliant’ and thus feel fundamentally devalued as a person, as a result of dependency on society good will and the negative communication (attitude or behavior) 119

that surrounds them. Within this characterization of their disability experience, some depict themselves as helpless victims of both their physical and social (social structure) realities and society’s communication with or about them. They perceive themselves as unjustly treated, overwhelmed, negatively defined, and disparaged in conjunction with their physical difference. They depict themselves as compliant to the cultural norm and their narratives show that they try to negotiate their identities and find ways to adapt and fit into an acceptable ‘place’ within the cultural ideology.

Yet, participants within this categorization also indicate that, although others' negative assumptions limit and devalue them, none of them felt that their disability define who they are or their limitations. They seem to reject the cultural ideology about their identity as the ascribed, natural, and inevitable societal norm. However, they feel they do not have a choice since possibilities are limited.

The second thematic characterization portrays them as self-reliant and independent. Unlike those in the community reliant theme, they depict themselves as noncompliant to the dominant cultural norms and attitudes regarding their disabilities.

Thus, participants within this theme perceive themselves as capable and determine to defy and dispute the status quo of the social realities and structure. Here, the participants do not negotiate but rather claim their disability identity, and narratives focus largely on times when they confronted the negative and discriminatory cultural attitude towards them. Within this perspective, the participants resist the limitation posed by their disabilities within an inaccessible culture and request or demand opportunity and accommodation to allow them to participate fully and equitably in society. These 120

participants portray themselves as assertive, confrontational, defiant, and/or proud, refusing to be defined by negative communication of others about them and about their disability identity or physical difference.

The third and final theme that emerged for the analysis is the identification of an assertive group. Participants that are categorized within this theme like those in the self- reliant theme, portray themselves as working in various capacities and ways to reconstruct their disability identity and sense of self within the society positively. They depict themselves as overcoming the cultural norms due to being aided by positive and supportive families; they affirmed communication of family members, reliable disability

NGOs, and their strong sense of self are quite helpful. The individuals’ narratives within this characterization perceive themselves as strong, resilient, and at peace with their physical difference. Just like individuals within the self-reliant theme, they accept, embrace, normalize, and/or value their different self as an integral part of who they are as persons.

Thus, these varied yet similar thematic characterization of how people with disabilities experience their identity as disabled persons emerge within the context of others’ communications, cultural, and structural norms that range from negative behaviors and attitudes to positive and confirming ones. Although many of the participants recount enduring communication, behaviors, and attitudes of others that were cold, rejecting, dismissive, demeaning, and patronizing, on the other hand, some recall positive communication of others that were supportive, empathic, respectful, sensitive, and affirming. The communication and behavior of others clearly has had a major impact 121

on these individuals’ identities as persons with disability. However, it is also obvious that the connection between others' behavior and/or communication and the participants' construction of their physical difference differs. This is because all the participants have positive attitude towards their disabled identity: the process of accepting and embracing their different body with impairment as normal, as a reality that they must live with. So, while the social system and others’ communication might define the experiences of people with disabilities, the analysis of these participants’ accounts reveal other several crucial factors; that identity can be structured and ascribed through social experiences; that one's sense of self plays a significant role in the formation of identity; that faith and religion sometimes plays a crucial role in embracing and coping with disability identity; and that there are fixed identity of individuals with disabilities

Creating Self-Identity Through Social Structures

Several scholars have theorized the concept by which both self and social culture are formed by and through communication and social interaction. Works such as the social construction of reality (Berger & Luckmann, 1966), symbolic interactionism

(Blumer, 1969), mind/self/society (Mead, 1934), pragmatism (Dewey, 1927) and the concept of the between (Buber, 1965) all discussed the dynamics and the significance of the transactional relationship among communication, self and society. This philosophical perspective of social constructionism generally informs my methodological approach. My goal in the research was, therefore, to focus my attention within this broad perspective in relation to how the interaction, behavior, attitude, and communication of others, as well as the culture and social structures, defines the way society views people with disabilities 122

in The Gambia. It also examines how people with disabilities perceive and experience their disability identity.

Within the Gambian society, the majority of the disability community are in many ways given the impression that disability is an obstacle, which inhibits economic and political development. As Sen (1999) argues, the exclusion of anyone, “including people with disabilities, from the labor market is a critical barrier to development in low-income countries” (p.7). The view that people with disabilities are dependent is expressed through the attitudes and treatment of disabled persons by society. If disabled persons are kept at home by families, thinking that if they go outside, they are not going to benefit the society, which would consider them to be incompetent, they become disabled. They should be helped by connecting them with organizations dealing with persons with disability. People with disabilities know what to do, rather than confining them in one place – making them more disabled, which at the end makes them rely on the community for charity and as beggars.

Although the Gambian society is guilty of ableism – where people with disabled are stigmatized, discriminated, and devalued in many spheres – some forms of inclusion, reverence, and acceptance of the differently abled are common. Aside from the ordeals that people who are identified as differently abled go through, many of them agreed that, to some extent, their presence is not only needed within the Gambian society, but they also feel obliged to perform their societal roles as beggars and a source for charity and alms giving. However, this given role is designed with the interest of other people in mind so they can perform their religious and moral obligation of seeking blessings and 123

favor from God. Yet, some participants consider it a win-win situation, because they cannot obtain any form of employment and begging for alms is their only source of income and means of survival. However, many of my participants view this imposed role as restraining, degrading, and discriminatory.

Society expects that people with disabilities must follow the cultural context in which they fit within the societal structures, rather than the structures fitting into the needs of people with disabilities (Murugami, 2009). These expectations include people with disabilities being a case of charity –i.e. becoming a beggar and depending on the community for their charity and goodwill. Assuming the role of mendicants and relying on charities create a culture of dependency (Hill, 1990). Moreover, through this approach, the society conflates the identity of all people with disabilities into an essentially fixed and singular category, which includes homogenizing people with disabilities into a singular group and the ascription of a single identity (Murugami, 2009).

However, the stories narrated by the participants in this study overwhelmingly reflect contrary views to this ascription of disability identity. Although several participants with disabilities ascribed to the identity of being dependent and a source for charity, a number of my informants mentioned that they adopted the role not because they wanted to, but because they have to, due to lack of choices. This lack of choice for many individuals with disabilities is situated within wide contextual factors that are shaping and have shaped the realities, experiences, and views of how some people with disabilities perceive their identity. This includes factors such as cultural values, beliefs,

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attitudes and norms, structural barriers or accommodation, family structures, economic factors, and many others.

Thus, participants who identify themselves as community reliant mentioned that they are mainly dependent on society’s goodwill for money and material help for sustenance. At the same, their gratitude and prayers are a fundamental part of the relationship. Their lives are structured by societal expectations and too often decisions are made, and activities selected for them since they are view as passive individuals.

Participants who identify themselves within this category lamented that, due to deprived opportunities they lack personal development in terms of education, career and even community life. In other words, their lack of self- actualization in most cases leads to low self-esteem, negative self-conception, and poor self-image. In consequence, participants in this characterization blame society for their predicament and reject the cultural ideology that views their disability identity to be the ascribed norm of a “beggar." They argue that the limitations posed by the social system do not define their sense of self but rather force them to choose to identify themselves as community reliant in compulsion.

Besides, it is difficult for them to cope with and overcome the challenges and limitations that are cause by the attitudinal, social, and environmental barriers, without proper formal education, skills, and chance to participate in community activities and events. Hence, accepting their self-identity as a source for charity is a conscious action that is dominated by social ascription as a coping strategy for survival. The participants in this group mentioned that they could not ignore or reject the “beggar identity’ fostered on them due to their lack of education, career, skills, and community life. Thus, through their self- 125

reflexivity they are aware of their own life realities, their “coextensive experience”

(Mead, 1925) of limited choices. So, they are conscious of constructing their self-identity based on societal ascription. As Shakespeare (1996) mentioned in his research on

Disability, Identity and Difference, people with disabilities tend to undergo loss of self and are socialized to think of themselves as inferior by reinforcing it through negative messages of their physical difference and personal deficits. Some people with disabilities process and negotiate their lives by conforming to and assimilating social regulations that make them acceptable within societal norm (Shakespeare, 1996).

The Sense of Self in Identity Formation

While the ongoing reality for some of my participants is to ascribe to an identity fostered on them, others are able to choose their identities by ignoring and rejecting identities that the Gambian society ascribed on them based on their disabilities/physical difference. There are several factors that influence these individuals to create and maintain their sense of self, despite society defining and conflating identities of people with disabilities. Their sense of self was configured and shaped partly due to the support they obtain from family members, philanthropists, disability NGOs, and others that provided opportunities such as education, career, skills, finances, community life, inclusion, emotional support, etc. But more essentially, these individuals accept their physical difference; they are not ashamed of their different selves and have embraced their disabilities as part of their reality and identity. Therefore, they see their physical limitation as a boundary they must challenge to expand to overcome society’s stereotypes and stigma (Murugami, 2002). 126

The stories in this study show that individuals who identified themselves as self- reliant see themselves as becoming who they are mainly as a result of challenging the social system and reconstructed what society considered as abnormal body as what is normal to them. They try to live their lives contrary to what society expects and according to their own views of self – a lifestyle that is contradictory to the biomedical models that view disability as a tragedy. They created and defined their disability identities in their own terms, under their own term of reference (Watson, 2002). While they regard their disability as one of the characteristics in their personalities, they all agreed that it is society's restrictive measures and environmental barriers rather than impairments that are their main challenge. They regard their impairment as secondary and even in some instances unimportant given that they are able to perform and engage in life roles like any able-bodied individual and in some instance even perform better than their able-bodied counterparts. Thus, they are not in denial of their disability status; in fact, they have embraced it as part of their lives but not a central focus of who they are as a person. By doing so, they have learned to disregard their disability as a basis for being set apart and to reflect on their capabilities and limitations.

In consequence, individuals characterized as self-reliant, have self-agency not only because they have social and financial support, or skills and education, but because they have a choice and are able to choose, not out of compulsion. Through the creation of narratives about themselves and having sustain these narratives and work to maintain their sense of self, they have learned to reject identities bestowed on them as a result of ascribed characteristics and choose their own identity. 127

Religion and Faith in Embracing Disability Identity

While participants in this study are from diverse backgrounds, having different types of impairment, gender, and age, most of them are Muslims. All eighteen (18) individual with disabilities that were interviewed practiced Islam, including the six (6) family members of persons living with disabilities. Only two (2) of the four (4) participants who are GOVI’s employees are Christians. Also, all participants in the focus group interview were Muslims. None of the participants were directly asked about their religious affiliation; however, they all directly or indirectly identified their religion as they told their stories. At least, twenty (20) of the twenty-eight (28) individual interviews

I conducted professed their faith by describing their impairment condition as the will of

Allah. They do not regard their impairment as a curse, rather they see it as God’s creation, and according to their explanation, it is considered that ‘Allah keeps on creating you everyday of your life’ (personal communication Sohna Janha, June 10, 2019). Thus, disability can happen to anyone as a test of faith or as one’s fate in life. Therefore, participants believe that even as individuals with disabilities they have been placed on earth for a reason, and so they must trust and accept the will of Allah in their lives.

Two participants were born with disabilities or had it since infancy and seven (7) developed impairments during childhood, while nine (9) developed their impairment during adulthood. Yet, they all constructed their faith and religion as an important aspect in accepting, embracing, and coping with their disability identity within the Gambian society. However, becoming disabled during adulthood affects, changes, and challenges their perspectives. Individuals who developed impairment later in life mentioned that it 128

took a while before they could adjust or settled with their disability condition, and it was through faith in Allah that they eventually embrace their disability identity.

None of the participants believe that their condition is a curse from Allah; rather they emphasize the fact that Allah has predestined everyone’s life; therefore, as a believer, even if they have to ask the question “why me,” they ultimately accept and or embrace their fate. Among all the disability participants I interviewed, a sense of emotional, mental, and spiritual closeness to God was gained in their experience of disability or impairment and when discussing the cause or reason for their disability condition, they distance their stories from the socially negative perspective that disability is punishment from God for wrongdoing committed by the person or their family members. Nor do they believe the traditional beliefs that disability is a result of magic or a result of a cause that is passed down through the generations. Instead, their stories show strong connection between their faith in God’s divine plan and their identity as a disabled person.

However, although all the participants believe the general perception of the society that disability is inherently negative is not only false but also wrong, only participants characterized as self-reliant have asserted a positive disabled identity and have prospered in spite of their disability. They have not only found faith as all the other participants, but they have also taken initiatives and are willing to take risks by trying new ways of doing things. They have also developed the drive to push ahead and persevere. Thus, they see their disability as a special challenge from Allah, so their faith

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directed them to find purpose and meaning in deflating societal stereotype and prejudice about disability.

Disabilities and Fixed Identity

Through the participants' personal stories, it is clear that, in significant ways, class is major determinant of disability experience; the family background of individuals with disabilities plays a powerful role in the individuals’ physical realities. Class “changes the consequences of impairment and reduces the exposure to oppressive social relations”

(Shakespeare, 1996, p. 17). Although the participant with disabilities I interviewed have similar experience with regards to societal negative stereotypes and prejudice, they still do experience their disablement differently. For example, the participants who are self- reliant had educational opportunities, careers, businesses, and/or income, as opposed to participants that are community-reliant, who do not have such opportunities. However, if individuals in the community-reliant group were presented with the same opportunities as the self-reliant individuals, they would also experience their disability identity differently.

Yet, despite how much people with disabilities strived to formulate and legitimized their disabilities, The Gambia’s social, economic, and political structures tend to define the status of many people with disabilities as liabilities rather than an asset

(Murugami, 2009). This is because the system creates more people with disabilities that are community-reliant than self-reliant, essentializing persons with disabilities and unconsciously constructing a fixed ‘charity oriented’ identity for many individuals with disabilities. In The Gambia, people with disabilities are relegated to the borderline and

130

restricted by social structures to contribute fully towards national development or even community life. Instead, they are affixed to a life of seclusion and/or charity.

While scholars have argued that identities are not fixed but are constantly evolving (Watson, 2002, p. 511) and are often dependent on context (Reeve, 2004;

Rhodes, 2008), it has also been suggested that the “experience of disability varies at different times and in different cultural context” (Shakespeare, 1996, p. 12).

Nevertheless, given participants' stories of self-representation and experience, it can be argued that disability identities for many individuals are fixed, yet fluxed for few others.

For example, some of my participants (specifically seven [7] of them), indicated that they are ‘professional beggars’ and do not see themselves doing or performing any other role than begging. At least three (3) participants mentioned that they have been begging for over thirty years.

Judith Butler (1990) describes gender identities as self-representation that centers on performativity and therefore gender identities as not fixed since gender centers on performativity. Even though constructing gender identity differs in many aspects from disability identity, I find Butler’s view to be useful in explaining identity construction of disabled individuals in The Gambia since the descriptions of the participants in this study demonstrates active agency in reconstructing, redefining and/or performing their disability identity. Some perform contrary to societal expectation, despite societal attitude and structures, while others passively absorb, internalize, and perform according to society’s expectation by becoming a mendicant. Thus, for those who perform and comply to what the Gambian society considers the norm for individuals with disabilities, such as 131

being a beggar, they embodied the fixed identity of disablement and are viewed as such.

However, individuals who perform differently and contrary to societal expectation demonstrate that it is wrong to reify people with disability in spite of social and cultural context.

Thus, disability identity is fixed for many people with disabilities in the Gambia, yet “malleable” (Davis, 2013, p. 239) for others. Moreover, Shakespeare (1996) describes disability as a “powerful identity” –an identity that can transcend or overshadow other identities (p. 16). Individuals with disabilities are viewed as a disabled first before their other identities such as gender (Shakespeare, 1996). In addition, people with disabilities who comply with the cultural norm are more prone to a disability identity that is fixed than those who reject the cultural ideology of disablement.

Practical Implications

My expectation is that the insights revealed in this study will have a positive impact in ensuring the rights of persons with disabilities to education, equal employment opportunities, better healthcare, adequate housing and active community participation. I also hope that the study shows a deeper understanding of the experiences of the differential treatment and realities people with disabilities are facing. I believe this study will create greater awareness of the role that The Gambia’s socio-cultural system plays in shaping the reality and identity of individuals with disabilities in order to make change and ensure more sensitive, and respectful attitude and communication (verbal and nonverbal) towards them. This attitudinal change is needed in all sectors of Gambian society.

132

It is imperative that the Gambian government adopt the Disability Bill by passing the legislation as it will help offer the much-needed legal protection of the rights of persons with disabilities in all areas, be it in employment, education, health, housing, recreation, and so on. The current provision in the constitution that deals with disability rights issues is vague and framed in a language that does not impose a concrete commitment from the government. Thus, if the Disability Bill is adopted into law, the rights of people with disabilities will be ensured and the discrimination, alienation, and unequal treatment of individuals with disabilities will be minimized. Even though, over the years, there have been significant improvement in peoples’ attitude towards individuals with disabilities due to the advocacy work of the disability groups and NGOs, more practical support is needed from the government because persons with disabilities in the country constitute almost 1.6% of the Gambian population (Bah & Sidibeh, 2015).

The welfare and well-being of this segment of the country’s population should not be ignored. It is the state that has the resources to ensure that persons with disabilities have equal opportunities like their counterparts. The data collected for this study reveals that individuals with disabilities want to be engaged in all aspects of social activities and not just be viewed as beggars.

Although disability NGOs can help alter the lives of persons with disabilities, they cannot totally change their lives. What NGOs can do best is to engage and advocate for the rights of persons with disabilities to be in our national discourse. But if they have the notion that it is their responsibility to enhance the socio-economic circumstances of persons with disabilities, then they will be putting too much burden on themselves. The 133

state should be the primary actors in this since it is the state that has the resources from tax collection to distribute resources to everyone without any form of discrimination.

Therefore, the government should work together more closely with disability NGOs such as GOVI to ensure major impact in the lives of people with disabilities.

The fact that disability NGOs serve as forums and agencies that help seek funding and advocate for reforms on behalf of persons with disabilities is something that should be recognized. However, persons with disabilities themselves should be not marginalized in whatever activities that these NGOS hold as persons with disabilities have agency.

They should bear their own agency and be their own agents. If persons with disabilities are included in NGO work, not as beneficiaries but as stakeholders, the sustainability of projects will be ensured. So, disability NGOs and the government need to include people with disabilities in every step of their own developmental programs and process, as participation is integral in any form of development. Sources from my interviews mentioned that in most of the programs designed for people with disabilities, they are included in implementation stages and excluded in the most crucial stage, which is the designing phase. They should be part of the designing and the implementation stages as well as the monitoring and evaluating phases. They should also be involved in the decision-making processes. Engaging people with disabilities in the process of their development efforts will not only ensure sustainability of the program but will make it more valuable and vibrant.

Integrating persons with disabilities within the community early on in all aspects of The Gambia’s socio-economic and political activities will make others become aware 134

of not only how they do things differently but will also that people with disabilities have capabilities when given the opportunities. Although efforts are being made by the disability NGOs and the Gambian government to help integrate children with disabilities that are opportune to attend school to join the mainstream schooling system, well- measured steps are yet to be taken to ensure a full integration of persons with disabilities into the community. For example, the government must make sure that special education is an integral part of the national education policy. Education materials and necessary assistive devices or technologies should be provided as well as training teachers in mainstream schools on the different needs of children with disabilities. Moreover, all people with disabilities should be integrated into the community and not just the children.

Any form of exclusion and/seclusion of people with disabilities should be discouraged in

The Gambia. Individuals with disabilities should be allowed to grow in their own settings. If given appropriate socio-economic support and protection, and encouraged to participate fully in all community activities, they will live lives like any integrated member of the society. Society will also be made aware that persons with disabilities have challenges that are not inherent in them but, rather, that their challenges emanate from the fact that for too long the Gambian society was unable or unwilling to adjust to some form of diversity. This is because the study shows that the negative attitude or behavior towards people with disabilities tends to significantly affect the integration of individuals with disabilities.

Parents, teachers, health care providers, and others need to be educated, trained, and sensitized about the crucial importance of being supportive, respectful, and 135

communicating positive and affirmative words towards people with disabilities. Hence, parents and family members of people with disabilities need to be provided with information and guidance regarding the fundamental and complex role their communication can have on the well-being of individuals with disabilities. They should also be encouraged to develop the skills to communicate assertively with others in the community as strong advocates for them so that there will be more awareness in the society and the name calling, prejudice, and discrimination of individuals with disabilities will be minimized. Teachers and health workers at all levels should be trained and made aware of how their attitude and communication towards children with disabilities can have positive or negative experiences growing up as well as impact and shape the children’s lives. Being conscious of the connection between their communication and how it affects the experiences of children with disabilities, can lead to the improvement of teachers and healthcare providers’ interactions with children with disabilities as well as the improvement of educating non-disabled children in terms of their interaction and ethical communication with people with disabilities or other differences.

Limitations of the study and Suggestions for Future Research

While this study provides significant insights into some of the realities and experiences of people with disabilities, the experiences described above cannot be claimed to be representative of all persons with disabilities in The Gambia or elsewhere.

The participants’ stories and experiences represented in this study may not be typical of others who live in rural areas, or in other countries or settings. This study was confined to exploring the experiences of persons living with disabilities in the Greater Banjul area. 136

Besides, the experiences and stories of others who were not interviewed may more or less defining, limiting, or prominent. As such, further research is needed to explore the experiences of people with disabilities more broadly.

The study also did not explore explicitly the different experiences of persons with varied types of disabilities. Therefore, research is needed to examine the specific differences in the experiences of persons with disabilities. For example, how do women with disabilities experiences differ from their male counterpart? How is the experience of an individual with cerebral palsy different from that of an individual with visual impairment? How does one’s age, ethnicity, or background affect individuals’ experiences and how they interpret and or construct the attitudes of others and the communication of others that surrounds them?

Future studies also could focus on the experiences of individuals who have grown up with disability conditions as their experiences may be similar or different from persons who became disabled during adulthood. Research in the area could also focus specifically on the impact that the communication practices of a particular group have on the experiences of individuals with disabilities. For examples, what is the effect that the communication practices (e.g., parents, teachers, peers, co-workers or healthcare providers) have on the experiences of individuals with disabilities?

Conclusions

The goal of this study is to explore how individuals with physical disabilities in

The Gambia experience their identity as a differently abled persons by examining the perceptions of individuals living with disabilities, the family members of persons with 137

disabilities, and employees of the disability NGO GOVI. Specifically, it is intended to understand what it means to be disabled in The Gambia by obtaining different viewpoints of how people with disabilities make sense of their identity. Furthermore, this study helps provide a deeper understanding of how people living with disabilities experience difference. Data were collected through individual and focus group interviews as well as participant observation. The results of the study suggest that people with disabilities in

The Gambia can be identified into three main categories. These include (1) individuals who rely on the community’s goodwill for sustenance, and as a result of their dependency, feel profoundly devalued by society; (2) Folks with disabilities who are self- reliant and employed, have the choice to defy and dispute the social structures that limits and discriminates them; and (3) individuals who are assertive and activist, embrace their disabilities, and portray themselves as resilient as a result of the positive support obtained from family members and people close to them.

Several other factors pertaining to the identity of individual with disabilities were also analyzed from the data. Disability identity in The Gambia is promoted by the social structures and ascribed by individuals through social interactions. It also shows that a persons’ sense of self plays a significant role in the formation of the identities they assume. In this sense, some people with disabilities are able to choose their identities by ignoring and rejecting identities that the society ascribed to them based on their physical differences. The results also imply that the faith and religion of individuals could sometimes play a crucial role in embracing and coping with their disability identity by believing that their disability condition is the will of God. Finally, the results also 138

disclose that, although some individuals with disabilities have a dynamic identity, many persons with disabilities in The Gambia have a fixed identity, as a result of society relegating them to a life of begging and charity.

Although the Gambian society still views people with disabilities as a group that relies on society for assistance and financial aid, sustained through charity and the good will of the communities in which they live, this study shows that individuals with disabilities have different viewpoints and interpretations of their everyday reality. Also, in spite of the communicative challenges the disability communities’ encounters in their everyday lives, they continued to be resilient and are optimistic that someday, societal norms and attitudes will change.

139

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Appendix

Authorization letter from GOVI

162

Interview Protocol (People with disabilities)

Interview #______

Date______/_____/______

Welcome and thank you for your participation today. My name is Marion Mendy and I am a graduate student here at Ohio University conducting a study for my dissertation project. This interview will take about 1 hour – 1 hour and 30 minutes and will include questions regarding your experiences as a person with physical disability. I will be audio recording this interview, so I may accurately document the information you convey. If at any time during the interview you wish to discontinue the use of the recorder or the interview itself, please feel free to let me know. All of your responses are confidential. Your responses will remain confidential and will be used to develop a better understanding of how people with disability construct their identity In the Gambia.

Semi- structured interview questions:

1. What is your name and how long have you experience any form of disability? 2. What does disability means to you? 3. How has disability shaped your life? 4. Tell me about your experience living as a differently abled person in the Gambia. 5. How are the identities of differently able people constructed within the Gambian community? 6. How does the disability NGOs such as GOVI construct people who are differently abled? 7. How do you construct your identity as a differently abled individual? 8. Can you describe your relationship with the disability community? 9. What are the challenges faced by people who are differently abled? 10. How would you describe your relationship with NGO employees? 11. Is there anything you would like to share before we conclude this interview? ***Note: Probing when necessary

*** If participant wishes to discontinued study, ask if they would be willing to share

Why***?

Thank you for your participation in this study.

163

Interview Protocol (Employees of GOVI)

Interview #______

Date______/_____/______

Semi- structured interview questions:

1. What is your name and how long have you been working for this disability NGO / GOVI? 2. What does disability means to you? 3. Tell me about your experience working with people living as a differently abled person in the Gambia. 4. How are the identities of differently able people constructed within the Gambian community? 5. How does the disability NGOs such as GOVI construct people who are differently abled? 6. How do you construct the identity of a differently abled individual? 7. Can you describe your relationship with the disability community? 8. What are the challenges faced by people who are differently abled? 9. Is there anything you would like to share before we conclude this interview? ***Note: Probing when necessary

*** If participant wishes to discontinued study, ask if they would be willing to share

why?***

Thank you for your participation in this study.

164

Interview Protocol (Focus Group Discussion)

Interview #______

Date______/_____/______

Welcome and thank you for your participation today. My name is Marion Mendy and I am a graduate student here at Ohio University conducting a study for my dissertation project. This interview will take about 1 hour and 15 minutes and will include questions regarding your experiences as a person with disability that have participated or benefited in any form, from the intervention work of NGOs. I would be recording this interview, so I may accurately document the information you convey. If at any time during the interview you wish to discontinue the use of the recorder or the interview itself, please feel free to let me know. All of your responses are confidential. Your responses will remain confidential and will be used to develop a better understanding of how people with disability construct their identity In the Gambia.

Instructions: A focus group is like a group interview. I am interested in everyone’s responses to the questions, and there are no right or wrong answers. I appreciate your input in the discussion.

Semi- structured interview questions (ask and probe for responses): 1. What does disability means to you? 2. How are the identities of differently able people constructed within the Gambian community? 3. How does the disability NGOs such as GOVI construct people who are differently abled? 4. How do you construct the identity of a differently abled individual? 5. Can you describe your relationship with the disability community? 6. What are the challenges faced by people who are differently abled in the Gambia? 7. Tell me about your experience working with GOVI employees. 8. Is there anything you would like to share before we conclude this interview? ***Note: Probing when necessary.

*** If participant wishes to discontinued study, ask if they would be willing to share

why? ****

Thank you for your participation in this study.

165

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