“If they can accept normal children, why can’t they accept mine?” A study on the stigmatisation of children with disabilities in the Metropolitan Region of Colombo, Sri Lanka

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“If they can accept normal children, why can’t they accept mine?”

A study on the stigmatisation of children with disabilities in the Metropolitan

Region of Colombo, Sri Lanka

Julia Leeflang

MSc International Development Studies Graduate School of Social Sciences

University of Amsterdam Supervisor: dr. Sylvia I. Bergh

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Abstract

People with disabilities in Sri Lanka face many challenges in society, including a lack of opportunities in education, higher rates of poverty and inaccessible environments. An underlying barrier of these challenges is social stigma. While stigmatisation of disability occurs at all ages, the literature suggests that the stigmatisation of young children may be especially impactful for their development and for their family.

Existing research on disability in Sri Lanka does not go into depth on the specifics of the stigmatisation of disability in this country. This research fills this gap by exploring the different facets of stigmatisation of disability in Sri Lanka, to answer the question ‘How is disability conceptualised and how do parents of parents of children with disabilities (CWDs) experience stigmatisation in the Metropolitan Region of Colombo?’. This research focuses on the experiences of parents of CWDs with the stigmatisation of the disability of their child and of themselves as parents. This research was done through conducting surveys, interviews and focus group discussions with 33 parents of CWDs at four different disability organisations in the Metropolitan Region of Colombo. In addition, interviews were conducted with 9

professionals and 5 scholars in the field of disability.

The findings of this study suggest four main themes in the stigmatisation of CWDs. Firstly, based on a Buddhist conceptualisation of disability related to the theory of karma, CWDs were often pitied and the subject of charity. Furthermore, due to perceptions of incompetence, CWDs have fewer opportunities in education and the prospects of their future employment are limited. The third theme involved people’s lacking awareness on disabilities, which result incorrect beliefs and ideas about CWDs. And finally, the stigmatisation through structural neglect. The inaccessibility and poor facilities of public transport, health care and education and lacking government policies pose large challenges for the participants of this research.

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Acknowledgements

There are many people I want to thank sincerely for their support throughout the fieldwork and write-up processes of this research. Firstly, all of the parents who so kindly helped me to achieve this research by sharing their experiences with me. Without your participation, I would not have been able to finish this research. Additionally, the different organisations that offered their time and support for my research, E.A.S.E., Reach Beyond and AIDSL. Also the different scholars with whom I had interesting conversations, especially Lasanthi Daskon and Niluka Gunawardena.

Furthermore, I want to express my gratitude towards the people at the National Centre of Cerebral Palsy and other Developmental Disorders. Throughout my time in the field, you welcomed me with open arms. In particular, I want to thank Usha Mohan for your support, encouragement and insights into my research. Joining you at the NCCPDD taught me a lot of life of children with disabilities in Sri Lanka.

Finally, I would like to thank my supervisor, Sylvia Bergh. Your support and feedback have been very meaningful throughout the fieldwork and write-up processes. And the second reader of my research, Nicky Pouw, for her feedback on my thesis and for leading the

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List of Abbreviations

AIDSL Association of the Intellectually Disabled in Sri Lanka ASD Autism Spectrum Disorder

CMR Colombo Metropolitan Region CWD Child with a disability

DOJF Disability Organizations Joint Front DCS Department of Census and Statistics FGD Focus Group Discussion

ICF International Classification of Functioning

NCCPDD National Centre for Children with Cerebral Palsy and other Developmental Disorders

PWD Person with a Disability

UNCRPD United Nations Convention for the Rights of Persons with Disabilities WHO World Health Organisation

List of Figures and Tables

Figure 1: Four types of stigma (Bos, Pryor, Reeder & Stutterheim, 2013) 13 Figure 2: The interrelated components of stigmatisation 14 Figure 3: Dimensions of responses to stigma (Miller & Kaiser, 2001) 18

Figure 4: Conceptual scheme 20

Table 1: Distribution of PWDs according to type of impairment 24

Table 2: Distribution of PWDs according to age 24

Table 3: Description of Sri Lankan policies that affect PWDs 25 Table 4: Foster Greer Thorbecke (FGT) poverty estimates 27 Table 5: Educational engagement of PWDs of school age in Sri Lanka 29 Table 6: Distribution of the participants among the organisations 32 Table 7: The different disabilities of the children of participants in this research 32 Table 8: An overview of the answers related to surveys and survey-based

interviews (n=14) 47

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1. Introduction

As stated in article 7 of the United Nations Convention on the Rights of Persons with

Disabilities (UNCRPD): states should “ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children” (UN General Assembly, 2006, p. 7). In reality, however, children with disabilities (CWDs) face many challenges in life that able-bodied children do not. It is estimated that between 25 and 50 percent of CWDs are out of school (The International Commission on Financing Global Education Opportunity, 2016). This number is said to be especially high in developing countries, where approximately 33 million CWDs are not going to school. Furthermore, the chances of these children facing poverty during their childhood and adult life are higher than those of non-disabled children (Filmer, 2008). Moreover, CWDs often face inaccessible environments as many services, places and buildings have not been constructed in a way that accommodates their needs (Thornicroft, Brohan, Rose, Sartorius & Leese, 2009).

Similar challenges have been found in Sri Lanka. Sri Lanka is said to be among the highest ranking countries regarding social indicators in Asia, with remarkable achievements in education and strong performance of the health care system (World Bank, 2019). However, even with this high performance on social indicators, it has been found that persons with disabilities (PWDs) are still highly marginalised in society (Liyanage, 2017). “Out of a 10.6% population of school-aged children with disabilities, the number of children who access education is as low as 4.6%” (UNICEF, 2003 as cited in Abeywickrama, Jayasinghe & Sumanasena, 2013). Furthermore, it has been found that health care facilities are inaccessible and inadequate for people with disabilities (Liyanage, 2017).

Several general barriers exist that cause these challenges in the lives of CWDs. These barriers include inadequate policies, insufficient knowledge, limited funding, and lacking awareness (WHO, 2011). Another barrier that has been identified in many studies, is stigma, on which this thesis focuses (e.g. Sharma & Das, 2015; Thaver & Lim, 2014; WHO, 2011).

1.1 Problem Statement

Stigma refers to “a social process, experienced or anticipated, characterized by exclusion, rejection, blame or devaluation that results from experience, perception or reasonable

anticipation of an adverse social judgement about a person or a group” (Weiss, Ramakrishna & Somma, 2006, p. 280). The previously mentioned challenges that CWDs face, are often all

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9 consequences of the societal stigma towards disability. Due to stigma, people are less willing to accommodate the needs of persons with disabilities (PWDs). However, stigmatisation also affects the behaviour of PWDs, due to their fear of being stigmatised they are less likely to seek help (Thornicroft et al., 2009). Additionally, the exclusion felt by these people because of stigma, can result in lower feelings of self-worth, and higher chances of feeling depressed and socially isolated (Green, Davis, Karshmer, Marsh & Straight, 2005).

Stigmatisation of CWDs does not only affect the children themselves, but also their parents. Not only, have parents reported to be concerned about their child’s prospects of education, employment and marriage due to societal stigma (Murugupillai, Wanagasinghe, Muniyandi & Arambepola, 2016). Parents also face associative stigma. People who are closely associated with stigmatised persons can also be subjected to stigmatisation from the public, this is referred to as courtesy stigma (Goffman, 1963) or associative stigma (Mehta & Farina, 1988).

Dealing with stigma plays a significant role in the life of parents of CWDs (Kinnear, Link, Ballan & Fischbach, 2016). Research has found a relationship between stigma and increased feelings of distress and shame among parents of CWDs (Werner & Shulman, 2015). The internalisation the internalisation of associative stigma can result in negative self-evaluations of parents (Mak & Cheung, 2008; Werner & Shulman, 2015), which lead parents to withdraw from social life and attempt to conceal their association with their stigmatised child (Ibid). Finally, these challenges related to the stigmatisation of disability increase the perceptions of caregiver burden of parents of CWDs (Mak & Cheung, 2008; Murugupillai, et al., 2016). This can, in turn, adversely affect the quality of care parents provide to their CWD (Wijesinghe, Fonseka & Hewage, 2013).

Previous studies have found negative attitudes towards CWDs in the Sri Lankan society and parental concern about the stigmatisation of their child (Abeywickrama et al., 2013; Liyanage, 2017; Murugupillai et al., 2016). These findings, however, have only been highlighted through studies on different topics relating to disability. To the best of my knowledge, the topic of stigmatisation of CWDs in Sri Lanka has never been explicitly explored in research, nor has research been conducted into the experiences of parents

regarding the stigma of their children. Therefore, this study investigates the stigmatisation that occurs in the Sri Lankan society towards CWDs.

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1.2 Research Questions

The main research question that I answer in this study is:

How is disability conceptualised and how do parents of parents of children with disabilities (CWDs) experience stigmatisation in the Metropolitan Region of Colombo?

The following sub-questions have been developed to help answer the main question: - How is disability conceptualised in Sri Lanka?

- How do parents of CWDs experience the stigmatisation of their child? - How do parents of CWDs cope with the stigmatisation of their child?

1.3 Thesis Outline

This study consists of seven chapters, including this introduction. Firstly, the theoretical framework of this research is described (chapter 2). In this chapter I present different models that conceptualise stigma and define the concepts of stigma and coping. Next, in chapter 3 I explore the context of Sri Lanka, which includes a general description of Sri Lanka, a

disability specific description and an exploration of Buddhism, the main religion in Sri Lanka. In the following chapter (4) I describe the research methodology, including data collection and data analysis. Additionally, in this chapter I reflect on the methodological quality and ethical considerations of this research. Chapter 5 explores the findings from this research related to Sri Lankan conceptualisations of disability. Next, chapter 6 describes the experiences of parents regarding the stigmatisation of their CWD, including public, associative and structural stigmatisation. Additionally, this chapter discusses the coping mechanisms these parents employ to deal with the stigmatisation. The following, and last chapter (7) discusses the main findings and answer the research question. Additionally, this chapter reflects on the theory and provide suggestions for policy and practice.

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2. Theoretical Framework

In this chapter I explore both the conceptualisation of disability and complex phenomenon of stigma. In the first section (2.1) I explore five different models of disability that have been. In the following section (2.2) I define the concept of stigma and discuss four different

manifestations of stigma. Next, section 2.3 discusses the nature of stigma, which includes cognitive, affective and behavioural components. In section 2.4 I take the perspective of the stigmatised. In this section I first elaborate on the unique situation of parents of CWDs in relation to stigma. After this, I distinguish experienced and anticipated stigma and finally the concept of coping is explored. Finally, the theories are brought together in a conceptual framework in section 2.5.

2.1 Conceptualisation of Disability

An essential element of disability studies is people’s conceptualisation of disability. How one conceptualises disability forms the basis on which people develop their perceptions and ideas about PWDs. Four main models of disability can be identified that have provided the basis for people’s perceptions of disability throughout history. These models offer definitions of

disability and provide perspectives on the causality of a disability (Smart, 2004). Overall, these models form a basis for the way in which PWDs and CWDs are stigmatised. The following sections describe the four models one by one.

Firstly, the religious or moral model of disability. This is the most traditional and

historical model of disability. “Some people, if not many, believe that some disabilities are the result of lack of adherence to social morality and religious proclamations that warn against engaging in certain behaviour” (Henderson & Bryan, 2011, p. 7). Within this model, different perspectives exist on the causality of disability. The more negative connotations assume previous sin as the cause of a disability. Disability is thus seen as a form of punishment for the PWD, their parents or ancestors. More positive connotations within the religious model view disability as a test of faith (Retief & Letšosa, 2018). As Black (1996) puts it: “individuals and families are specially selected by God to receive a disability and are given the opportunity to redeem themselves through their endurance, resilience, and piety” (p. 26).

Advances in the field of medical sciences in the 19th century resulted in the development of the medical model of disability, which gradually replaced the religious model. According to this model, disability entails “a property of the individual body that requires medical

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12 intervention” (Siebers, 2013, p. 290). The focus lies on the PWD, as this person deviates from what is perceived as normal. Interventions within this model focus on curing or fixing the PWD so that he or she becomes more able within society (Olkin, 1999). Overall, the medical model is believed to have a negative connotation of the concept of disability, which sees disability as a defect or a “personal tragedy” and fails to take into account “a person’s life as a whole” (Thomas & Woods, 2003, p. 15).

In the 1960s and 1970s, the limitations of the individualist and medical accounts of disability sparked activism among disability rights movements (Retief & Letšosa, 2018). A well-known disability rights organisation that was active in the 1970s was the Union of the Physically Impaired against Segregation (UPIAS). This organisation was established by disabled persons who had all experienced segregation on the basis of their disability (Berghs, Atkin, Hatton & Thomas, 2019). The UPIAS aimed to achieve full participation of PWDs in society and to raise awareness of the plurality of issues faced by PWDs (Ibid). The central argument of the UPIAS states: “… it is society which disabled physically impaired people. Disability is something imposed on top of our impairments, by the way we are unnecessarily isolated and excluded from full participation in society” (UPIAS, 1976, p. 4).

The arguments made by the UPIAS were key to the development of the social model of disability. This model defines disability as “the disadvantage or restriction of activity caused by a contemporary social organisation which takes little or no account of people who have physical impairments and thus excludes them from participation in the mainstream of social activities” (UPIAS, 1976, p. 14). This model distinguishes disability, as defined by UPIAS, from impairment, which refers to the individual’s physical limitation (Shakespeare, 2006). Due to this distinction, this model shifts the focus from disability as an individual defect to a societal problem, as it is society that disables persons with disabilities through oppression and exclusion. As a result, societal change needs to occur to address the barriers experienced by people with disabilities.

Finally, it is worth mentioning the International Classification of Functioning (ICF). The ICF is a classification framework developed by the WHO that can be used for several purposes (WHO, 2002). In the ICF, is a combination of the medical and social model of disability which defines disability as “a complex phenomena that is both a problem at the level of a person's body, and a complex and primarily social phenomena” (WHO, 2002, p. 9). The disability and functioning of a person are the outcomes of interactions between their mental and physical health conditions on the one hand, and environmental (e.g. social

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13 attitudes, legal structures, climate, architecture) and personal factors (e.g. age, gender,

education, coping styles) on the other.

2.2 Stigma

The phenomenon of stigma has been widely studied (Pescosolido & Martin, 2015). At the heart of the many of these studies lies the publication of Erving Goffman (1963) Stigma: Notes on the Management of Spoiled Identity. In this publication, Goffman defines stigma as “the phenomenon whereby an individual with an attribute which is deeply discredited by his/her society is rejected as a result of the attribute. Stigma is a process by which the reaction of others spoils normal identity” (p. 3). This definition has become the basis for the

development of many definitions and frameworks of stigma (Bos, Pryor, Reeder & Stutterheim, 2013). Essential to most of the definitions of stigma are the identification of difference and consequent devaluation (Dovidio, Major & Crocker, 2000). Additionally, most definitions stress that stigma resides in interactions (Crocker, Major & Steele, 1998). All in all, the current study defines the process of stigmatisation as “an adverse reaction to the perception of a negatively evaluated difference” (Green, Davis, Karshmer, Marsh & Straight, 2005, p. 197).

Stigmatisation can occur on a societal, interpersonal and individual level (Bos et al., 2013). Pryor and Reeder (2011) have developed a model that describes four manifestations of stigma which take into account these different levels. These manifestations are public stigma, self-stigma, stigma by association and structural stigma. These manifestations of stigma are interrelated with public stigma at the core, as is shown in Figure 1.

Figure 1. Four types of stigma. Reprinted from “Stigma: Advances in Theory and Research” by A. Bos, J. Pryor, G. Reeder and S. Stutterheim, 2013, Basic and applied social psychology, 35(1), p.26.

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14 Public stigma refers to the way in which people in a society perceive a stigmatised

characteristic and how they behave accordingly (Van Brakel et al., 2012). In essence, this refers to “the consensual understanding that a social attribute is devalued” (Bos et al., 2013, p. 6). This understanding triggers social and psychological reactions. The second type of stigma is self-stigma, which refers to the impact of possessing a stigma. This includes the awareness, fear and possible internalisation of negative beliefs and feelings towards the stigmatised characteristic (Evans-Lacko, Brohan, Mojtabai & Thornicroft, 2012). Third is stigma by association, or courtesy stigma (Goffman, 1963). This type of stigma entails social and psychological reactions towards people who are closely associated with a stigmatised individual, such as family members or friends (Green, 2003). Finally, structural stigma involves the “public and private sector policies whose consequences restrict the opportunities of members of minority groups” (Corrigan, Markowitz & Watson, 2004, p. 482).

2.3 The Nature of Stigmatisation

The nature of process of stigmatisation has been studied in different ways. While many studies focus mainly on the negative attitudes that exist towards people with a stigmatised characteristic (Thornicroft, Rose, Kassam & Sartorius, 2007), others take into account a more complex nature of stigma. According to these studies, stigma comprises the cognitive,

affective and behavioural responses of people towards a group or person with a stigmatised condition (Bos et al., 2013; Crocker, Major & Steele, 1998; Link & Phelan, 2001; Mak & Cheung, 2008; Thornicroft et al., 2007). These three interconnected components of stigma are represented by the mechanisms of stereotypes, prejudice and discrimination (Corrigan & Bink, 2005; Fox, Earnshaw, Taverna & Vogt, 2018). The next paragraphs discuss the

cognitive, affective and behavioural component of stigmatisation, which have been visualised in Figure 2.

Figure 2. The interrelated components of stigmatisation Cognitive component: - Stereotype Affective component - Prejudice Behavioural component: - Discrimination Stigmatised condition

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15 Within the cognitive component of stigmatisation, stereotypes have been defined as “the traits that we view as characteristic of social groups, or of individual members of those groups, and particularly those that differentiate groups from each other” (Stangor, 2009, p. 2). Some of the early definitions of stereotypes, such as Allport (1954), described them as faulty, predominantly negative and overgeneralized ideas about groups (Stangor, 2009). While stereotypes can be faulty, negative or overgeneralised, more recent descriptions have let go of these elements as principal elements of stereotypes. These descriptions emphasize the

functional nature of stereotypes as “cognitive schemas used by social perceivers to process information about others” (Dovidio, Hewstone, Glick & Esses, 2010, p. 7). In short, stereotypes represent the information about characteristics that quickly comes into mind which also shapes how we feel about and respond to them.

The information that stereotypes consist of can be based on different dimensions. A theory that provides more general dimensions of stereotypes is the Stereotype Content Model by Fiske, Cuddy, Glick and Xu (2002). According to this model, stereotypes are developed along two dimensions: warmth and competence. People have perceptions of others’ warmth and competence, differently put: “perceivers want to know the other’s intent (positive or negative) and capability” (Ibid, p. 879). High ratings on one of these dimensions do not necessarily go hand in hand with high ratings on the other, so people can perceive others as warm yet incompetent or the other way around. In the case of PWDs, the authors assume that people will have high perceptions of warmth and low perceptions of competence.

Next, the affective component of stigma which is represented by prejudice, which refers to people’s emotional feelings and reactions towards a specific group or person (Fox et al., 2018). While in general, prejudice can entail positive feelings, in the case of stigmatisation it relates to the devaluation of people who possess a stigmatised characteristic (Ibid).

In relation to the previously described stereotypes it has been said that prejudice reflects the negative feelings that people attach to the beliefs that they have about a certain group or person. This relation can be clarified by the previously described Stereotype Content Model. These perceptions of warmth and competence elicit emotional feelings and reactions in people. A perceived lack of competence, for instance, is related to feelings of disrespect, while perceptions of a lack of warmth relate to dislike. As previously described, PWD are perceived as warm but incompetent (Fiske et al., 2002). As a result of these stereotypes, people have feelings of disrespect and pity towards people with disabilities. However, these feelings are often also combined with feelings of sympathy and compassion.

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16 Finally, the behavioural reaction of stigma is discrimination, which entails the

“inappropriate and potentially unfair treatment of individuals due to group membership” (Dovidio et al., 2010, p. 8). These behaviours can involve aversive reactions towards a stigmatised group or individual, or limit their opportunities (Corrigan & Bink, 2005). These behaviours can be both implicit and explicit. People usually have an immediate, reflexive reaction to a stigmatised characteristic, which is followed by a more controlled response (Pryor, Reeder, Yeadon & Hesson-McInnis, 2004). Whether the behaviour is automatic or not, discrimination involves the “differential and disadvantaged treatment of the stigmatized” (Pescosolido & Martin, 2015).

The relationship between discrimination on the one hand and stereotypes and prejudice on the other can go two ways. Firstly, discrimination is said to be the expression of the negative prejudice (Corrigan & Bink, 2005). On top of this, however, it is believed that stereotypes and prejudice are reinforced by discrimination, as this behaviour justifies inequalities that exist between groups (Dovidio et al., 2010). Similarly, the stigma framework of Stangl et al. (2019) includes stereotypes and prejudice both as drivers and manifestations in the stigmatisation process. The authors believe that beliefs and feelings both fuel behaviour towards stigmatised groups and individuals, and are reinforced by it.

This section on the nature of stigmatisation has explored the cognitive, affective and behavioural component of stigmatisation. The cognitive component entails stereotyping, or the information that quickly comes into mind when thinking about a characteristic. The affective component refers to prejudice, or the feelings that we have in relation to a certain characteristic. Discrimination, the behavioural component, is the unfair behaviour towards others based on the beliefs and feelings we have about a characteristic. The next section explores stigmatisation from the perspective of the stigmatised person.

2.4 The Perspective of the Stigmatised

2.4.1 Experiencing Stigma

After having described the nature stigma from the perspective of the stigmatiser, it is important to focus on stigma from the perspective of a stigmatised group or person. Within the current research, this refers to parents of CWDs and CWDs. Parents play an essential role in the life of their child due to their position as primary caregiver (e.g. Leung & Li-Tsang, 2003; Peer & Hillman, 2014). The care of CWDs is associated with unique challenges and

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17 rewards which can affect their quality of life (Algood, Harris & Hong, 2013; Leung & Li-Tsang, 2003).

One of the unique challenges faced by parents of CWDs is stigmatisation. Due to their essential role in the life of their child, parents face multiple forms of stigma if their child possesses a stigmatised characteristic, like a disability (Manago, Davis & Goar, 2017). Parents experience associative stigma on the basis of their close relationship to their CWD. However, even though they themselves are not the target, parents are also believed to be affected by the primary stigmatisation of their CWD (e.g. Blum, 2007; Davis and Manago, 2016; Green, 2003).

From the perspective of the stigmatised, stigma can be described in three different ways, namely experienced stigma, anticipated stigma and self-stigma. Experienced stigma, which is sometimes referred to as enacted stigma, is defined as the “experiences of

stereotypes, prejudice and discrimination from others in the past or present” (Fox et al., 2018, p. 6). It involves the overt rejection and discrimination of persons on the basis of their

stigmatised characteristic. Next is anticipated stigma, otherwise referred to as felt stigma. This involves “the expectations of discrimination from others in the future” (Earnshaw, Lang, Lippitt, Jin & Chaudoir, 2015, p. 2). It is related to the shame and fear of being stigmatised (Gray, 2002). Finally, both the experience and anticipation of stigma can result in self-stigma. The concept of self-stigma has already been described in section 2.1 as the internalisation of beliefs and attitudes about one’s own stigmatised condition.

2.4.2 Coping with Stigma

Stigmatisation is not something that people necessarily undergo passively (Manago et al., 2017). Often, people attempt to reduce the feelings of stress caused by the stigmatisation. They do so by employing a variety of coping strategies. Coping can be defined as “cognitive and behavioural efforts to manage specific external and/or internal demands that are appraised as taxing or exceeding the resources of the person” (Lazarus & Folkman, 1984, p. 141).

Past research has developed numerous coping classifications that attempt to

distinguish different types of coping mechanisms (Miller & Kaiser, 2001). For the purpose of this research it has been decided to use the responses to stress model developed by Compas, Connor-Smith, Saltzman, Harding Thomsen and Wadsworth (2001). According to their model, coping responses can be divided into engagement with or disengagement from a stressor. Engagement coping methods, in turn, comprise primary and secondary control

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18 coping. Primary control coping refers to efforts to “influence objective events or conditions” (Compas et al., 2001, p. 88). Secondary control coping entails adapting one’s feelings about the situation. The different dimensions described by Compas et al. are shown in Figure 3.

Figure 3. Dimensions of responses to stigma. Adapted from “A Theoretical Perspective on Coping With Stigma” by C. T. Miller and C. R. Kaiser, 2001, Journal of Social Issues, 57 (1), p.77

In their article on coping with stigma, Miller and Kaiser (2001) identify three specific coping mechanisms for disengagement, primary control or secondary control coping. The relevant coping mechanisms that have been identified as disengagement methods are physical and/or social avoidance, denial of stigmatisation and wishful thinking (Ibid). In their own way, these mechanisms all avoid the stress related to being stigmatised. In general,

disengagement coping mechanisms have been related to some adverse outcomes, including psychological distress (e.g. Major, Richards, Cooper, Cozzarelli & Zubek, 1998). However, under some circumstances these mechanisms can be effective, for instance it can be expected that a stigmatised person does not gain anything from interacting with people who they know have prejudice towards them.

The three coping mechanisms that have been identified as secondary-control coping mechanisms, include distraction, cognitive restructuring and acceptance (Miller & Kaiser, 2001). Firstly, distraction involves draw the attention away from the stigmatisation (Connor-Smith et al., 2000). Although this appears to involve disengagement as a stigmatised person

Coping Responses Engagement Coping Disengagement Coping Primary Control Coping Secondary Control Coping Avoidance Denial Wishful Thinking Problem Solving Emotional Regulation Emotional Expression Distraction Cognitive Restructuring Acceptance

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19 disengages oneself from thoughts about stigma, this is achieved through the engagement with other thoughts or activities. Next, cognitive restructuring involves redefining the meaning of stigma. “Instead of placing responsibility on themselves, they place it (often correctly) on the unfairness of other people” (Miller & Kaiser, 2001, p. 82). Cognitive restructuring is said to protect stigmatised people’s self-esteem (Crocker et al., 1998). The final coping mechanism that was identified within this category is acceptance. However, the findings on the

effectiveness of this mechanism have been mixed, especially in relation to stigmatisation (Ibid). Acceptance may even had adverse outcomes in relation to stigmatisation, such as preventing collective action and possible societal change (Wright, Taylor & Moghaddam, 1990).

Finally, the relevant primary-control coping mechanisms include problem solving, emotional regulation and emotional expression (Miller & Kaiser, 2001). First, problem

solving involves changing the stigmatisation itself, which can be done in many different ways. For instance, through telling persons to stop discriminatory behaviour, educating stigmatisers or by compensation of one’s own behaviour (e.g. Miller & Myers, 1998; Siegel, Lune & Meyer, 1998). By employing emotional regulation and expression, one can prevent the occurrence of stigmatisation. For instance, by regulating one’s angry emotions and not

expressing them, one can prevent others from responding negatively based on these emotions. Primary-control coping can also entail collective action (Wright et al., 1990), such as

lobbying and protests. However, research suggests that stigmatised people respond

individually more often than collectively to stigmatisation. Overall, literature suggests that primary-control coping mechanisms have positive results, but little research has been conducted into the effectiveness of these mechanisms.

2.5 Conceptual Framework

To explore the conceptualisation of disability in Sri Lanka and the experiences of parents of CWDs regarding the stigmatisation of the disability of their child, the previously presented theories are taken together in the conceptual framework that is shown in Figure 4.

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= impact = coping

Figure 4. Conceptual scheme showing the different elements of this research.

The conceptual scheme demonstrates the different forms of stigmatisation that affect parents of CWDs. As described in section 2.2, CWDs face both public stigmatisation and structural stigmatisation. Parents do not only experience these two forms of stigmatisation of their CWD, they also experience the associative stigmatisation of themselves as parents of a CWD. that targets themselves. This three different forms of stigmatisation are visualised by the orange arrows. The impact of the public and structural stigmatisation of the CWD on the parent is visualised by the grey arrows. The stigmatisation arrows include the cognitive, affective and behavioural components of the stigmatisation process represented by stereotypes, prejudice and discrimination, as presented in section 2.3.

The conceptual scheme also takes into account the different stakeholders that are involved in the three different forms of stigmatisation. Public stigma of the CWD originates from the society, which includes stakeholders such as family members, friends, neighbours

Child with disability Society • Family members • Friends • Neighbours • Strangers Stigma by association

Stereotypes→ prejudice→ discrimination

Service providers • Education • Health care • Public transport Government policies Structural stigma

Stereotypes→ prejudice→ discrimination Conceptualisations of

disability

Parents of CWD

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21 and strangers. Structural stigma involves the stigmatisation that occurs when CWDs receive services such as education, healthcare and public transportation. Strongly related to these services are the government policies, through which structural stigmatisation can also occur.

Underlying all three stigmatisation of CWDs is the conceptualisation of disability in Sri Lanka. The models of disability as described in section 2.1 provide common

conceptualisations of disability that reflect the beliefs and ideas people have about PWDs. These beliefs and ideas, in turn, result in or impact stigmatisation.

The conceptual scheme, furthermore, includes the coping strategies employed by parents to deal both with their own, associative, stigmatisation and with the stigmatisation of their CWD. Both of these coping processes are shown in the figure by the yellow arrows. This arrow represents the different coping mechanisms that can be employed by parents, including engagement and disengagement coping as presented in section 2.4.2.

Finally, the conceptual scheme visualises the reciprocal relationship between parents and their CWD and the they have on each other. Although the exploration of this relationship falls outside of the scope of this research, this is important to reflect as it highlights the relevance of this research. Therefore, these arrows have been left transparent.

After having explored the different theories that are relevant to this research, I explore the Sri Lankan context in the following chapter.

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3. Sri Lankan Context

This chapter discusses the Sri Lankan context in which this research has explored the experiences of parents of CWDs with the stigmatisation of disability. The first section (3.1) gives an overview of the demographics of Sri Lanka. Next, section 3.2 focuses on the context of disability in Sri Lanka. This section provides data on the population of PWDs and their economic situation based primarily on data from the Sri Lankan Census of Population and Housing of 2012 (Department of Census and Statistics [DCS], 2012). Additionally, this section presents policies that affect PWDs and the educational possibilities for CWDs. The final section zooms in on Buddhism, which is the main religion in Sri Lanka, and the theory of karma.

3.1 Demographics

This research took place in the Colombo Metropolitan Region (CMR) in Sri Lanka. Sri Lanka is an island nation in South Asia. The country has a population of approximately 21,7 million people (The World Bank, 2020). The legislative capital is Sri Jayewardenepura Kotte which is located within the CMR, which is the largest urban area in Sri Lanka. On top of that, it is the main administrative, commercial and industrial area in the country. This CMR has a total population of 5,8 million people in 2012 (The World Bank & UN Habitat, 2012), which is almost 29 percent of Sri Lanka’s total population.

Recently Sri Lanka got classified as an upper-middle income country, with a GDP per capita of approximately USD 4.030 in 2019 (The World Bank, 2020). Poverty has decreased over the years to approximately 4,1 percent in 2016 (Ibid). As mentioned previously, Sri Lanka has a strong performance on social indicators compared to other middle-income countries. For instance, Sri Lanka’s health system has achieved great outcomes on maternal and child health and infectious disease control in relation to the income level. Furthermore, Sri Lanka has achieved almost universal access to primary education, high enrolment rates in both primary and secondary education, and gender equality in education in general. However, access to both early childhood education and higher education more limited than expected from an upper middle-income country.

Sri Lanka is a country which has a variety of ethnical backgrounds. The largest ethnic group in Sri Lanka are the Sinhalese, with approximately 75 percent of the population (DCS, 2012; Kimutai Too, 2018). The majority of the Sinhalese practice Buddhism. The second

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23 largest ethnic group, with about 11 percent, comprises of Sri Lankan Tamils. Within this group Hinduism is the largest religion. The third ethnic group comprises of Sri Lankan Moors (9%), who are often referred to as the Muslims. Other ethnic groups are Indian Tamils (4%), Sri Lankan Malays (0.2%), and Burghers and Europeans (0.2%). Overall, 69 percent of the population in Sri Lanka is Buddhist, followed by Hinduism (15%), Islam (8%), Christian (7.5%) and other religions (0.5%) (Independent Advisory Group on Country Information, 2018).

3.2 Disability Context

3.2.1 Disability Data

According to the Sri Lankan national Census of Population and Housing of 2012 (DCS, 2012) a total of 1.617.924 people in Sri Lanka live with a disability, which is about 7,9 percent of the total population. This differs from global estimates of the WHO, according to which approximately 15 percent of the world’s population has a disability (WHO 2018). However, data cannot be compared to each other, due to different approaches to and conceptualisations of disability (WHO, 2011). It has therefore been decided to only use the data provided by the Census of Population and Housing of 2012.

The Census data on PWDs are based on the definition of disability as stated in Protection of the Rights of PWDs Act, No. 28 (Parliament of the Democratic Socialist

Republic of Sri Lanka, 1996), which states the following: “"person with disability" means any person who, as a result of any deficiency in his physical or mental capabilities, whether congenital or not, is unable by himself to ensure for himself, wholly or partly, the necessities of life” (1996, p. 15). The data were collected through questionnaires addressed to children, youngsters, adults and elderly which asked “whether they experience a physical or mental difficulty of any form in their day to day activities” (DCS, 2012, p. 132). The possible difficulties that could be experienced by respondents can be divided into impairments related to vision, hearing, walking, cognition, self-care and communication. The distribution of the impairments based on these six categories can be found in table 1.

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24 Table 1

Distribution of PWDs according to type of impairment

Impairment No. Rate per 1000 in

population Sight 996.939 54 Walking 734.213 39 Hearing 389.077 21 Memory 343.689 18 Self-containing 197.575 11 Communication problems 180.833 10

Total Impaired Population 1.617.924 79 Source: (DCS, 2012)

The total population of PWDs can be divided according to gender and according to age. Of the total population of PWDs, 43 percent is male and 57 percent is female (DCS, 2012). The distribution of the impaired population according to their age is given in table 2. No data was collected on persons between 0 and 4 years of age. The data from the table shows that the prevalence of disability is higher among persons of older age. Not only is this related to aging (Campbell, 2009), but also to the 30 years of conflict in Sri Lanka between 1978 and 2009 (Jayawardena, 2015). This period has resulted in war-induced disabilities, which can be both physical and mental (Campbell, 2009).

Table 2

Distribution of PWDs according to age

Age No. Percentage of total

population of age group* 5-19 88.740 1,76% 20-39 139.704 2,28% 40-59 540.502 11,0% 60 & over 848.978 33,6%

Source: author’s own calculations based on data from Census of Population and Housing 2012 (DSC, 2012)

* The percentages in the Census of Population and Housing 2012 on the distribution of the population according to age result in a total population of 100,1 percent instead of 100 percent.

3.2.2 Legislation

The legislation that focuses on PWDs in Sri Lanka has experienced a slow development (Campbell, 2009). Table 3 provides an overview of policies from that affect PWDs that have been introduced over the years. Due to space constraints, the following paragraphs focus on the most important policies only (highlighted in bold in Table 3).

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25 Table 3

Description of Sri Lankan policies that affect PWDs Document Topic Year Aim Public

Administration Circular no. 27/88

Employment 1988 3 percent of all vacancies at public services and public corporations to be filled by PWDs

Rehabilitation of the Visually Handicapped Trust Fund Visually impaired

1992 Increase access to education, employment and housing facilities for persons with visual impairments Protection of the Rights of PWDs Act No. 28 Rights of PWDs

1996 Defines disability and introduces the

establishment of a National Council for PWDs

Social Security Board Act

Pension 1996 Provision of pension and insurance for PWDs in case of old age and accidents

Reforms in General Education

Inclusive education

1997 Increased efforts to include CWDs in regular education, when this is impossible special schools

National Policy on Disability

2003 Holistic framework to disability to achieve inclusion and equal opportunities for PWDs The Disabled

Persons Accessibility Regulations

Accessibility 2006 All public places and buildings should be made accessible for PWDs within a 3 year period

UNCRPD International rights

2006 International treaty that aims to protect the rights of PWDs

Disability Rights Bill

2006 Unpublished

Sources: (Ministry of Public Administration, 1988; Parliament of the Democratic Socialist Republic of Sri Lanka, 1992; Parliament of the Democratic Socialist Republic of Sri Lanka, 1996; The National Education Commission, 1997; Ministry of Social Services and Welfare, 2006)

In 1996, a new policy document was introduced in the form of the Protection of the Rights of PWDs Act, No. 28 (Parliament of the Democratic Socialist Republic of Sri Lanka, 1996). This act introduced the establishment of the National Council for PWDs, which is meant to promote and protect the interests and rights of PWDs and to take all of the necessary measures to do so. This includes ensuring the compliance with international conventions and declarations, establishing or encouraging the establishment of institutions that accommodate, caring for and provide educational and vocational training for PWDs, promoting research on

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26 the lives of PWDs, and raising awareness of the needs and rights of PWDs in the general public. While this act is concerned with the rights of PWDs, it does not provide a description of these rights or a philosophical framework that supports their interpretation (Campbell, 2009). Additionally, no specific mechanisms are given to ensure the implementation and enforcement of the rights of PWDs. The only explicit description of rights that is given in the act is that in Section 23 (p. 6) which describes that PWDs shall not be discriminated against on the basis of their disability with regard to employment, education or access to buildings or places.

Another general disability related policy document is the National Policy on Disability which was introduced in May of 2003 by the Sri Lankan Ministry of Social Welfare. The aim of this policy was phrased in the following way:

“The National Policy on Disability promotes and protects the Rights of People who have Disability in the spirit of social justice. They will have opportunities for enjoying a full and satisfying life and for contributing to national development their knowledge, experience and particular skills and capabilities as equal citizens of Sri Lanka.” (Ministry of Social Welfare, 2003, p. 7)

This document provides an overview on the situation of PWDs in Sri Lanka. In turn, this situation provides a basis for a policy framework which includes 26 policy areas. The principles underlying the policies targeting PWDs are ‘equity as citizens of Sri Lanka’, ‘inclusion as a democratic right’, ‘responsibility of government’, ‘empowerment of people who have disability and their organizations and parents organizations’, and ‘participation of civil society’ (Ibid, p. 10). However, while the National Policy on Disability includes many important rights for PWDs, there are no mechanisms for these to be implemented through any court or tribunal (Jayawardena, 2015).

In 2006 the United Nations convention on the Rights of Persons with Disabilities (UNCRPD) was introduced (UN General Assembly, 2006). This convention aims “to

promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity” (Ibid, p. 3). Sri Lanka has signed this convention in 2007 and eventually ratified it in 2016, meaning that by 2016 Sri Lanka has agreed to abide by the terms of the convention and will strive towards the described aim (UN, 2016). It is said that the UNCRPD sparked new

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27 rights activists (Jayawardena, 2015). In 2006, a new Disability Rights Bill was drafted, which was approved by the Cabinet of Ministers in 2008 (Disability Organization Joint Front

[DOJF], 2017). This bill is said to guarantee describe different rights for PWDs and it proposes to increase powers of the national disability authority as an independent body. However, the bill has not yet reached the parliament to be adopted as a national law.

3.2.3 Economic Situation

This section discusses the economic situation of PWDs and their families in Sri Lanka. A study of the Household Income and Expenditure Survey data of 2006/06 and 2009/10 (DCS, 2008; 2011) by Kumara and Gunewardena (2017) has resulted in poverty estimates of households with PWDs. Table 4 shows the values on two different poverty measures.

Table 4

Foster Greer Thorbecke (FGT) poverty estimates

Sample 2006/07 2009/10

HCI* PGI** HCI PGI

All households 15,3 2,9 8,9 1,6

Households with PWD(s) 23,4 4,5 15,7 3,3

Households without PWD(s) 14,7 2,8 8,5 1,5

Source: Kumara and Gunewardena, 2017

*HCI: headcount index, which refers to the proportion of the population that lives below the poverty line

**PGI: poverty gap index, relates to the depth of poverty by measuring how far the poor are from the poverty line

The findings of this study suggest that although poverty has decreased both for households with and without PWDs, the prevalence of poverty is higher for households with PWDs. On top of that, the PGI estimate shows that on average households with PWDs experience a more intense poverty, as they are further removed from the poverty line.

Another element of the economic situation of PWDs is their employment. According to the Census data of 2012 (DCS, 2012) 70,9 percent of PWDs of working age, 15 years and above, are not engaged in any economic activity.

As mentioned in table 3 under the Public Administration Circular no. 27/88, three percent of vacancies in public services and corporations have to be filled by PWDs. However, this only applies to the public sector. On top of that, it seems to be the case that in the public sector, PWDs are still not recruited due to their disability (DOJF, 2017). In 1999 another Public Administration Circular was spread among secretaries, provincial councils,

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28 departments and government corporations urging these bodies to adhere to the circular that introduced the three percent quota (Ministry of Public Administration, 1999). This suggests that in the eleven years since its introduction in 1988, the three percent quota was not yet implemented in all of the targeted government bodies. Additionally, some vacancy

descriptions that were published by the Public Services Commission in gazette notifications (e.g. Government Gazette 2016/12/09 no. 2945) include the requirement for candidates to comply with medical standards and physical requirements, even if the function does not require physical standards (DOJF, 2017). PWDs are unable to meet these requirements and, as a consequence, are often discriminated against in the recruitment for functions in public services and public corporations.

3.2.4 Education

The history of education for CWDs in Sri Lanka started in 1912, when a school for deaf and blind children was established (Furuta, 2006). In the 1960s, the Ministry of Education introduced an integrated education option, by adding special education units to regular government schools (Ibid). Since the Reforms in General Education of 1997, which were introduced in table 3 (p.25) the Sri Lankan government seems to have shifted its focus to inclusion of CWDs into mainstream schools. This was emphasized in the National Policy on Disability (Ministry of Social Welfare, 2003), which refers to international developments, such as the UN Convention on the Rights of the Child (1989), as a driving factors for this shift. All in all, different governmental documents suggest commitment towards the education of CWDs in Sri Lanka, but a gap exists between policy and implementation which may be due to a lack of legal requirements on inclusive education (DOJF, 2017; Hettiarachchi & Das, 2014; UNICEF Sri Lanka, 2013).

At the moment there are four options for CWDs to receive education in Sri Lanka, these are special schools, special units attached to regular schools, inclusive schools and special resource centres attached to regular schools which offer additional support (Hettiarachchi & Das, 2014). Despite these options, there are still many CWDs who do not receive education. The Census data on the educational engagement of PWDs has found that approximately 34 percent of school age PWDs in Sri Lanka do not go to school (DCS, 2012). An overview of these data can be found in table 5. The table shows that the older children get, the higher their disengagement from education. This can be explained by the fact that there are not

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29 possibilities to receive special education at government schools (Muttiah, Drager &

O’Connor, 2016). Table 5

Educational engagement of PWDs of school age in Sri Lanka Age Size

impaired population

Engagement in education activity Pre-school School Graduate and above Technical vocation Other educational activities Not engaged in education Number Percentage of total population 5-9 31.545 2.142 22.582 - - 417 6.404 20,3% 10-14 27.527 - 19.283 - 8 776 7.460 27% 15-19 29.668 - 11.508 32 539 1.145 16.444 55% Total 88.740 2.142 53.373 32 547 2.338 30.308 34%

Barriers to the education of CWDs in Sri Lanka that have been found by previous studies, besides lacking legal requirements on inclusive education, are the following. Firstly, teachers are said to lack the skills and training to teach in inclusive classrooms (Alwis 2005, 2015). This is also experienced by teachers themselves, who have indicated to feel unprepared to teach children with special educational needs (Hettiarachchi & Das, 2014). Furthermore, schools lack the infrastructure and the facilities to accommodate CWDs (Abeywickrama et al., 2013). Additionally, lacking awareness of parents about the educational possibilities of their child was identified as a barrier to education for CWDs (Ibid), for instance related to belayed admissions for children. Finally, negative attitudes prevent parents from sending their child to school (Murugupillai et al., 2016).

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4. Methodology

In this chapter I present the methodology that was employed during this research. First, I introduce the epistemological stance that underlies this research (4.1). This is followed by a description of the sampling methods and the resulting sample in section 4.2. In the following sections (4.3 and 4.4) I present the different data collection and data analysis methods that have been applied in this study. Next, I reflect on the methodological quality of this research based on the criteria of trustworthiness (4.5). Finally, section 4.6 reflects on the ethical considerations of this study.

4.1 Research Design

This research has aimed to explore the personal experience of parents of children with disabilities regarding the stigmatisation of disability through a qualitative research design. The qualitative nature involves an interpretivist epistemology. This relates to the aim of this research to gain in-depth insight into the personal experiences of parents to enhance

understanding of their lives and behaviour. In doing so, it offers these parents the chance to discuss their reality of experiencing stigmatisation, which they have constructed through their interaction with society. This falls in line with a constructivist ontology.

4.2 Research Sample

4.2.1 Sampling Methods

The participants of this research have been sampled through purposeful sampling methods. First of all, since I did not have a network within the research population of parents of CWDs in Sri Lanka, I was dependent on the support of organisations in Sri Lanka to gain access to participants. Initially, the sampling of these organisations was done through an online search for organisations with a mission to support CWDs and their families. Twelve organisations were contacted twice through email. Three organisations responded, one of which positively. This has resulted in a first location for data collection, namely the NCCPDD.

Once in the field, I searched for additional organisations. Firstly I attempted to find organisations in other regions than the CMR. However, due to time constraints it became impossible to visit other regions in Sri Lanka, therefore I decided to search for organisations within the CMR. All in all, I contacted around 28 organisations between one and three times through email and phone calls. Six organisations responded positively. At three of these

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31 organisations, parents and professionals participated, these were E.A.S.E, Reach Beyond and the Association of the Intellectually Disabled in Sri Lanka (AIDSL). Appointments were made with the other three organisations, but these appointments were cancelled due to the measures related to Covid-19 which cut short my fieldwork period.

The sampling of the participating parents was done in two different ways. At E.A.S.E and AIDSL employees sampled the parents, as I was only visiting for one day during which the participants had to be present. This resulted in a sample of four parents at E.A.S.E. and eleven at AIDSL. At the NCCPDD and Reach Beyond, many parents were present at the organisation on the day(s) the data collection took place, therefore I was able to ask parents to participate myself. Since the inclusion criterium of this research was to have a child with a disability, the parents at the organisations who responded positively to my request were able to participate in the research. In total, fourteen parents participated at the NCCPDD and five parents participated at Reach Beyond.

The sample of professionals and scholars was achieved through three ways of sampling. Firstly, professionals at the four visited organisations participated in the research, which resulted in eight participants. Furthermore, I reached out to scholars found through searching for scientific articles on disability studies in Sri Lanka. Through this search, 19 scholars were contacted through email, LinkedIn message, Research Gate message or phone call, five of which have participated in this research. Finally, through snowball sampling four professionals and scholars have been found who have all participated. Appointments with three additional scholars were cancelled, again due to the measures related to Covid-19.

4.2.2 The Organisations

The four organisations at which data was collected are the NCCPDD, E.A.S.E, Reach Beyond and AIDSL. The NCCPDD, E.A.S.E. and Reach Beyond focus on the provision of education and therapeutic services for CWDs and their families. At all three organisations, children with different types of disabilities are welcome, but the focus of the NCCPDD lies on cerebral palsy and that of both E.A.S.E. and Reach Beyond lies on autism spectrum disorder (ASD). AIDSL focuses, as its name suggests, on persons with intellectual disabilities. This

organisation differs from the others in that it does not focus on education of CWDs, instead it has a day-care and training centre for adults with intellectual disabilities.

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4.2.3 Sample of the Parents

A total of 34 parents participated in this research, 31 were female and 3 were male. How these participants were distributed among the different organisations can be found in table 6. All of these parent had one child with a disability, one of them had two children with the same disabilities. The children of the participants in this research had a range of disabilities, the distribution of these different disabilities in this research can be found in table 7.

Table 6

Distribution of the participants among the organisations

Organisation Method Number of participants Female Male

NNCPDD Survey 10 9 1

NCCPDD FGD 8* 7 0

AIDSL FGD 11 9 2

E.A.S.E. Group interview 4 4 0

Reach Beyond Interviews 5 5 0

Total 36 33 3

*Of this number, 4 parents also participated in the survey Table 7

The different disabilities of the children of participants in this research

*In essence cerebral palsy is a motor disability, however, people with cerebral palsy often have associated deficits, such as visual impairments, hearing impairments, epilepsy or mental deficiencies (Sanker & Mundkur, 2005). This is expected to be the case for some of the children in this research, however, this was not specifically reported.

4.2.4 Sample of the Experts

A total of 14 experts participated in this research. One of the participants is a professional who works at an international NGO which focuses on supporting PWDs. Another nine worked at the NCCPDD, E.A.S.E., Reach Beyond and AIDSL. Six of these professionals were founders or directors of these organisations. All of the founders and directors had a CWD themselves. However, the data collected from them was not included as data from parents, because all of them spent some time abroad and I believe this has influenced their experiences of and perspective on stigmatisation.

Disability Number of children

Autism spectrum disorder 4

Cerebral Palsy* 7

Developmental delay 3

Rett syndrome 2

Unknown 14

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33 The other five are Sri Lanka based scholars who have all written scientific articles or book chapters on PWDs in Sri Lanka from a sociological perspective. The scholars have a variety of backgrounds, including are medicine, law, linguistics and economics. At the time of the study, the scholars were employed at the University of Kelaniya, University of Ruhuna, the International Foundation for Electoral Systems, the International Centre for Ethnic Studies and self-employed working on different projects related to the population of PWDs.

4.3 Data Collection Methods

4.3.1 Unstructured, In-depth Interviews with Experts

To find gain more insight into the conceptualisation of disability in Sri Lanka, which relates to the first sub-question, unstructured in-depth interviews were conducted with professionals and scholars. By conducting these interviews in an unstructured way, I aimed to prevent any preconceived ideas on my part to affect the findings through the questions I asked. On top of that, it allowed for topics that were introduced in one interview to be used as inspiration topics for other interviews.

4.3.2 Survey

To find answers to the second and third sub-questions, related to experiences of and coping with stigma, a paper-based survey was developed. No previously developed survey was found that suited the aim and theoretical framework of the current study. That is why I developed a survey for the purpose of this research. The survey questions on stereotypes and prejudice were developed based on the theory of Fiske, Cuddy, Glick and Xu (2002) and a previously developed survey by Angermeyer and Matschinger (2003). The survey questions on

behaviour were based on the Discrimination and Stigma Scale (DISC-12) (INDIGO Study Group, 2008). The statements of the DISC-12 were adapted to be more suitable to ask to a parent of a child with a disability. Qualitative sub-questions were added to all questions, which allowed the data collected through these surveys to be compared to data collected through interviews. On top of that, these questions included the topic of coping in the survey. In total, the survey consisted of 20 questions, 10 questions on the experienced feelings and 10 on discrimination. It took an average of 30 minutes for parents to finish the survey. The survey was translated in Sinhala and Tamil, the English version of the survey can be found in appendix 1.

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34 The surveys were introduced to the parents at a general parents assembly. After this, I regularly talked to the parents about my research together with the psychologist of the

NCCPDD. The psychologist was able to answer questions or translate questions so that I could answer them. Together with the psychologist I handed out the surveys to the parents in their preferred language, after which they filled out the survey individually at home and give it back after having finished it.

4.3.3 Semi-structured Interviews with Parents

In addition to the surveys, data about prejudice, discrimination and coping was collected through semi-structured interviews with parents. The survey questions formed the basis for the interview guides, as these questions were transformed into the topics for the interviews. This allowed me to compare the data collected through the survey with findings from the interviews. There were differences between the organisations with regard to the type of the interviews. At E.A.S.E. a group interview was conducted, since this was the only possibility due to the schedule of the organisation and the parents. At Reach Beyond, individual

interviews were conducted with the participating parents. While interviews at other additional organisations were planned, these were cancelled due to Covid-19 restrictions.

4.3.4 Focus Group Discussions

Two focus group discussions (FGDs) were conducted with parents at the NCCPDD and at AIDSL. Initially, FGDs were not part of this research. However, the data retrieved through surveys and interviews showed that certain topics required further exploration. The FGDs allowed me to collect data on the underlying meaning of certain topics, including the meaning of pity and the meaning of staring. The discussion among the parents resulted in increased understanding on the meaning of these topics for the parents. Additionally, these discussions resulted in more examples of prejudice and discrimination.

4.3.5 Fieldnotes

Throughout the fieldwork period, fieldnotes were recorded in a personal diary. These notes included descriptions of observations during data collection and visits of the organisations, summaries of relevant informal conversations and reflections on findings and experiences.

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4.3.6 Translation

It was necessary to use a translator during all of the data collection methods. The translation of the survey questions and survey data was done by two employees at the NCCPDD. During interviews and FGDs, translations were done by employees of the organisations who were present during the interviews. This was chosen over the use of a single translator due to the personal experiences that were expected to be shared by parents and parents might feel more comfortable discussing these with someone they are familiar with. On top of that, I did not have access to potential translators outside of the organisations. The translators were all native Sri Lankans, which meant that they could speak either Sinhala or Tamil. However, all of them were fluent English speakers, due to their educational background or time spent abroad. Although a financial reward was offered for the translators, the organisations turned down this offer or requested a donation to the organisation.

4.4 Data Analysis

All of the data was transcribed into Microsoft Word documents, the data from interviews and FGDs was based on translations that were recorded with a voice recorder and the data of the surveys was first translated on paper which was then used for transcription. An initial analysis of these findings was conducted during the fieldwork period to gain an initial overview of the experiences of parents. In doing so, findings could be discussed, in a confidential manner, with professionals and scholars to gain more understanding of how they could relate to the Sri Lankan culture.

After having returned from the field, I commenced coding of the data. Open coding was applied, which involves “breaking down, examining, comparing, conceptualizing and categorizing data” (Strauss & Corbin, 1990, p. 61). This process resulted in concepts that identified the experiences that participants of this research shared. These concepts were then categorised into broader themes that had been identified in the theoretical framework of this study. These themes included ‘conceptualisations’, ‘stereotypes’, ‘prejudice’, ‘discrimination’ and ‘coping’. Within these broader themes, sub-themes were identified to specify the findings.

4.5 Methodological Reflection

Due to the qualitative nature of this study, the quality of this research was assessed on the basis of trustworthiness as described by Lincoln & Guba (1985; 1994) and presented in

“If they can accept normal children, why can’t they accept mine?” A study on the stigmatisation of children with disabilities in the Metropolitan Region of Colombo, Sri Lanka