Academiejaar 2014-2015

Tweedekansexamenperiode

A QUALITATIVE STUDY

ON ATTITUDES AND PERCEPTIONS

TOWARDS CHILDREN WITH AN INTELLECTUAL DISABILITY

IN A SPECIAL SCHOOL IN SOUTH INDIA

Els Rogier

01001300

Promotor: Prof. Dr. Geert Van Hove

Masterproef II neergelegd tot het behalen van de graad van

Master of Science in de Pedagogische wetenschappen, afstudeerrichting

Orthopedagogiek

ABSTRACT

People with intellectual disabilities are overlooked in Indian society. Negative attitudes and stigma are most common with people with intellectual disabilities. In India, 75 percent of the people with disabilities live in rural area. Here poverty is highest. All these aspects have a negative effect on the integration and inclusion of people with disabilities. Attitudes are difficult to change. This is only possible by obtaining more knowledge about disability and thanks to (qualitative) contact with someone with a disability.

The participants of this study are staff members of a special school in South-India. The school is part of the organization SCAD (Social Change And Development) that is active in 3 districts in Tamil Nadu, Southern India. The attitudes and opinions of the staff towards children with an intellectual disability were surveyed. Not just their own attitudes, but how they perceive the attitudes of Indian society.

Data was collected through observations, document review, semi-structured interviews, in-depth interviews and focus groups. The analysis was done with a thematic analysis. A lot of attention went to the different culture, the context and the role of the researcher.

From this study the following themes appear to play an important role with respect to the attitudes in India: un(awareness); (breaking) the seclusion, (ex)changing, responsibility and perseverance. These four aspects influence each other and form a cycle.

Els Rogier

Studente Pedagogische Wetenschappen, afstudeerrichting Orthopedagogiek

A Qualitative Study on Attitudes and Perspectives towards Children with an Intellectual Disability in a

Special School in South India.

Promotor: Prof. Dr. Geert Van Hove

Academiejaar: 2014-2015

ACKNOWLEDGMENTS

There were many people involved in this study. Herewith I would like to thank them.

The following people have helped me with during the preparation stage of my research, by giving

specific information and tips: Marijke Ven and her collegues from Dominiek Savio – Gid(t)s; Anne

Cardinael and Katrien De Munck.

I would like to thank the M.S. Ramaiah Medical College and Hospital in Bangalore to broaden our

horizons on disability in India. And the people of India Platform for the practical support during our

stay in Bangalore.

I have great gratitude for all the people of SCAD, who helped me - directly or indirectly - with

conducting my research and gathering the necessary data. In the first place, Dr Cletus and Amali

Babu, the founders of SCAD to welcome me in the organization. Mr. Charles and Mr. Naga, to provide

the necessary facilities and exempting a person as translator for my interviews.

I would like to thank all the staff members of Anbu Illam to cooperate well and to endure the long

interviews. I want the thank Mrs. Anne for interpreting during the interviews of for transcripting and

translating afterwards. And all other staff of SCAD who took such good care of me during my stay.

I would like to thank Lieselotte Aerts, who was also present at SCAD, to provide critical feedback , so

that I could continue with my research.

Also during the writing process I received a lot of help, thank you for thank. Big thanks go to Céline

van Glabeke en Michiel Foulon for proofreading my thesis and for giving the necessary tips and

feedback. Thanks Pascal Ysebaert for the technical support.

I wish to apologize to my housemates. I was not always pleasant company. Thank you, Kristof, Laure

and Femke, for your endless patience.

I was fortunate to receive many encouraging and supportive words, the last weeks of this process.

Céline, Laurine, Nele, Bart and Wim, thank you so much!

Besides my friends, I also want to thank my family. Papa, Mama and Omama, thank you for always

supporting me and believing in me.

Big thanks goes to my supervisor, Prof. Dr. Geert Van Hove. During all the phases of my research and

during this long period of time, I could always count on you for advice and support.

Now, the less serious credits go to my laptop to endure this period of many overtime. But above all

not to crash. Finally, the explorers who discovered and introduced coffee to Europe Thanks to you I

was able to stay awake.

THANKS YOU ALL.

TABLE OF CONTENTS

Acknowledgments

Table of contents

CHAPTER I - INTRODUCTION

Context and Aim

Social Change And Development (SCAD)

Problem statement

Research questions

CHAPTER II - REVIEW OF THE LITERATURE

1 Introduction

2 Disability

2.1 Terminology

2.1.1 Intellectual disability

2.2 Disability in the South

3 Disability in India

3.1 Prevalence

3.2 History

3.3 Policy

3.4 The role of NGO’s

4 Social perception

4.1 Terminology

4.2 Attitudes and Beliefs

4.3 Perceptions about disability

4.4 Perceptions about disability in (South) India

4.5 Perceptions about children with disabilities

4.6 Perceptions about children with disabilities in (South) India

4.7 Perceptions about Intellectual disability in South-India

5 Conclusion

CHAPTER III - METHODOLOGY

1 Introduction

1.1 Context

1.2 Participants

1.3 Role of the researcher

2 Collection of data

2.1 Observations

2.2 Review of documents

2.3 Semi-Structured Interviews

2.4 Focus Groups

2.5 In-depth Interview

3 Method of Analysis

4 Quality of Methodology

CHAPTER IV - FINDINGS

First research question: What are the attitudes and beliefs of the staff members of Anbu

Illam towards children with an intellectual disability?

Theme 1: Normal versus Different

Theme 2: Commitment

Theme 3: Religion and Medicine

Second research question: What are the perspectives for the future of people with

Intellectual Disabilities according to the staff members of a special school in South-India?

Theme 1: Opportunities

Theme 2: Invisibility

Third research question: What are the attitudes and perspectives of Indian society towards

people with an intellectual disability, according to the staff members of a special school in

South-India?

Theme 1: Burden

Theme 2: Inclusion and exclusion

Conclusion

CHAPTER V – CONCLUSIONS AND GENERAL DISCUSSIONS

1 Discussion and interpretation of the results

1.1 (un)Awareness

1.2 (Breaking) The Seclusion

1.3 (ex)Changing

1.4 Responsibility en Perseverance

2 Recommendations

2.1 Recommendations for practice

2.2 Recommendations for policy

2.3 Recommendations for future research

3 Strengths and limitations of the research

4 General conclusion

References

Appendices

- Appendix 1: The participants

- Appendix 2: Informative letter

- Appendix 3: Informed Consent

- Appendix 4: Agreement with interpreter

- Appendix 5: Interview questions

- Appendix 6: Focus group questions

- Appendix 7: Indepth-interview questions

- Appendix 8: Phases of thematic analysis

- Appendix 9: Quality criteria for thematic analysis

Introduction

1

CHAPTER I

INTRODUCTION

Context and aim

About 15% of the world’s population, meaning over a billion people, have some form of disability.

Lower-income countries have a higher prevalence of disability than higher-income countries (WHO,

2014). Some 93 million children – or 1 in 20 of those aged 14 or younger – live with a moderate or

severe disability of some kind (UNICEF, 2013). India is the second most populous country in the

world, with over 1.271 billion people in 2015. This corresponds to more than a sixth of the world's

population. This therefore implies that India has a very large population that has a disability.

Disability is also an important development issue with an increasing evidence showing that persons

with disabilities experience worse socioeconomic outcomes and poverty than persons without

disabilities (NDA, 2007). There exists a strong link between poverty and disability (Alexander and

Buckingham, 2008). In India a lot of people are living in poverty. People with disabilities living in a

developing country, do not only face poverty as a barrier. They must also contend with negative

attitudes existing in society. Negative imagery and language, stereotypes, and stigma – with deep

historic roots – persist for people with disabilities around the world (WHO, 2014). As long as negative

attitudes persist, the full rightful acceptance of people with disabilities is unlikely (Nowicki, 2006

citing Antonak et al, 2000).

This research focuses on the attitudes and perspectives of teachers and staff members in a special

school in India. These staff members work 6 days out of 7 with children with a disability. And in this

case, mostly children with an intellectual disability. Teachers and staff members have an important

role in society. The process of acquisition of knowledge and attitudes goes through important others,

such as parents, teachers, peers, and media figures (Bandura, 1977). Since attitudes appear to be

learned rather than innate (Zimbardo et al, 1969), it is obvious what is the importance of the attitudes

of the teachers and staff members. Not only can the teachers directly influence the self-image and self-

confidence of the child with a disability. The staff members have also an important role to play in

creating awareness in the broader environment of the children. They do this whether consciously or

not by the way they talk about the kids.

The aim of this research is to explore these attitudes and perspectives to deduce how children and

people with disabilities are integrated and included into society and what opportunities they are or

are not given. There are few studies specifically about people with intellectual disability in South India

and their caregivers. This research aims to complement this. It appears that the largest percentage of

people with disabilities in India, is located in rural areas (see later). Moreover, children in rural areas,

girls with disabilities and individuals with intellectual disabilities are most often neglected and

ignored (Kalyanpur, 2008). These areas are usually not reached. SCAD wants to close this gap and this

study also anticipates to this hiatus.

Introduction

2

Social Change And Development (SCAD)

Our mission is to advance the dignity, equality, and self-determination of people with disabilities.

We continue to strive to pursue justice on matters related to human and legal rights.

We strive to create a change in perspectives on disability.

We will lead the movement to protect the rights and dignity of disabled.

And we aim to enable and empower the people with disabilities.

(Mission Statement of SCAD, 2010)

The research for this thesis has been carried out in Anbu Illam, a special school of the organisation

SCAD. In the next part I would like to outline the context where the data collection of this data took

place.

Social Change And Development is a non-governmental organisation in Tamil Nadu, South India. It

was founded in 1985 and ever since has been supporting over 500 000 people in three southern

districts, namely Tuticorin, Kanyakumari and Tirunelveli. SCAD works in and together with more

than 500 villages, focusing on the people in need (SCAD, 2010). SCAD is an organization with many

international contacts. It gets international founding by Action Aid, a UK based charity, GORTA, an

aid agency of Ireland, and Salt of the Earth, another UK charity. In addition they have contacts with

different special schools in Australia and Belgium. They provide professional training for the

employees of SCAD. Also many foreign volunteers come to help with the various projects.

“Reaching the unreached” is the biggest aim from SCAD. Besides offering help to leprosy affected

people, gypsies and elderly people, they also focus on people with disabilities. They offer community-

based rehabilitation (CBR) for families and children with disabilities. In 2014 SCAD has opened the

new Disability Rehabilitation Centre, offering physiotherapy, occupational therapy, speech therapy,

massage and orthopedic aids. And of course there is Anbu Illam, the special school. In opening the

new rehabilitation centre, SCAD drafted new ‘standards for the respect and promotion of the rights of

children and adults with disabilities’. This is reflected in 28 standards which will be implemented in

the practices and projects of SCAD.

Anbu Illam, meaning House of Love in Tamil, started in 1991 with In-House facilities for non-formal

education, SCAD strongly believes in education as an essential aid for rehabilitation of marginalized

and underprivileged persons. A full-fledged special education school in Anbu Illam has been

continuing to provide special care and individual attention through play way method to learn

effective communication since 2004. Physically challenged children, children with intellectual

imbalance, children with cerebral palsy, autism, learning difficulties, attention deficit hyperactive

disorder, and down’s syndrome continue to be benefited with the help of the specialists.

Anbu Illam has a capacity of 80 seats. But because of an incident with a caregiver in a different

organization, the Board of SCAD has decided to close the residence, only providing full-time

education. As a result, the number of students has decreased dramatically. During my stay there were

45 children enrolled. However, these were not all present at the same time. Anbu Illam employs 11

staff members and there is a coming and going of international volunteers. This study was conducted

with all 11 staff members.

Introduction

3

Problem statement

During the preparations of this research, before want to India, I started reading international

publications on disability in India. Also I visited the Belgian service centre, Dominiek Savio - Gid(t)s,

to prepare myself and get to know the population. The staff of Dominiek Savio pointed out the

greatest needs of the children with different disability and how an adequate answer can be given.

Since there is great similarity in the population concerning existing disabilities, between Anbu Illam

and Dominiek Savio - Gid(t)s. I decided not to define a specific focus or the research questions in

advance, when I was still in Belgium. I decided this based on the basic concepts of ‘Participatory

Action Research’ and because of the lack of ‘living experiences’. Arriving in India, I have visited

several other organisations besides SCAD, to get a broader picture of the offer for people with

disabilities. Besides doing a short review of the literature, I mainly used the experiences in India and

my volunteering experiences at SCAD in particular (cfr. Anbu Illam and CBR) to specify a focus and

to define my research questions.

The global or overarching topic of this research concerns the large and socially embedded picture

towards children and adolescents with an intellectual disability in Tamil Nadu, South India. By

‘picture’ I mean the totality of attitudes, perspectives, beliefs and behavior towards people with a(n)

(intellectual) disability.

During all the visits of the organisations and the participation in the Anbu Illam, I observed a duality

between the perceived dominant focus on physical disabilities despite of the high interest, concerns

and questions of the SCAD staff members towards intellectual disabilities. This finding is also

reflected in many research projects of Singal and others. In India, if one talks about disability, all too

often the focus would be placed on physical disabilities.

This observation was the motivation to focus specifically on intellectual disability during my research.

I wanted to give more attention to this neglected group. I wanted to emphasize children and people

with an intellectual disability. Most of all, I wanted the staff members to focus on the children with an

intellectual disability.

Introduction

4

Research questions Starting from the literature, but more importantly, from all the observations, I decided to concentrate

on the staff members of Anbu Illam and intellectual disability. With this research I will try to find

answers to the following research questions.

First research question

What are the attitudes and beliefs of the staff members of Anbu Illam towards children

with an intellectual disability?

In talking with the teachers during my observations in the first two months of my stay in India, I

noticed that every teacher has his/her own way of interacting with the children, their own way of

describing the children, their own way of thinking about this children. In this research I want to

explore these attitudes and beliefs. Together with the teachers, I want to discover if their perspectives

changed over the years and why. I want to let the teachers think about themselves and their own

opinions, I want to stimulate to discover their own thoughts about their attitudes, beliefs and

perspectives towards children with an intellectual disability.

Because people are social beings, we are constantly influenced by others. I have the idea that in this

Indian context the sharing of opinions depends on gender, casts, social positions,... The staff is part of

a vision created by the organisation and they have to follow rules created by the policy makers of this

organisation. Because they are part of this context and because they influence each other, I think it will

be very interesting to examine how the interaction goes between the staff members. In which level

everyone can stand behind and put into practice, the vision and mission of the organisation.

Second research question

What are the perspectives for the future of people with intellectual disabilities according to

the staff members of a special school in South-India?

How do the staff members see the future of people with an intellectual disability? Will they secure a

job? Can they get married? How does the severity of the disability influences their future? Which

opportunities are there now for children becoming 18 years old? Will this change in the future,

according to the staff members? Ir are the opportunities currently provided now satisfying? In

analyzing the data collected via focus groups and interviews, I will try to find answers to these

questions. These perspectives also form a part of their general attitudes towards people with an

intellectual disability.

Introduction

5

Third research question

What are the attitudes and perspectives of Indian society towards people with intellectual

disabilities, according to the staff members of a special school in South-India?

Connected to these roles are the interactions they have with the different people of the village. They

are part of a community that makes them aware of how different each and every inhabitant behaves

and responds towards disability. They can easily pick up the things happening around them and as

they work with children with a disability, they will (perhaps unconsciously) be more attentive to the

reactions given in their environment. That is why they are capable of outlining the attitudes and

perspectives of the South-Indian society.

Design of the thesis

After this first introduction chapter, this thesis contains of four more chapters. The second chapter

contains a literature review in which the constructs of disability and social perception are analyzed

and discussed. Both discussed generally, but particularly and specifically focused on India. The third

chapter treats the methodology used in this research. The context, population and a summary of the

methods used to collect the data. Also the method of analysis is briefly discussed in this chapter. In the

fourth chapter one can find the findings and results of this study. It contains the outcome of the

qualitative analysis. The final chapter is a discussion on the results and contains the final conclusions

of this research. This chapter aims to answer the research questions, and lists the limitations of the

study and recommendations for future research.

All bibliographical references in this research are formulated following the rules of the American

Psychological Association (APA 6th edition, 2010).

Review of the literature

6

CHAPTER II

REVIEW OF THE LITERATURE

Introduction

Disability in India of all times. It is only in recent years more attention is paid to people with

intellectual disabilities. Most studies focus on physical disabilities. Intellectual disabilities are usually

only accessed on prevalence and causes. In this chapter, I limit myself to sketching a general picture of

(intellectual) disability in India, based on the existing literature.

The purpose of this literature review is to explore the existing documents and scientific publications

on the topic of disability in India. General definitions will be added to specific information concerning

the situation in India.

This chapter discusses the following topics:

- The terminology of disability; the terminology used appears to be diverse. These definitions

already know a whole evolution.

- The prevalence of disability in (South) India; India is such a large country, what results in a

large percentage of people with disabilities. Moreover, poverty only increases this percentage.

- The history of (intellectual) disability in India; The history of Disability in India has had many

faces. An evolution of this history is outlined briefly.

- The existing policies in India; India already has a lot of policies around disability. These are

briefly discussed and their restrictions are explained.

- Social perception; we consider the construction of social perception and the impact it can

have. Additionally the role of attitudes is discussed. Perceptions about disability in general

are discussed, but we focus as well on intellectual disabilities and children with disabilities.

How these perceptions are experienced in India is also presented.

Review of the literature

7

Disability

Terminology

Disability is complex, dynamic, multidimensional, and contested (WHO, 2011). There is no single

universally accepted, unproblematic definition of disability. Not only do definitions differ across

countries but these also differ and change within a country’s evolving legal, political and social

discourses (Singal, 2009). Harris-White (2003-3) notes that ‘disability is a relative term because cultures

define differently their norms of being and doing’. While this point had been accepted for

international purposes, it is also valid when considering variations within a country, by region,

language or ethnicity, for example. Factors such as gender, age, types of impairments and local

perceptions also play significant roles in defining someone as disabled (Kuruvilla and Joseph , 1999).

In the past decades, understandings about disability have moved away from an exclusive focus on

factors within the individual to a greater appreciation of the barriers that are inherent in society

(Singal, 2007). Bearing in mind the previous, following definition provides a response to the need of a

cultural friendly definition:

“Disability is the umbrella term for impairments, activity limitations and participation

restrictions, referring to the negative aspects of the interaction between an individual (with a

health condition) and that individual’s contextual factors (attitudinal and environmental

barriers and personal factors). Defining disability as an interaction means that “disability” is

not an attribute of the person” (Leonardi, 2006).

Intellectual Disability

In this thesis I focus on children with an intellectual disability. To define “Intellectual Disability” I am

referring to two important actors in defining disabilities, namely the World Health Organization

(WHO) and the Diagnostic and Statistical Manual of Mental Disorders (DSM IV).

According to the World Health Organization, Intellectual disability means a significantly reduced

ability to understand new or complex information and to learn and apply new skills (impaired

intelligence). This results in a reduced ability to cope independently (impaired adaptive behaviour),

and begins before adulthood (onset before the age of 18), with a lasting effect on development.

Disability depends not only on a child’s health conditions or impairments but also and crucially on the

extent to which environmental factors support the child’s full participation and inclusion in society.

The use of the term intellectual disability includes children with autism who have intellectual

impairments. It also encompasses children who have been placed in institutions because of perceived

disabilities or family rejection and who consequently acquire developmental delays and psychological

problems. (WHO, 2015)

Review of the literature

8

The DSM IV defines intellectual disability as the involvement of impairments of general mental

abilities that impact adaptive functioning in three domains, or areas. These impairments must present

themselves before the age of 18 years. These domains determine how well an individual copes with

everyday tasks:

- The conceptual domain includes skills in language, reading, writing, math, reasoning,

knowledge, and memory.

- The social domain refers to empathy, social judgment, interpersonal communication skills, the

ability to make and retain friendships, and similar capacities.

- The practical domain is focussed on self-management in areas such as personal care, job

responsibilities, money management, recreation, and organizing school and work tasks (DSM,

2013).

Disability in the South

‘North’ and ‘South’ are concepts that do not refer to geographical divisions between countries but in

general these terms are broadly synonymous with ‘rich’ and ‘poor’, ‘developed’ and ‘developing’.

Significantly, most of the nations of the South are bound together by their colonial experience (Singal,

2010). Singal (2010) uses this term primarily to stap away from an era characterized by the

transmission of knowledge from so-called developed to developing nations greatly implied in earlier

terms. Disability is a development issue, because of its direct link to poverty: disability may increase

the risk of poverty, and poverty may increase the risk of disability (Sen, 2009).

Disability does not only affect the individual, but it also has a profound impact on the family unit in

which this individual operates. It is not only the individual who incurs various economic and social

costs, but the family is also disadvantaged in various ways (Singal, 2007). A growing body of

empirical evidence from across the world indicates that people with disabilities and their families are

more likely to experience economic and social disadvantage than those without a disability (WHO,

2011).

As Smart (2001) says: “Disability has been present in all societies in the world throughout history. In

spite of the long history and the universality of disability, almost without

exception, people with disabilities have been discriminated against; with that

discrimination ranging from minor embarrassment and inconvenience to

relegation to a life of limited experience and reduced social opportunity and

civil rights.”

If disability is perceived as a socially and culturally constructed category (Banks & Banks, 2001) and

researchers (Kalyanpur & Harry, 1999) have claimed that the social organization of a society has a

significant impact on its response to disability, then it is clear that there must be cross-cultural

differences regarding societal perceptions of, and responses to, disability (Murdick et al., 2004). Thus

the concept of disability and how society will respond to it depends on the beliefs and perceptions of

every country, that is, society (Murdick et al., 2004).

Review of the literature

9

Disability in (South) India

Prevalence

It is very difficult to find reliable data about the prevalence of disability in India. In general, the search

for a single prevalence rate is an illusion, and the range of estimates, and their varied origins, make it

difficult to say very much with certainty about people with disabilities (Singal, 2010). No population-

based study has been conducted at the national level to provide authentic data on the prevalence and

incidence of disability in India. Therefore one must rely on the projections made by sample surveys

(Arjun & Ganapathi, 2014).

In 2000 about 21 million people in India were found to have a disability as per official estimate

obtained from the Population Census 2001. It includes persons with visual, hearing speech, locomotor

or mental disabilities, who constitute about 2 percent of the population. On the other hand, NSS

survey on Disability (July – December 2002) estimated the disabled population in the country as 18.5

million, about 1.8 percent of the population (Central Statistics Office, 2011). In table 1 you will find an

comparative overview of the Disability Statistics, both of Census 2001 and NSS 2002.

More recent estimates indicate a percentage of around 2,1% (Census 2011 in India), alternative

estimates suggest the incidence of disability is higher- at least 5 to 8% (The World Bank, 2009).

Item of information Census 2001 NSS Survey 2002

Proportion of disabled persons in population 2,1% 1,8%

Estimated size of disabled population 21 million 18,5 million

Sex ratio among the disabled (no. of females per 1000

males)

738 698

Location of the disabled persons Rural: 75%

Urban: 25%

Rural: 76%

Urban: 24%

Decomposition of disabled population by type of

disability

49% in seeing

7% in speech

6% in hearing

28% in movement

10% mental1

15% in seeing

12% in speech

17% in hearing

57% in movement

11% mental2

Decomposition of disabled population by age-group More than 50% have age

less than 30 and 25% were

of age 50 or more

44% have age less than

30 and 35% were of

age 50 or more

1 ‘Mental’ covers both mental retardation and mental illness

2 Information on mental disability is presented for those with mental retardation and mental illness.

Review of the literature

10

Item of information Census 2001 NSS Survey 2002

Literacy and completed educational level of disabled

population

51% not literate, 26%

literate up to primary,

6% completed middle

level,

13% secondary level or

above

55% not literate,

25% literate up to

primary,

11% completed middle

level,

9% secondary level or

above

Percentage of disabled children attending schools In age-group 6-10 years:

56% (rural) and 64%

(urban).

In age-group 11-14 years:

64% (rural) and 69%

(urban).

In age-group 5-18

years: 48% (rural) and

55% (urban).

Extent of disability 60% could take self-care without aid/appliance;

17% could take self-care with only aid/appliance;

9% had not tried appliance;

13% could not take self-care even with the help of

aid/appliance

Table 1: Disability Statistics of India (Central Statistics Office, 2011).

It is remarkable that the two major surveys of India – Census and NSS - got very different results

when doing an inventory of the number of persons with a disability. This is partly due to the fact that

the Census and NSS have radically different definitions of four of the five major kind of impairments,

which explains some but not all of the differences in their estimates (Jeffery & Singal, 2008). They

define Mental Disability both as mental retardation and mental illness. The difference lurks in the

definitions of these divisions.

Jefferey and Singal (2008) discovered in a comparative study that;

“For mental impairment, the definitions used by the two agencies are very different, yet the

estimated total (2,3 million from the 2001 Census , and 2,1 million from the 2002 NSS) are very

similar. Thus neither set of estimates can be relied upon with any degree of certainty. Issues of

stigma and the complexity of accurately diagnosing some types of impairments (such as

mental retardation3) and the overlooking of lesser degrees of impairments, especially in older

age, are commonly reported.”

The only percentages in this comparison between Census and NSS that are approximately the same,

relate to the location of the disabled persons. It is striking that especially in rural areas there is a such

high percentage of disability. These people do not find their way to the medical centres. They are often

too poor to find appropriate help for their child. Both parents often work full time to earn enough

money to survive. Going to a hospital with their child with a disability, means a day without income,

what most cannot afford. The link between disability and poverty is very clear here. The lack of

appropriate services for people with disabilities is a significant barrier to health care. For example,

research in Uttar Pradesh and Tamil Nadu states of India found that after the cost, the lack of services

in the area was the second most significant barrier to using health facilities (WHO, 2011).

3 This is the old term used for intellectual disability.

Review of the literature

11

“Where poverty and disability are experienced then social marginalization also tends to occur,

whereas people with disabilities from the middle classes are more likely to access educational

and employment opportunities. Many disabled people are poor and experience additional

forms of discrimination on the grounds of caste, communal and gender status, which further

reduce their sense of entitlement to the educational and employment opportunities available

to them” (Alexander and Buckingham 2008).

Figure 1: Prevalence of disability in India (Central Statistics Office, 2011).

The NGO SCAD where the data of this study was collected, is located in the province of Tamil Nadu.

The map above shows that in Tamil Nadu 1.9% of the population has a disability. Therefore Tamil

Nadu is among the provinces with the highest disability rate. Only four provinces have a higher

percentage. Further, disabled males outnumber females disabled in all the states and union territories

except Tamil Nadu where female disables were recorded higher than males (Census, 2001). Areas

with higher literacy rate and urbanisation in general revealed a lower level of disability, but here

Tamil Nadu appeared to be an exception (Pathak, 2008).

History

The experience of disability in India is historically distinct from that of the Western tradition. While

there may be similarities between the Western and Indian high culture traditions of exclusion and

stigmatisation of people with disabilities, these cultures are grounded in different concepts of social

inclusion (Buckingham, 2010).

Review of the literature

12

In India, various types of texts can be found where different religions are based upon. An important

example of such texts, are the Brahmanic textual traditions which were written by and for the higher

levels of Hindu caste society. In these texts the exclusion of those with disabilities from inheritance, is

considered as normal and desirable.

“High culture Hindu tradition marked out those with ‘impairments’ as of low ritual value,

being unable to perform the funeral rights for the dead. The dominance of such traditions in

interpreting disability and establishing concepts of stigma are a consequence of the tendency

for surviving textual traditions to take precedence in historical writing” (Buckingham, 2010).

This way of thinking, in which the past, present and future are assigned to supernatural powers,

typifies Indian philosophical thought with its belief in 'karma'. This is accepted in large part even

today. Various religions in India preach and practice respect and service to people with disabilities,

including Hinduism, Buddhism, Jainism, Sikhism, Islam, and Christianity. Hinduism educates that

persons who help others who are poor or disabled attain "punya", which means ‘a step towards

heaven’ (Narayan, 2004).

Indian history proves that people with disabilities were referred to as objects of pity or ridicule.

Historically, it were mostly voluntary agencies who provided service provision for people with

disabilities in India. Systematic efforts for the treatment and education of disabled people started

when Christian missionaries raised homes for the rehabilitation of leprosy patients. After its

independence, India introduced a variety of services and provisions for people with disabilities (Arjun

& Ganapathi, 2014).

The voluntary agencies and missionaries have a root cause in the social attitude towards disability.

Most Indians see disability as a matter of charity, rather than a human rights issue (Arjun &

Ganapathi, 2014). The charity perspective ensures care and tolerance, but at the same time it promotes

dependency among the disabled. The charity perspective also reinforces the belief that decisions

regarding the nature, amount and recipient of charity should lie within the donor. On the other hand,

the disabled and their families must accept their hardship with fortitude, as it is a part of their karma

(Arjun & Ganapathi, 2014).

Policy

To a degree in which disability is defined and addressed in government documents and in legislation,

one can deduce the understanding of disability in a country. In India, it appears that the focus is

primarily on the identification and rehabilitation of individuals with disabilities. Disability is seen as

located within the individual, and is regarded as a problem of the individual. The primary focus in is

on providing people with disabilities with various aids and appliances, immunization, etc, that can

help them function like others, rather than addressing social results in their exclusion or non-

participation from the mainstream (Singal, 2007).

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13

The last decades, different legislations in India were promulgated to improve the wellbeing of people

with disabilities. The following four legislations have had a significant impact on the NGO sector and

the government. Of these the first three are specific to people with disabilities (Singal, 2009):

- Rehabilitation Council of India Act (1992): states that children with special needs will be

educated by a trained teacher.

- Persons with Disabilities Act (1995): educational entitlement for all children with special needs

up to 18 years in an appropriate environment.

- National Trust Act (1999): provide services and support to severely disabled children. It is also

constituted for the welfare of people with autism, cerebral palsy, mental retardation, and

multiple disabilities.

- The 86th Constitutional Amendment (2007): free and compulsory education to children, up to

14 years.

These legislations have also helped shape the National Action Plan for Inclusion in Education of the

Children and Persons with Disabilities (MHRD, 2005), and the National Policy for Persons with

Disabilities in 2006 (Singal, 2009). The four legislations are extensive in spirit, and together deal with

all aspects corresponding to rehabilitation, from prevention, training, employment, human resource

development (Arjun & Ganapathi, 2014).

In most of the recent legislations, an evolution is noticeable that moves away from the older charity

models of ‘care for the disabled’ towards a ‘rights based’ model. With this rights based model they are

emphasising the provision of equal opportunities in education, economic independence, rehabilitation

and the removal of social and environmental barriers towards the full participation of disabled people

in Indian life. The changes also mark an effort to shift away from the acceptance of traditional forms of

exclusion of people with disabilities (Buckingham, 2010).

Some claim that India has one of the most progressive disability policy frameworks amongst the

developing economies. But in reality it remains a huge challenge in operationalizing this vision

(Singal, 2009). Jeffery en Singal (2008) criticize the devious procedures, which only exclude more

people:

“These pensions and scholarships are neither generous nor adequate to meet the needs of the

people receiving benefits. The procedures to obtain the benefits are often byzantine and costly.

Not all those identified as having a significant impairment can register as disabled, which

requires completing several forms and an assessment by a qualified medical practitioner that

the person had at least a 40 per cent impairment. Assessments are not uniform: certificates

obtained from different states, and different hospitals within the same state can be widely

discrepant. Nonetheless, awareness of the benefits of having an identified and certificated

disability is spreading. Some people without disabilities are now registered, using their

influences” (Jeffery & Singal, 2008).

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14

Also Arjun and Ganapathi (2014) observed problems with practicing the laws in reality. They also

note that there is still much to improve at ground level.

“At times the process of availing of the benefits of schemes is so cumbersome and time-

consuming that most people prefer to by-pass them. Often, the government department

selected for implementing a scheme is not notified of its details and their role in it. On the

other hand, when the department concerned is notified, the officers assume a patronising

attitude towards potential beneficiaries and delay the process of implementation. (…) At the

policy level, progressive legislation, schemes and provisions exist for people with disabilities.

But at the ground level, the disabled continue to be neglected and marginalised, with the onus

of care on the family rather than the community. At the outset, not much has been done to

create awareness about disability across the country. Most people continue to believe that

disability is either an irremediable medical condition or an act of fate. Myths and

misconceptions about disability abound, causing the disabled to be ostracised, isolated and

marginalized” (Arjun & Ganapathi, 2014).

The role of NGO’s

In addition to the government, NGO’s also play an important role in supporting the inclusion of

individuals with disabilities. These organisations have played a massive role in reaching out to

individuals and communities. They also increased awareness throughout the country. In fact, the

majority of services and support groups are provided by NGOs. (Siperstein, 2005). The voluntary or

Non-Governmental Organisations (NGOs) have continued to be responsible for setting up special

schools (Kalyanpur, 2008). India has seen a significant rise in the number of special schools and in the

number of Non-Governmental Organisations working with people with disabilities. Many of these

NGO’s have been very successful in attracting large amounts of fundings provided by international

organisations (Singal, 2007).

In India in the early 1990s, there were only 1035 special schools. A decade later it was estimated that

there are about 2500 special schools in the country. Over the past few decades there has been a

growing focus on Community based Rehabilitation (CBR) programmes, which has undertaken

significant work in the areas of education, training and employment of people with disabilities

(Singal, 2007).

The Government of India offers various schemes to encourage voluntary action for rehabilitation of

the disabled. Through these schemes NGOs can access government support. Prominent among these

schemes are provision for grants-in-aid to special schools, vocational training, employment,

community-based rehabilitation projects, residential homes, and leisure and recreation centres etc.

(Arjun & Ganapathi, 2014).

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15

Social perception

Terminology

The process of social perception is the foundation of the view on and interaction with others (Wuyts,

2010). The concept of perception is defined as the mental representation of a group to which one

belongs (Forrester, 2000). These mental pictures shape our environment and serve as a guide for the

description and interpretation of reality (Pinto, 2004). It is possible that these images are an accurate

reflection of reality, but in many cases it relies on a limited representation due to a lack of

understanding. In that case, this is referred to as misperceptions (Judd & Park, 1993). The origin of

social perception is attributed to the desire of people to share their environment. Through the use of

categories one tries to make this environment, clear and manageable (Tajfel & Turner, 1979 in

Austin & Worchel). This principle is extended to the social identity theory, which states that one's

group identification is largely associated with their own social identity (Brehm, Kassin, Fein,

Mervielde & Van Hiel, 2007). Thus one categorizes oneself and others, where the group to which one

identifies oneself with, is used as a reference. One's own group characteristics are generally assessed

more positive (Tajfel & Turner, 1979 in Austin & Worchel).

The social identity theory can be accessed via the contact hypothesis and the competition hypothesis.

The contact hypothesis indicates the positive effects of interaction with members of certain groups to

form a correct perception of that group. Ter Haar and Bartel (1998) agree with this statement and

argue that contact with people with disabilities leads to even more positive attitudes. It is generally

assumed that attitudes can be changed by three predictors, namely the quantity of contact with people

with disabilities, the quality of contact and knowledge about disabilities. One assumes that these three

are highly related. However, research from McManus (2010) indicates that knowledge and quantity of

contact with people with (intellectual) disabilties were not entirely related with attitudes towards

people with disabilities. What does have an impact on more positive attitude, is the quality of the

contact (McManus et al, 2010). An alternative to this theory, is the competition hypothesis. This

hypothesis states that the image of others is shaped by the status of certain groups (Burgers, 1997).

Vermeulen (Entzinger & Stijnen, 1999) discusses this and argues that the balance of power between

groups is essential in the process of perception. When power differences are very large or seem very

large, there will indeed be no need to stigmatize the other group, because the relationships are often

stable and are unlikely to lead to conflict (Vermeulen 1990). This theory, however, is neither confirmed

nor refuted with regard to persons with disabilities.

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Attitudes and beliefs

In the Dictionary of Psychology, Corsini (1999) defined attitude as “a learned and stable predisposition

to react to a given situation, person or other set of cues in a consistent way”.

An attitude is "a relatively enduring organization of beliefs, feelings, and behavioral tendencies

towards socially significant objects, groups, events or symbols" (Hogg, & Vaughan 2005, p. 150)

"..a psychological tendency that is expressed by evaluating a particular entity with some degree of

favor or disfavor" (Eagly, & Chaiken, 1993, p. 1)

Stereotyping effects are inevitable products of human cognitive processing. So when a group is

established, stereotypical beliefs are attached to the group (Allport, 1967). People with disabilities fall

into a group, and powerful stereotypes are held towards them (Dalal et al., 1996). Attitudes toward

disabilities reflect beliefs about people with disabilities and as such guide behaviour towards

individuals with disabilities (Parasuram, 2006).

Ajzen (1991) has placed the different aspects of perception of people within the model of planned

behavior. This model analyzes which beliefs lead to certain behaviors.

Figure 2: The Theory of Planned Behavior (National Cancer Institute,2005).

Note: Upper dark section shows the Theory of Reasoned Action, the entire figure shows the Theory of Planned

Behavior.

The associated Theory of Reasoned Action (TRA) and the Theory of Planned Behavior (TPB) examine

the relationship between behavior and beliefs, attitudes, and intentions (National Cancer Institute

(2005).

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17

“According to these two models, behavioral intention is influenced by a person’s attitude

toward performing a behavior, and by beliefs about whether individuals who are important to

the person approve or disapprove of the behavior (subjective norm). The Theory of Planned

Behavior and the Theory of Reasoned Action assume all other factors (e.g., culture, the

environment) operate through the models’ constructs, and do not independently explain the

likelihood that a person will behave a certain way. The TPB differs from the TRA in that it

includes one additional construct, perceived behavioral control; this construct has to do with

people’s beliefs that they can control a particular behavior. Azjen and Driver added this

construct to account for situations in which people’s behavior, or behavioral intention, is

influenced by factors beyond their control” (National Cancer Institute (2005).

Overkamp (2000) describes a simplified approach to the Theory of Planned behavior of Ajzen, where

he focuses on the image of persons with disabilities. This model assumes that predicting the behavior

towards people with disabilities starts from one's beliefs. A belief refers to the knowledge and notions

that a person has about persons with disabilities and possible other features that are attributed to

them. This affects the attitude that determines the behavioral intention, and subsequently the

behavior.

Figure 3: Model of planned behavior (Overkamp, 2000).

Perceptions about disability

The image that represents people with disabilities is crucial for dealing with that person or social

group (Wuyts, 2006). At individual level it is characterized by a master status. Here the focus is on the

disability as the main characteristic of the person. (Goffman, 1963). Attitudes differ across cultures, but

stigma associated with intellectual disability seems to vary little (Scior, 2011). Perception can influence

a person indirectly by experiencing felt stigma. Felt stigma refers to the expectations or forecast of an

individual to have a possible negative perception (Herek in Hope, 2010). According to Scambler &

Hopkins (1986), these expectations may lead to adjusted socially desirable behavior. These

misconceptions can be improved by reducing misconceptions and accentuating the capabilities of

people with (intellectual) disabilities (Scior, 2011). Besides consequences for the individual, perception

also affects structural aspects such as government decisions and the accessibility of public spaces and

services (Wuyts, 2006). The image of persons with disabilities, is the guiding principle for policy (Ter

Haar, 1992). These individual and structural aspects are both a consequence of a certain perception as

a reason for the formation of an image. Smart (2001) describes this as, “perceptions of disability labels,

expectations of people with disabilities, and ascribed meanings of the experience of disability are all

shaped by the broader culture” (p. 71). There are people who continue to have the longing to separate

people with disabilities in work, education and live. This desire for segregation stems from fears about

the consequences that full integration might mean (Scior, 2011).

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Perceptions about disability in (South) India

As already discussed, many Indians believe that karma is linked to disability, this is especially the case

within the traditional Hindu religion. It is believed that if an individual has bad karma, he/she will be

punished in their next life. Usually this results in entering a lower caste (Siperstein 2005). Historically,

disabilities have been considered as punishments for sins committed in a previous life by an

individual or their family members (Schlossar, 2004). In some cases, families consider their children as

‘cursed’ and a burden that they must deal with, which at times leads to the neglect and rejection of the

child. The child might even be hidden from the community as the family fears they might be rejected

by the community (Girimaji, et al. 2001). The social perceptions of stigma and fear associated with

disability may further exclude families and reduce the number of relationships and networks that they

can actually establish (Singal, 2007). Family has an important role to play in addressing needs of its

members, especially when there is a family member with a disability. The family can help evolve their

capacities, and help them become aware citizens of the society. Family’s attitude can vary from

negligence to over-protection (Begum, 2008, pp. 60).

Besides the many studies showing mainly the negative perceptions towards people with disabilities

where they keep referring to negative karma, there is also research that suggests positive perceptions

towards people with disabilities. A research done by Lang (2001), shows very positive attitudes when

talking about people with disabilities:

“Disability is commonly associated with religion, sometimes attributing to disabled people

almost godlike powers. It was commonly believed that disabled people possess extraordinary

powers and gifts, and therefore do not actually perform common, everyday activities, such as

having to eat and sleep. The attitudes reported by some of the disabled people interviewed

were indeed very positive, which contrasts strongly with the popular perception in India that

the root cause of disability is attributed to sin and destiny - karma. (…) Beliefs regarding the

causes of disability varied between urban and rural areas. Within the urban areas, beliefs

regarding the etiology of impairments are more likely to equate with western understandings,

that take account of explanations derived from medical science. However, within rural areas,

the causes of disability and resulting impairments are frequently seen in a religious context”

(Lang, 2001).

Table 1 shows that 75% of people with disabilities live in rural areas. If we make the link with Lang

(above), then it is clear what beliefs predominate in India.

Kumar, Sonpal, & Hiranandani (2012) mention three kinds of responses when referring to the

perception of a disability. The first response is about treating persons with disabilities with sympathy

and pity. The second response is to follow a narrow definition of ability-focused approach, where

persons with disabilities are treated as heroes who fight and emerge as winners (Kumar, Sonpal, &

Hiranandani, 2012). The third response assumes persons with disabilities are a ‘burden’ and

‘dependent’. To be a person with disabilities generally means “to be less able, to be at a disadvantage

in earning one’s livelihood or performing the ordinary activities of life” (Begum, 2008, pp.36).

Whether the impairment is physical, mental or sensory in nature, a person is often assumed to have

less capacity to understand and to take decisions (Raja, Boyce, & Boyce, 2003). People with intellectual

disabilities emerge as one of the least desirable groups to have social interactions with (Scior, 2011).

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19

Behaviour intentions are more positive towards people with physical disabilities than regarding to

people with intellectual disabilities (Scior, 2011).

Perceptions about children with disabilities

Children with disabilities have a greater chance to suffer from stereotypical perceptions than children

without disabilities (Hanrahan, 2008). Adolescents and youth with disabilities are among the neediest

and most overlooked of all the world’s children (UNICEF report 1999:1). Although every child's

developmental processes are crucial (Verhulst, 2005), children with disabilities have an increased

vulnerability (Hanrahan, 2008) because their development is slower and reaches its ceiling faster (van

Gemert and Minderaa, 2000). Because of this backlog caused by both genetic and environmental

factors, they have a greater need for care (van Gemert & Minderaa, 2000). Focusing on this group of

young people is particularly important for the South because the number of people with disabilities in

these countries tends to be higher in the earlier, productive years (Singal, 2007). The environment

tends to react with a reduction in the expectations and a decrease in the autonomy (Wuyts, 2006). In

addition, the appearance as a result of the disability, would ensure that the child fails to meet the

prevailing ideals (Gielen, 2003). Therefore handling children with disabilities can be characterized by

compassion, disgust and fear (Meihuizen-Rainbow, the Moor & Mulders, 2003).

Perceptions about children with disabilities in (South) India

As well as the estimates of the number of persons with disabilities in India, the estimate of the number

of children with disabilities in India also turns out to be a big challenge. Again, one can determine the

considerable differences between the various estimates. The Office of the Chief Commissioner for

Persons with Disabilities (2003) notes that the figures available are highly unreliable and, depending

on how conservative the estimate is made, there are between 6 million and 30 million children with

disabilities in India. It further notes that the “Rehabilitation Council of India takes the figure of 30

million disabled children as the best estimate” (Office of the Chief Commissioner for Persons with

Disabilities 2003, p 1).

Just as for people with disabilities, the Government of India has launched different programmes

specifically for children with a disability. As there are: the Project Integrated Education Development

(PIED), the Integrated Education for Disabled Children (IEDC) and the District Primary Education

Programme (DPEP), which promote inclusive education. A growing interest in inclusion is noticeable

(Alur, 1998). Although special schools continue to be the more popular option for the education of

children with disabilities (Alur & Natarajan, 2000). Despite the heightened attention in recent years to

children with disabilities, the 2005 Right to Education Bill does not provide aid for children below the

age of 6 years (Deepa, 2006). This is in contradictory with research indicating the importance of early

intervention towards limiting the impact of disability and the social benefits of starting inclusion at an

early age (Davis et al, 1998). But inclusion in India has yet a long way to go, the 2005 Right to

Education Bill adopts an anti-inclusive attitude, suggesting that children with mental retardation need

not be placed in age-appropriate settings but according to their mental development, and that children

Review of the literature

20

with severe or profound disability who cannot be accommodated in neighbourhood schools, should

be provided an education in appropriate, alternative environments (Kalyanpur, 2008).

India has 2500 special schools for an estimated 5,500,000 children with special needs (Tandon 2007).

But these places are rarely filled. Children and parents are hindered by a lack of understanding of the

opportunities made available by government, difficulties in accessing the necessary transport for

school and a general lack of a sense of entitlement needed to overcome the obstacles in getting

education for a disabled child (Alexander and Buckingham 2008, 101). Special education in India is

handled entirely by the Ministry of Social Justice and Empowerment, rather than the Ministry of

Education. Since it is handled as a welfare issue, coordination between the Ministries is often difficult.

National programs for inclusive education have been slow to develop.

The National Census on people with disabilities conducted in 2002 found that, despite the efforts of

several programmes, about 94% of children with disabilities did not receive any educational services,

and some groups, such as children in rural areas, girls with disabilities and individuals with mental

retardation, were further under-represented (Kalyanpur, 2008). Official figures within India about the

educational participation of children with disabilities in primary education are rather disparate –

ranging from less than 1 percent (Mukhopadhyay & Mani, 2002), not more than 4 percent (National

Council for Educational Research and Training, 2005) to some reports even suggesting estimates as

high as 67,5 percent (Ministry of Human Resource Development, 2004). Again, it must be stressed that

these figures are only an estimation and so cannot be regarded as reliable.

Perceptions about Intellectual Disability in (South) India

Historically, persons with disabilities have faced exclusion and marginalization in their communities.

However, the situation has not been same for each person with a disability. Based on the kind of

disability, urban/rural location, gender, class and region, substantial differences have been found in

socio-economic outcomes, stigma, and access to services for persons with disabilities in India (The

World Bank, 2009). There are certainly many vulnerable groups present in India, but one of the easiest

to forget are the 31 million individuals with intellectual disabilities in India (WHO, 2004). People with

mental illness and intellectual impairment have been found to assume in a more disadvantaged

position (The World Bank, 2009).

Throughout the 1990’s, the Indian government developed policies to address the needs of individuals

with intellectual disabilities and to better include them in society. More specifically, individuals

with intellectual disabilities were guaranteed free education, special job allotments, and various

other resources to assure their inclusion within society. But in reality, most individuals with

intellectual disabilities have not been formally identified and even among those who have been

identified, the majority are excluded by the rest of society. As a result, individuals with intellectual

disabilities are not afforded the same opportunities as people without disabilities (Siperstein, 2005).

Peshawaria (1991) did a research specifically on the attitudes and perceptions towards people with

intellectual disabilities, here are his major findings:

Review of the literature

21

“For the most part, in the past, individuals with intellectual disabilities have been segregated

in India as a result of strongly held religious and cultural beliefs. As a result, it is not

surprising that in addition to underestimating the ability of people with intellectual

disabilities to carry out the simplest self-help tasks, the majority of those surveyed also believe

that people with intellectual disabilities should not be included with the rest of society.

Specifically, the majority of the respondents from India believe individuals with intellectual

disabilities should live with their family, work in separate facilities, and be educated in

separate schools. there is also the notion that people are uncomfortable with the presence of

individuals with intellectual disabilities because of their religious or cultural beliefs. It is also

important to consider the predominantly held belief in India that care for individuals with

intellectual disabilities should be conducted by the family, including their educational needs”

(Peshawaria, 1991).

Because the public underestimates the abilities of people with intellectual disabilities, the assumption

can be made that the exposure has been primarily with people with moderate to severe impairment. It

is also possible that that public’s underestimation is the result of the strongly held stereotype that

exists among the Indian public that individuals with intellectual disabilities are less capable than their

non-disabled peers (Ghai, 2002). At present, individuals with intellectual disabilities are seen by the

majority of people in India as fundamentally ‘flawed’ and perceived to have diminished capabilities,

thereby placing them at the bottom of the social structure, regardless of their caste identity (Ghai,

2002).

Conclusion

Research on people with disabilities in India is something that is only recently is given the attention it

requires and merits. This is reflected by the fact that there are no existing reliable statistics regarding

the number of persons with disabilities. Religious beliefs, and in particular Karma, have a great

influence in the way people with disabilities are dealt with. Families feel ashamed and try to hide their

child with a disability from the rest of the village, in order to avoid exclusion from society. This

occurs most strongly with children with a mental disability. Of all disabilities, there is still the most

stigma and prejudgments towards people with a mental disability.

The Government of India has taken many steps in the past 20 years to better integrate people with

disabilities better and to give them equal opportunities. Unfortunately, these steps are only noticeable

at policy level and its implementation in practice remains scarce.

Under the influence of Western thinking patterns towards disability, one can notice an evolution

towards more tolerance and inclusion towards people with disabilities. This is especially the case in

urban areas. But this trend is not yet noticeable everywhere in India, especially not in remote rural

areas. India has come a long way on the perceptions towards people with disabilities, but still has a

long way to go, if they want the rights-based model completely implemented as they describe in their

policies.

Methodology

22

CHAPTER III

METHODOLOGY

Introduction

Context

The context of this research is very particular. All the data was collected in one school in Tamil Nadu,

South-India. The special school, named Anbu Illam (which means ‘House of Love’ in Tamil), is

managed by the organization SCAD4. Anbu Illam is situated in a big campus in Cheranmahavedi, a

little village near Tirunelveli, in the most Southern part of India.

The population of Anbu Illam is very diverse. Children from the age of 7 until 15 with polio, impaired

hearing, learning disabilities, mental disabilities, developmental disorders, autism and cerebral palsy

are all admitted to this school. This year 37 children enrolled at Anbu Illam. The children and the

teachers speak Tamil. Only a few of them speak English.

Research population

The participants are selectively invited, based on similar characteristics. In this case the main

component is working in Anbu Illam with the same intellectually challenged children. This creates a

homogeneous group because the respondents show the same aspects in many ways, but they have

many differences as well (like age, gender, profession,…) (Krueger & Casey, 2000). A homogeneous

sampling makes it possible to describe this subgroup more in depth. In qualitative research the

individual experience is key, rather than the aim of generalizability and objectivity of the data. This

group of respondents is at the same time a diverse and heterogeneous group, thanks to their different

tasks and education. One opts for purposive sampling, allowing the selection of information-rich cases

(Mortelmans, 2007). In the selection of the participants, the representativity of the sample was not

taken into account. This because the purpose of this study is not to generalize the results for all staff

members in South India.

The group of participants5 consists of all of the staff members of the multidisciplinary team that work

in the special school 'Anbu Illam'. In total there are 11 staff members, 4 men and 7 women, between

4 More information about the organization SCAD can be found in Chapter 1.

5 An overview of the participants and their demographic information can be found in appendix 1.

Methodology

23

the age of 23 and 45. Combined they have approximately 26 years of experience in working with

children with an intellectual disability. The multidisciplinary team of Anbu Illam consists of four

teachers, two physiotherapist, a vocational trainer, a special teacher, a sports coordinator, a dance

teacher and one principal. All of the participants received a research summary, translated in Tamil,

after which they volunteered to this study.

Role of the researcher

The qualitative researcher needs to describe relevant aspects of self, including any biases and

assumptions, any expectations and experiences to qualify his or her ability to conduct the research

(Greenbank, 2003). As described by Van Hove and Claes (2011) the role of the researcher is bilateral.

On the one hand you have the ‘role as researcher’ as such. It is useful and important to develop a level

of self-consciousness that has you attending to your own behavior and its consequences. On the other

hand you have the ‘role as learner’. The learner’s perspective will lead you to reflect on all aspects of

research procedures and findings (Van Hove & Claes, 2011).

As a researcher I find it important to seek for deep level understanding, which can only be achieved

by profound and long-lasting observations. In observing and interpreting, I cannot ignore the fact that

I will always have a Western mindset, with an impact on the research that cannot be denied. “The

researcher is an active component of the study. The analysis does not emerge but is constructed”

(Brown & Clarck, 2006). Considering the context of the international organization SCAD which is used

to receiving students and volunteers from Europe, it was not convenient to handle this role as a

researcher. This due to the fact that volunteers tend to be active participants, while I tried to take the

role as observant. The staff members were not used to this approach, and it took a while before they

understood that I was mainly present as a researcher and an observant. I repeatedly made clear to the

participants that I was there to watch and learn. This was not always consistent with the expectations

of the staff members, since they are used to take the role of the learner. I wrote these observations

down, as well as my personal reactions in different research journals. These were useful to reflect on

the events and my thoughts afterwards. It was difficult to find a balance between this insider and

outsider position.

Collection of data

Qualitative research

This master dissertation is constructed in accordance with empirical qualitative research. 'Empirically'

because you determine by observation what happens in reality (empiricism). "Qualitative research is a

form of empirical research that can be characterized on the basis of the method of information

gathering, the type of analysis, the study design, the subject of research and the role of the researcher"

(Maso & Smaling, 1998:9) . In qualitative research, one can assume an open and flexible attitude, and

go deeper into the background of the collected data (Verhoeven, 2004).

Methodology

24

In qualitative research a lot of attention goes to processes of interaction and signification. Qualitative

research is a good choice when researching the underlying thoughts of the population and their

perceptions and experiences (Maes, Bruyninckx & Goffart, 2003). Researching the perceptions and

experiences is exactly what this study aims for.

Research design

The aim is of this research is deep-level-understanding, which is only possible thanks to all the

different perspectives collected through different methodologies. To try to get at the deepened,

complex understanding, three data-gathering techniques dominate in qualitative inquiry: observation,

interviewing and document collection (Van Hove & Claes, 2011). I have done three types of

interviews, namely semi-structured interviews, depth-interviews and focus groups. In addition my

observations and an extensive review of documents were used as additional methods. With all of

these different methods I want to create an image that goes beyond superficiality. I chose these

different methods because they complement each other where a certain methodology scores lower.

For example, with a focus group there is a risk that only the 'loudest' or more assertive voices will

speak the most. Some people would not say anything and therefor will not be heard. By adding the

individual interviews to the research design, I will be able to capture most of the voices and opinions.

Observations

When the researcher takes his first steps in a new setting, he usually does not know much about the

situation and where to look at to find answers for his research questions (Mortelmans, 2007). With

participative observation the researcher takes notes while observing the interactions and activities in

the field. It is a comprehensive approach to collect data in a different context. The notes describe what

happened in that specific moment, in that context, with which participants. This observation data will

consist of interpretations and comments of the observer, because the observer is constantly

interpreting everything around him/her. The observations made during this research do not aim to

provide added value in the research itself, but rather to get to know the children, the staff members,

the environment, the daily routines,... and may thus serve as background for the group discussion and

interviews.

Review of documents

Both in preparation for my research; during my stay in India to delve myself into the existing

knowledge and to answer questions; and during the analysis afterwards; I conducted a document

review. Reviewing documents gives information about the history and context surrounding of a

specific setting (Marchall, 2006). It is good for describing the values and beliefs of participants in the

setting. The biggest advantage is that is an unobtrusive method (Marchall, 2006). A document

analysis necessitates that data be examined and interpreted in order to elicit meaning, gain

understanding, and develop empirical knowledge (Corbin&Strauss,2008).

I used reports from meetings, formal policy statements of the government of India as well as of SCAD,

articles in newsletters and my own research journals. And of course plenty of scientific articles both

from India as from international (and Belgian) researchers.

Methodology

25

Semi-Structured interview

Qualitative interviewing is a common qualitative data collection method, which characteristically

involves questions and probes by the interviewer designed to encourage the interviewee to talk freely

and extensively about the topics defined by the researcher. Interviews are often described as varying

between the structured and the unstructured (Van Hove & Claes, 2011). In this study I conducted

semi-structured interviews, where the main questions were defined in advance, but where it was

possible to react flexibly and ask more questions to reach a deeper understanding if necessary. These

question are drawn up within the framework of the Qualtiy of Life-model. This model indicates the

level of well-being of a person (with a disability). It is a multidimensional phenomenon composed of

eight6 core domains, based on the principle that persons with disabilities should be able to participate

fully in all aspects of life (Buntinx & Schalock, 2010). These eight domains are influenced by personal

characteristics and environmental factors (Buntinx & Schalock, 2010).

The interviews took place in a neutral room on the campus where we were not disturbed. Each

interview started with me as interviewer, explaining the course and purpose of the interview and

going through the informed consent7. This was translated by the present translator. After signing this

informed consent the interview started. The interview was audio recorded. Each answer was

immediately translated shortly, so that I could anticipate to the answers. The interview took about 2

hours with a short break in between. The staff members were excused from their tasks in Anbu Illam,

to participate to the interview. Eleven interviews were conducted over a period of two weeks, 6

interviews were transcribed and translated literally, word by word, by the translator, 5 interviews

were transcribed based on the translations during the interview. Much attention was paid to the

choice of the translator, since it had to be a staff member of SCAD. To ensure the safety of the

participants and considering the ethics of the research, it could not be someone with a higher position.

Nevertheless the participants felt save enough, because they dared to give criticism when asked.

Focus group

Focus groups produce qualitative data that provides insight into the attitudes, perceptions, and

opinions of participants. A focus group is a carefully planned discussion, designed to obtain

perceptions on a defined area of interest in a permissive, nonthreatening environment (Krueger, 1994).

A focus group is a structured group interview, with a limited number of participants (6 to 12

members). The participants have a discussion about their ideas, thoughts, preferences and values with

respect to a defined topic. According to Krueger’s (1994) model, a focus group has the following

6 The eight domains are:

- emotional well-being – contentment, self-concept, lack of stress - interpersonal relations – interactions, relationships, supports - material well-being – financial status, employment, housing - personal development – education, personal competence, performance - physical well-being – health and health care, activities of daily living, leisure - self-determination – autonomy / personal control, personal goals, choices - social inclusion – community integration and participation, roles, supports - rights – legal, human (respect, dignity, equality) (Schalock,

7 See appendix

Methodology

26

course: the welcoming, identifying the subject, defining the rules of the conversation, starting with the

first question or statement. This process was followed during this research.

In total 3 focus groups were conducted. In the first group (n = 7) we had discussions about types of

intellectual disability. In the second group (n = 8 ) we talked about Quality of Life. In the third focus

group (n = 8) we talked about The Rights of Persons with a Disability. After the first focus group,

which served as a pilot study, the style of asking questions was adjusted. In research with focus

groups it is common to adjust the questions based on what had been learned from previous focus

groups (Krueger & Casey, 2009). Given the Indian context, where every staff member has many

different responsibilities, I did not expect them all to be present. At least 7 staffs were present with

each group meeting. The focus groups took place in a room of the school, on a Saturday afternoon. At

this time, there were fewer children present and it was feasible for the staff members to attend the

meetings. Different creative activities were used to encourage and stimulate the discussions. The

questions and discussions were translated by someone who also participated during the discussions. I

am aware this could influence the outcome of the translations, but no other option was available at the

time.

In-depth interview

In this research I chose for the qualitative interview-design instead of a structured interview. The

advantages offered by qualitative interviews are consistent with the goals and the atmosphere of this

research. The researcher encourages open questions allowing the participant to give spontaneous,

specific and detailed answers that are relevant for the research. The interview is largely driven by the

answers en thoughts given by the participant. The interviewer will explore these thoughts more

deeply by asking very specific questions. It is the task of the researcher to ask questions and dig for

underlying answers, as nicely put into words by Kvale:

“Knowledge is understood as buried metal and the interviewer is a miner who unearths the

valuable metal … The knowledge is waiting in the subject’s interior to be uncovered,

uncontaminated by the miner. The interviewer digs nuggets of data or meanings out of a

subject’s pure experiences, unpolluted by any leading questions.” (Kvale, 1996:3).

To achieve this, the researcher uses a range of questions to reach depth in the answer in terms of

exploration and explanation. An initial response is often at a fairly ‘surface’ level: the interviewer will

use follow-up questions to obtain a deeper and fuller understanding of the participants meaning. The

in-depth format also permits the researcher to fully explore all the factors that underpin the

participants’ answers: reasons, feelings, opinions and beliefs (Kvale, 1996).

I created open questions that allowed the participant to answer in the way he or she preferred. The

staff member, a translator and myself were present during the interview. Three follow-up interviews

with the same participant were conducted, each interview lasting more or less 2 hours. Because of the

intensity of this method, only one participant was selected.

Methodology

27

Method of Analysis

In this study the data are analyzed using a thematic analysis. In a thematic analysis one can effectively

summarize complex qualitative data by identifying major themes that repeatedly occur in the data. By

encrypting these topics, one is able to carry out an objective analysis (Van Hove & Claes, 2011). The

processing of the data takes place by means of selective coding. It looks for mutual structures and

relationships between different sub-labels and the link with the literature (Devillé, 2008). Throughout

this process commonalities, differences and dissents are mapped and the terminology used, the

context and the emotions of the acquired response are taken into account (Baarda, de Goede &

Teunissen, 2009).

Thematic analysis is an appropriate method for this research study, because the emphasis lies also on

the importance of practical outcomes and the “service of human flourishing” (Reason & Torbert, 2001,

p. 5). However, thematic analysis faces criticism, with scientists suggesting that it has “no particular

kudos as an analytical method” (Braun & Clarke, 2006, p. 97). Experience suggests that thematic

analysis is such a comprehensive term that some research described as thematic analysis fails to live

up to the expectations of qualitative researchers (Van Hove & Claes, 2011). In doing the thematic

analysis on the data I have collected, I followed the six phased process8 described by Braun and

Clarke. When evaluating thematic analysis, it is important to remember that the Braun and Clarke

(2006) version of the procedure may be substantially better than those adopted by other researchers

claiming to use thematic analysis (Van Hove & Claes, 2011). More importantly, due to the thematic

analysis I could make sense of a large amount of data and I was able to translate this into themes to

achieve readable, constructive and meaningful results.

Quality of Methodology

Validity is another debated topic in qualitative research. The internal validity of a study refers to the

meaningfulness of the research. This implies that the result of this research should be an accurate

representation of the attitudes and perspectives of the staff members towards children with an

intellectual disability. This was accomplished by a non-suggestive manner of questioning (Baarda, de

Goede & Teunissen, 2009). Most agree that we cannot create criteria to ensure that something is “true”

or “accurate” if we believe concepts are socially constructed. Some use the concepts of

“trustworthiness” and create criteria to demonstrate ways in which the researchers can claim that

their word is plausible or credible (Van Hove & Claes, 2011). In describing the trustworthiness of this

study I base myself on the procedures described by Creswell (1998, 201-203), which are often used in

qualitative research to contribute to trustworthiness (Van Hove & Claes, 2011).

Researchers bias. Because I am very involved in the data collection of this research and becaue

I have a relation with the participants where they consider me as a colleague and vice versa, I

have to be aware of my subjectivity and prejudgments. I will address researcher bias by

8 See Appendix 8 for a detailed subscription of the six phase process of Braun and Clarcke.

Methodology

28

reflecting on my subjectivity. By writing during and after the interviews, as well as asking the

translator to take notes, I will be able to get insight into and reflect upon my biases.

Multiple Session Interviews. The focus groups as well as the depth-interview were multiple

session interviews, where I have met the participants multiple times, which made a follow-up

possible. This created a possibility for the participants to reflect upon their own feelings and

beliefs, so they could share it with me in the next meeting.

Prolonged engagement. Because I was in the field for an extended time, more precisely 5

months, I was able to develop trust, get to know the culture and do persistent observations.

Because I spend such a long period of time in the school, the participants and children got

used to my presence.

Triangulation (Salmon, 2003, p. 24). By using multiple data-collection methods one can fulfill

triangulation. As described in the beginning of this chapter, I used 4 different data-collection

methods, namely interviews, focus groups, depth-interview and observations.

Peer review. Because SCAD is an organization with international contacts, I have met many

people, all with different perspectives and even research experience considering people with

disabilities. I often did some external reflection and debriefing with these people, to gain new

insights. Also a colleague student was present who was doing her own dissertation study. On

a regular basis we sat together for a peer review.

Besides the procedures of Creswell, I also took the quality criteria for thematic analysis into account,

as described by Braun and Clarke (2006)9. In every step of the research I examined if there was

compliance with the criteria. By following this approach I also increased the validity of the research.

In order to ensure the validity of this research, the respondents were pre-informed of the progress and

the purpose of the investigation. Also, the anonymity of the participants was assured and they were

protected from harmful effects. Each respondent was given the choice to participate and could stop

the interview at any time. Despite all this, it is not inconceivable that the answers are influenced by

social desirability (Baarda, de Goede & Teunissen, 2009). In addition, an exact repetition of this study

is almost unfeasible because of coincidences and the own interpretations of the researcher. However,

the various steps of the research can be controlled and reproduced to gain insight into the process that

led to the investigation findings (Mortelmans, 2007).

9 In Appendix 9 one can find the figure that summarizes the quality criteria which can be applied to a

thematic analysis.

Findings

29

CHAPTER IV

FINDINGS

Each research question was analyzed separately, based on a thematic analysis. Via inductive coding

different subthemes emerged for each research question. These subthemes were then clustered under

two or three main themes. The table below shows an overview of these sub- and main themes. Some

subthemes might return under several main themes, given the respondents' answers can be very

diverse.

In what follows each research questions and the corresponding themes are discussed and each

illustrated with quotes from the dataset. To ensure the anonymity of the participants, letters were

assigned to each respondent in a random manner. The vowels refer to male respondents, the

consonants refer to female respondents.

Research question 1 :

What are the attitudes and beliefs of the staff members of Anbu Illam towards

children with an intellectual disability?

Main themes Subthemes

Normal versus Different - Definitions

- Role of education

- Normalization

- Feelings

Commitment - Role of a teacher

- Education of the staff member

- Motivation

- Needs of Anbu Illam

Religion and Medicine - Causes

- Motivation

- Feelings

Findings

30

Research question 2 :

What are the perspectives for the future of people with Intellectual Disabilities

according to the staff members of a special school in South-India?

Main themes Subthemes

Opportunities - Jobs

- Independency

- Marriage

- Sports

- Rights

Invisibility - Jobs

- Dependency

- Marriage

- Sports

- Rights

Research question 3 :

What are the attitudes and perspectives of Indian society towards people with an

intellectual disability, according to the staff members of a special school in South-

India?

Main themes Subthemes

Findings

31

Burden - Immediate environment

- Poverty

- Gender

Inclusion and exclusion - Rights and laws

- Contact

- Social isolation

- (un)Conciousness and stigma

Table 2: Sub-and main themes within each research question

Findings – First research question

32

First research question:

What are the attitudes and beliefs of the staff members of Anbu Illam

towards children with an intellectual disability?

Theme 1: Normal versus Different

Both during informal conversations and during the interviews, the words normal and abnormal were

often used. They frequently refer and compare with what is considered as normal. It is notable that

'normal' is often used as a starting point and as a benchmark.

Figure 3: Overview of the sub-themes within the first main theme of the first research question.

Findings – First research question

33

Definitions

When the respondents were asked to define disability, it is notable that this definition often contains

the word ‘normal’. People with disabilities derogate from the normal, they are considered as different.

Respondent A, ♂ : “Those children who are physical, mentally are abnormal. That is

disability.”

Respondent E, ♂ : “It’s against normal, but they have some talents. The speed movement,

response reaction it’s very less in disabled children.”

Respondent U, ♂ : “Their activities are different from normal people. There is a Slight

deviation from normal. Even if it is slight, it is still a disability.”

Respondent G, ♀ : “You have to compare them with normal children to see the differences.

Normal children have normal IQ and are physically normal. Children with an intellectual

disability, they cannot think. They have no worries. They are not creative.”

Besides the use of the word normal, when defining a person with an intellectual disability, there is

often referred to a low IQ, being slow and that they show slow progression. Also they struggle to

understand things, although this latter comes especially forward when the staff refers to children with

a severe or profound intellectual disability.

Respondent B, ♀ : “They have a low level of IQ, they cannot understand anything.”

Respondent C, ♀ : “The IQ level compared to other children is low and the growth is very

slow. It is due to a problem in the brain.”

There appears to be a link between having a specific training about disability and the way of defining

children with disabilities. It stands out that these respondents with a specific education, they apply the

strengths of the children and start from their talents. In their descriptions is also referred to 'normal',

but there appears to be a subtle distinction. In these cases the child with a disability is equated with

'normal people'.

Findings – First research question

34

Respondent H, ♀: “When someone has a disability physically or mentally, they are called

disabled. But we should not look at it that way. We should not call them like that. They have a

spirit, they have a heart which is full of love.”

Respondent U, ♂: “We don’t call it disability, we call it differently abled. But we should not

say to the child ‘I’m normal, you are differently abled’. Everyone is normal and everyone has

some kind of disability.”

Respondent F, ♀: “The IQ level is low, further they are the same as normal children. The

disability is nothing. But the children who cannot do anything on their own, that is a

disability. I don’t want to define people as having a disability. Because they deserve dignity

and the disability should not define them. Because it’s not their own fault. They have their

own control, dignity like normal persons. Of course they have a level that is more low, but why

do we have to tell them that they are disabled? If you are with a disabled child, they are good in

many things. It’s just us who are disabled in not giving them good care. A child with

disability can show their love more. Because normal children will show their love when they

receive something. Whereas these children, they show their real love.”

Role of education

Each and every respondent indicates the importance of education. The role of education is twofold.

On the one hand there is the teaching of the basic skills to children with disabilities so that they can

become as independent as possible. This is related to ADL-skills (Activities of Daily Living). The term

“daily living skills” refers to a wide variety of personal self-care activities. These relate to the

following areas: home, school, work, and community settings. The emphasis is on daily

living skills, like food preparation and personal hygiene. This needs to be performed on a

regular basis to maintain a reasonable level of health and safety. The main goal is achieving

adaptive functioning, where the individual can take care for self and function independently

(Stabel, 2013). The staff members indicate that this is the first priority of education for

children with disabilities.

On the other hand there is learning more difficult things such as mathematics and vocational training.

But this only goes for mild intellectual disabilities, who have the chance to find a job and thus live

independently and that must be prepared and trained for this.

Respondent O, ♂ : “It is very important, because it’s a basic right. Based on their level,

education should be given. According to their assessments and interests.”

Findings – First research question

35

Respondent D, ♀: “Rather than giving them the traditional education we have to train them

some skills and values essential for their life.”

Respondent I, ♂ : “It is important to first teach them to look after themselves, how to be clean

and how to express if they want to go to the toilet. After this comes education, this is

important too, but it will take longer to learn things.”

Respondent H, ♀: “Education is important. More than that, they should be given vocational

training to help them for the future. And at the same time he should know his name, his

father’s name, his address, and he should be able to read the sign of the bus if he is out.

Education is very difficult for them. Even if they are grown up, they are not able to read

anything. Some vocational things, they have a plan it seems to make biscuits. They stay in the

shop and they sell everything. The poor families, they cannot educate such children. They are

worried and they want a job for their child. They get loans for the mentally retarded children

to run a petty shop. So he must know a few calculations. They are training them for that.”

The participants believe that special education is a necessity for children with disabilities. Inclusive

education would not be beneficial for these children, because they would not learn anything and

would receive no specific training. They do not see the benefits of inclusive education and indicate

that this will not work because of the current Indian school system, which is very competitive.

Respondent G, ♀ : “It’s not realistic. Severe and profound, they have to go to separated school.

Even moderate intellectual disability is not possible, it is not realistic. It is not realistic for any

intellectual disability. For physically challenged it is possible.”

Respondent C, ♀ : “It is difficult for children with an intellectual disability. In a normal

school the teacher will concentrate on the normal children. They have not enough attention for

the children with an intellectual disability. There will always be a big difference. They can

only go to special school, there they’ll get more care. You don’t do more for them by sending

them to a normal school.”

Respondent E, ♂ : “A person with an intellectual disability or for example down syndrome,

will not be able to go to a normal school. Because he cannot follow in that particular schooling

system. Because here in our society, it are written exams. When someone cannot even talk,

how can you expect him to write? The school system is not ready for these changes, because

everything is based on written words. There will be a lot of discrimination in the class. They

don’t learn much in a normal class, so they come back to the special schools. It will be wasting

time, wasting the days when he will be sent from class to class. In a special school he can learn

faster.”

Findings – First research question

36

There was only one respondent who described inclusive education in a positive way, in which the

social inclusion approach very clearly came forward. Upon questioning, however, it turned out that he

thinks it is a good principle, but he does not find it realistic to realize in India.

Respondent O, ♂: “In inclusive education, they learn from each other. For example, a

differently abled person sitting there, and a normal person sitting there. This particular person

learns from the normal person how to react. So this person learns how to behave in society.

But they can also learn from the differently abled person. That is the main purpose of inclusive

education. The main goal is not ‘how can he be like him’.”

Normalization

In this case it concerns the concept of normalization within the framework of the medical model. In

this medical model, the focus is very much on the normalization of persons with disabilities. One only

sees the differences, what is abnormal, and what has to disappear for the benefit of the disabled

individual and for society. Within the medical model it raises the question of how to recuperate the

disability, how to "normalize" people (Rusch & Pfeiffer, 2003). There is an emphasis on rehabilitation

where disabled people have to conform to normal standards of life and behavior (Wright, 1983).

C: “Basically we can’t judge how much time will take to heal the mentally retarded students.

Some improve quickly, and some by three months and few not even improve by two years. The

main thing is through special education we can train them in leading a normal life. We want

to make them do the activities of a normal man.”

F: “To offer them to study, to offer them that they can train themselves. They should be able to

play. And we should offer this until they are better. There should be more good education at a

good level.”

D: “The teacher should bring them up to the next level in life. For example: severe to moderate

or moderate to normal state.”

G: “For example, there used to be a girl here and she progressed from severe to moderate to

mild. She was trained in tailoring and now she is capable of taking measurements and

stitching girl’s garments.”

Findings – First research question

37

Feelings

When respondents express their feelings toward children with disabilities, many indicate that their

feelings have changed over time. Some of them were scared of the children at first, but as they worked

more with them this changed to more positive feelings. Many indicate that they find it a great pity for

the children. Children with disabilities are viewed differently than children without disabilities.

Feelings of pity, feeling sorry or sad, seeing them as pathetic... are the most appointed.

C: “I feel very sorry for those children. I don’t know to explain it. I have no words. It’s difficult

for them as well as their parents. Especially female children are very pathetic. First when I

came, I don’t like the job. But now when I see this children my negative thoughts are

minimized. I got more patience after coming to this job.”

A: “When I see them I feel for their future. Even a normal human cannot get a good partner. I

just feel like why are these children like this?”

U: “I feel very sad and sympathetic with the children and parents, especially in muscle

diseases. Because children with muscle diseases are pathetic. Slowly they become weak.”

F: “She was scared when she saw them at first. She couldn’t categorize those children as

disabled. Now they are ok.”

Findings – First research question

38

Theme 2: Commitment

In discussing their jobs and tasks at Anbu Illam, it emerged in various subjects that commitment is

very important for a staff member in Anbu Illam. The sub-themes discussed below are each viewed

from this standpoint of commitment.

Figure 4: Overview of the sub-themes within the second main theme of the first research question.

Role of a teacher

The participants see the primary role of a teacher in general in Anbu Illam, as someone who interacts

with children in a warm, constructive manner. References to being a parent, a mother, family, ... often

were addressed. The teacher must be involved and show engagement. What they find particularly

important is that the teacher is independent and looks for solutions to support the children as best as

possible. In second place comes the importance of teaching basic skills and self-reliance among the

children. And by exception the teaching of language and mathematics skills.

Findings – First research question

39

O: “The teacher has to show love and care for these children, because they need you. Illam

means home. We have to be their second home. We have to provide the same care as the

parents. The teacher also has to show responsibility. A lot of responsibility is given by the

organization, so you must perform that way.”

H: “Love the children and treat them with love and patience, you have to cope with difficult

behaviors. You have to train one skill and focus on it. Only after completing start with new

goal.”

I: “A teacher has to be a parent of the children. We have to watch the children like our own

children. We have to see them as one family.”

These descriptions, however, are the descriptions of ‘the ideal teacher'. Some critical staff members

indicate that the level of commitment at present is too low and that there could be achieved a lot more

if everyone showed additional committed.

E: “As they work for the social being, they should have involvement over their work. There are

many of them who are working without dedication and commitment. Some of them come like

college lecture in time and go out by time. It really pains. No involvement for their work.

There has to be more self-discipline. They should be committed. They should accept their

responsibility. To do goodness to the students is in their hand. They should not pretend or

should work only when some higher official are there.”

O: “More commitment of the teachers is needed.”

Education of the staff member

The staff of Anbu Illam is very diverse. There is a dance teacher, a sports teacher, physiotherapists and

teachers. I noticed that many of them carry out a function where they are in fact not trained for. They

indicate themselves that they find it very unfortunate that they have had no special education or other

specialization, because they are facing with difficult behavior on a regular basis. Specific training

could help them to better cope with this. They say they are learning most by gaining more and more

experience.

B: “When I came here to work, I joined as a nurse, they asked me to join in Coimbatore world

school. But here for Anbu Illam as no one was there for nursing, our Amali mam aksed me to

join in Anbu Illam. Now I teach in the severe class.”

I: “I studied Bachelor in Computer Science and diploma in dance. I am working in SCAD for

three years. I learnt dance for normal people. It was challenging for me to teach children of

Anbu Illam. After my coaching I have taken children to state wide competition and they came

Findings – First research question

40

first in the state. After coming to Anbu Illam I learnt many things from this place. I want to

do special training (Special Bachelor Education). My family has to support me.”

C: “I joined here at 2004 after completing 12th standard. I was unable to continue my

education. Further as I was very young when I came here Prince mam gave me notes and I

taught the students then. I read some books about the mentally disabled children.”

D: “I am a bachelor education graduate in History and I am new to this atmosphere. I had

some experiences in teaching physically challenged and some special children with disabilities

by using sign language, symbols, pictures, etc. But I feel that it would be much easier to

handle these students if I have done a special bachelor course for this purpose.”

Many staff members want to follow a specific training in the future, but declare immediately that this

is difficult to accomplish. There are several reasons for this. Either they refer to family and their

household, sometimes the cost of the program is put forward. Also, the combination of work and

further study is very difficult, given the wide range of tasks they fulfill within SCAD. The participants

indicate that SCAD is very supportive in further specialization. Physiotherapists are regularly

supported by volunteers and organisations from abroad. SCAD sometimes pays for an extra

education. Much depends on the coordinator of Anbu Illam (which changes regularly) whether he /

she encourages it.

C: “I can do these courses but I have to quit my job, because I can do it only in regular

education. I am aged and I want to look after my family. So I am unable to do.”

H: “I want to do a master of education next year. I am willing to do it in correspondence

course, so that she can work and learn at the same time. The correspondence course is all day

in the weekends in Chennai. My family and SCAD are supportive.”

F: “I followed a course on multiple disability. My boss encouraged me to do this. Because he

always said if you know about the special thing, some sort of course, than you can manage

better and you can manage the situation with the children. It was a six months course and I

did it one year ago. Scad payed for it.”

U: “I did extra technical training during 2 months in CP techniques. For extra courses, he

attends medical conferences, seminars,… In the first year we had autism classes. People from

Belgium came by. In the future I want more in CP. It is a job related course.”

Findings – First research question

41

Motivation

An important aspect related to commitment is what the motivation of the staff was, to start working in

Anbu Illam. Many participants obtain their motivation from the children. This is an inexhaustible

source of motivation, considering that there can be no school without the children.

B: “The moment I saw these students, I wanted to work with them. I want to be responsible for

these children’s life.”

H: “The love that the children bare for me.”

U: “When I attended, they interviewed here. Naga encouraged me. It gives satisfaction that

the mentally retarded children are here. From that I get the motivation.”

Their motivation proved not to be an established fact, but show to be evolving. For some, the

motivation when starting to work at Anbu Illam, was completely different than what

encourages them now. Not to everyone the initial situation was as easy to cope with.

C: “First I came here to support my family. But many staff quit the job but I don’t feel like

that. It’s my passion to change the students so the students are my motivation. I like

challenges for example a special educator didn’t agree with admitting a particular student as

he is very playful, running here and there. He used to cry continuously at the beginning. But I

said I can do some changes in him. I trained him and now he is showed tremendous

improvement. He never miss the school.”

D: “At first I was afraid but after working for a week I involves myself to the field. The faces of

the pupils makes me to serve for them.”

F: “The moment she came here for Anbu Illam, she did not like it. Because it stinks, it was not

clean. For 3 days did not take any food, although she was working hard. She did not like it

because of here education she was thinking why should I do this. She was analyzing.

But there was a person, a man, and he leaded the project. And he gave some motivation words.

Findings – First research question

42

“Maybe you can do the best for the children, why don’t you do that? Just do your work”. And

this kind of motivation words, made her think. He asked her to try for one month. And as she

worked with these children, she felt the affection and the love that those people have for others.

And they don’t know how to lie. Although they have some bad habits, if you correct them you

can change them. So she continued here. And now she has self-motivation to work here. She

works here for 4 years and in this 4 years she didn’t take any free days for personal reasons.

Because she kept on thinking about these children. When she would go somewhere maybe

something would happen to the children. So she just stuck to that.“

Needs of Anbu Illam

Before this subtheme is further elaborated, it is very important to underpin that the staff points out

that Anbu Illam, compared to other special schools from the region, is very well equipped.

Nonetheless, it is the staff that knows best where the needs are for Anbu Illam, to provide even better

care for the children. These staff members also have their dreams on how Anbu Illam can grow and

evolve.

C: “Everything is stimulating. The infrastructure is very good in Anbu Illam and it is very

stimulating. Totally it has a very good infrastructure and all the classrooms are fully equipped.

Such a kind of facilities are not available anywhere. Classrooms, ground, toilet facitilites and

all sorts of therapies are available”

F: “Quality of the staff which will change the quality of the children. What they have should be

replaced by new things.”

E: “Specialized teachers in the particular area could help them.”

O: “A lot is there in Anbu Illam, SCAD provides a lot. Other school don’t have so much

facilities.”

Arising in previous subthemes several needs were already addressed. Namely, that teachers should

show more commitment. That there is great need for specialized staff and more staff, especially

teachers. In addition, in the subtheme around the education of the staff, they indicated that they

would like more specific training courses offered by SCAD. They point out their self, that the above

needs are very important and should be a priority. The respondents also indicated some material

needs, such as customized tables and chairs for the different ages present in Anbu Illam and more

Findings – First research question

43

educational materials and teaching aids. For this question, I asked what their dreams are, what they

want for Anbu Illam., if they had a lot of money.

I: “Healthy food is very important, sometimes they don’t get anything at home. Same facilities

should be provided as in Belgium. Everything that is new to the market. New play materials.”

F: “They need colorful furniture’s. Green garden with colorful flowers. Rich costumes and

dress and uniforms. Different play materials, a variety. Materials that make sounds.

Realistic/real materials (like fruits and money), New technology, like laptop, Ipad, TV, Taking

them to the cinema or a theme parc or on a field trip.”

C: “50% of materials are available now. We had numbers, toys, flash cards, ADL materials.

Many things were available but it was damaged. If I can dream I want separate chair and

benches, many black board, notes, crayons, toys, story books, duplicate money, art material for

vocational training and new TV, computers, instruments.

Theme 3: Religion and medicine

During conversations with the staff members I noticed that many staff are well aware of the medical

aspects of disability is. Enumerating the causes of disability, was no problem.

Besides this medical insight often God and traditional insights as karma and sins are placed. I

deliberately choose to not to place God and karma (here under the collective term of religion) versus

medicine, as the staff describe it as complementary to each other. These two concepts can en do coexist

in India.

Findings – First research question

44

Figure 5: Overview of the sub-themes within the third main theme of the first research question.

Causes

The staff members divide the reasons for the occurrence of an intellectual disability under following

categories: prenatal causes, causes during birth, postnatal and supernatural causes, as described in

Figure 6. The prenatal causes mainly focus on medical causes on the one hand and environmental

causes, as well as causes with respect to the mother, on the other hand.

Additionally, the staff members refer to supernatural powers such as God or Karma. After all, God

would have created the child as it is, thereby phenomena as a disability cannot be questioned.

Although most respondents mention both God and Karma, they have no preference concerning the

traditional beliefs. Yet, according to the respondents, these beliefs are still strongly alive in their

culture.

F: “Environmental pollution, family situation, problems with delivery when they use to much

forces, stress of the mother, wrong medication, when the child is not looked after when he gets

a severe fever.”

U: “Mainly 3 causes only: relative marriage, nutrition problems and drug addictions. The

other causes are heritage from family. Then freedom baby, like forced delivery. And if the

mother takes medicine when the child is conceived.

Findings – First research question

45

H: “During pregnancy, when they take the wrong medicine. Only the mother. If the parent

has positive blood and the other one has negative blood, then they have mentally retarded

children. And also malnutrition.”

B: “Relation marriage, insufficient of oxygen, heredity… then… when a child is taken out of

with the instrument which they pull the child out in the womb, it may affect the brain of the

child. And also malnutrition, of the child during the pregnancy period. We can categorize into

three, first in the womb, second during the birth and after the birth. Or it may be a sin of the

parents… a curse… I don’t know whether it is right or wrong. May… or may not be…”

Findings – First research question

46

Figure 6: Overview of all possible causes of disability, according to the participants.

Motivation

The subtheme ‘motivation’ was already discussed in the previous section, in which was referred to the

motivation the staff gets from the children as well as the motivation to make money and maintain

their families. In addition to these motivations, also the motivation of God was mentioned.

Prenatal medical causes:

Heredity problem

Blood related marriage

Problems with chromosomes

Attempting abortion

Different blood group of

parents

Deficiency of vitamins

No access to medical

assistance or medication

-

Findings – First research question

47

D: “I feel dedicated and happy to work here because if we work for these children God may bless

us.”

A: “I find that it is a blessing.”

Feelings

The topic "feelings" was also previously discussed. In this case, it refers to the feelings the participants

have towards God, towards the fact that such children exist are that they suffer so hard. They ask

themselves, "Why, God?". They look for answers to something they cannot quite grasp. These

questions and thoughts towards God coexist with their solid medical insights.

B: “God has created these children. I always want to help in such a way I can.”

I: “Sometimes I feel very sad and I curse God. Why did He create them?”

H: “I wonder why are they born in the world? Why has God created such children?”

Findings – Second research question

48

Second research question:

What are the perspectives for the future of people with Intellectual

Disabilities according to the staff members of a special school in South-

India?

The second question is divided into two themes, 'opportunities' and 'invisibility'. This research

question relates to the future opportunities that people with an intellectual disability may or may not

be within the Indian society. The following subjects will see reappear under two themes: job, (in)

dependence, marriage, sports, festivals and rituals, and finally Rights.

Figure 7: Overview of the main themes and underlying subthemes of the second

research question

Findings – Second research question

49

Theme 1: Opportunities

In discussing the opportunities of people with disabilities there is as good as unanimity

among the respondents. It appears that only children with mild intellectual disability are

given opportunities offered in the Indian society. However, even with these opportunities, it

remains not an easy road.

Jobs

Children with a mild intellectual disability can get vocational training from their 14 years,

offered at Anbu Illam. In vocational training the child gets taught a specific skill. Often does

this connect with his / her interests or talents. The purpose of the vocational training is that

the child acquires the skills to such an extent, so he / she can find a job and thus can

contribute within the family. In contrast, people with physical disabilities have a lot more job

opportunities.

U: “They are more interested in mobiles and vehicles. So cell phone recharging. Some children

send messages. That is actually very difficult. They do it because of their interest. And

gardening work. So these 3 things: gardening, mechanical and cell phone. The mild category,

only they can write an examination for getting a job offer. They must pass 10 standards. So to

come up to 10 standards is very difficult. If they have a deformity in the hand, they are given a

writer and those people get past. But if they have to pass the examination, it is way too

difficult to get to 10 standards. So for getting a job, the minimum qualification is 10

standards. These people are not able to pass the 10 standards.”

F: “In any field they can work in helping. Nursery, computer, workshop, restoring bikes,

…But not in teaching. In the future, the society has to change their mentality, if that is the

case then there will be more job opportunities. Because in system works, some of them expect

perfection but that’s only possible by normal people. Above the age of 14 I give vocational

training, like nursing, gardening, train money, computer, craftwork.”

Findings – Second research question

50

Independency

This topic is in line with the previous topic. As soon as one can acquire a job, one can obtain

(a form of) independence. But it rarely happens that the person with an intellectual disability

will be completely independent, given that he / she will often continue to live within the

family.

B: “They can keep petty shop or workshop and earn little money.”

E: “SCAD offers vocational training here in Anbu Illam, but also in the villages. Things like

tailoring, running a cycle repair shop, nursery gardening, crafts and so on. I have heard now

around 100 people lead an independent life. Most of them just have physical disability. For

people with intellectual disability it’s more difficult.”

U: “The government is giving scholarships to mentally retarded children, so the parents can

save that amount at least. Every month they are given so if they save that amount and when

they grow up with that amount, they can start a small business or something like that for the

children.”

Marriage

Although very rare, the staff members know a few cases in which a person with a mild

intellectual disability is married. It often involves girls who get married off and the

respondents indicated that this is often not a good marriage. Although it happens, the

respondents clearly suggests that marriage for persons with an intellectual disability is not a

desirable situation. For people with physical disabilities it appears not to be problem to get

married.

C: “For mild it is no problem to marry. But people will say ‘Why do you behave like the lose?’.

There is a high chance of inheritance, therefore it is not good for them for marry.”

H: “The mild group, they are married but their offspring, their children, are also born down.

The husband is normal, the wife is mildly mentally retarded and the child too. It is difficult

because he has to look after the wife and child also. He has to take care so it’s very difficult for

him.”

Findings – Second research question

51

Sports

In recent years, a lot invested in sport. Sports competitions for children with special needs,

seem to be multiplying. First, it gives the children a lot of satisfaction and recognition, which

is good for their self-esteem and self-confidence.

C: “There is good scope in sports. They can shine in it.”

E: “I support for these type of children. That’s my dream. The awareness of sports should be

reached to everyone for these type of children. Because they learn discipline, and coordination,

and perseverance. And when they win prices at competitions, they are very proud. They smile.

They are happy. Their family too is happy and proud. And I am too.”

Rights

As became clear in the literature, there are many laws and rights for people with disabilities in India.

These laws are unfortunately not sufficiently been put into practice, so therefore not all rights are

respected.

D: “The rights are not most important. Because they are not mentally fit. Because they don’t

know how to get the rights. They don’t even know rights exist.”

H: “They will be getting more opportunities, the persons with mild intellectual disability.”

F: “There are laws but no one listens to that. Once she was travelling with someone with a

physical disability in a bus and she was fighting for a seat. But nobody wanted to stand up.

No one is ready and no one listens to the laws.”

Theme 2: Invisibility

The first part shows that people with a mild intellectual disability are offered a lot of opportunities. It

still depends on the person himself and his surroundings to what extent he / she uses these

opportunities.

This story, however, changes completely when we talk about the future prospects of children with

severe or profound intellectual disability. We can barely talk of opportunities. These children are

overlooked, kept hidden, ignored. They are invisible.

Findings – Second research question

52

Jobs

The main focus in children with severe and profound intellectual disability, is learning ADL skills.

These children often do not reach to learn specific jobs kills and they rarely get vocational training.

This means that they have no chance to find a job.

E: “For the severe, there is no chance for them. Only simple works like fetching water in a

hotel, buying tea for an office. In the field of agriculture, he can do. Manual work he can do.

But almost no payment for it.”

U: “They can only be used as helpers. They can be used to take things.”

H: “Only mild people can be trained. They can be given any training to improve their life. But

severe, nothing can be done. For severe and profound, training cannot be given.”

Dependency

No job means no income and therefore dependency. Children with severe and profound intellectual

disability live their whole lives with their mother. Often they are locked up in the house because both

parents have to work to earn enough money.

O: “There are some situation occasionally where the children are locked in the house. In some

communities they are used to do that. But more than 80 percent is locked. Because there is the

fear that the child will run away from the home, because they have a severe intellectual

disability. So they keep them safe in the house. It are mostly Moslim people who lock their

child. Some people don’t even want to say they have an MR-child at the home. When our

people go there and ask, the particular child is fine and they say they want to keep the child in

the home. Also medication is there. Some parents say they don’t sent their child away, because

it needs intensive medical care. One family said if the child will bleed, the child will die. That

is why they keep him in the house.”

A: “Maximum they depend on their family support. They won’t be alone.”

U: “So only the mild. The severe they have to be at home. They can save the money. Any

guardian can be put in charge of the children in severe cases. But if it is severe and moderate,

nothing can be done. Only the money will go to the guardian.”

Findings – Second research question

53

H: “If the parents cannot take care anymore, they put him in an orphanage.”

Marriage

As it is exceptional for people with mild intellectual disability to get married, it goes without saying

what this means for people with severe or profound intellectual disability. The respondents cannot

imagine them getting married. In addition, they indicate that it probably will not change in the future.

C: “Marriage is not a right for them.”

U: “They cannot get married. It’s not possible.”

Sports

Because it is so difficult to learn things like rules and specific techniques, there is no future

in sport for children with a severe disability. They will often play at school and practice

along with the children with a mild intellectual disability, but they do not take part in

tournaments.

E: “I find it difficult with the severe mentally retarded children, because I have to give all the

demo myself as it is very difficult for these children. If I want the students to jump, I have to

jump. If I want the students to run, I have to run with the students. One day he teaches them,

the next day they forget. Again and again the practice has to be carried out.”

Rights

Although there is no distinction in the laws and policies between mild, severe and profound

disabilities, it can be said that the current range of laws and rights only concern for people with

physical and/or mild intellectual disabilities.

B: “There are the no opportunities and with severe intellectual disability not the same

opportunities are given.”

H: “Even in the busses they don’t get proper seats. They are not treated with kindness.”

Findings – Third research question

54

Third research question:

What are the attitudes and perspectives of Indian society towards

people with an intellectual disability, according to the staff members of

a special school in South-India?

Theme 1: Burden

Since the staff is part of society, they can assess how society thinks about and acts with people with

disabilities in general, and people with an intellectual disability more specific. The respondents

indicate that the vast majority of the Indian population is still very negative towards people with

(intellectual) disabilities. The community is very reluctant to have contact with people with disabilities

as they are considered as a burden. A burden on the family, a burden to work with, a burden to

participate with,... This burden may be exacerbated by determining factors such as poverty and

gender.

Figure 8: Overview of the sub-themes within the first main theme of the third research question.

Findings – Third research question

55

Immediate environment

This topic describes the vision of the immediate surroundings of the staff members towards

people with intellectual disabilities. ‘Immediate environment’ refers to parents, husband /

wife, children, inlaws, friends, neighbors. Through comments from the immediate

environment, can be deduced what their vision is. The environment of the staff appears to

be supportive, ignorant, or disapproving.

The environment is considered as supportive as they show that they are proud that the

respondent works with children with a disability.

I: “My family people encourage me. My father is very proud. They are all happy that I’m

working here.”

D: “They are supportive and good. They feel proud to see me working for children and are

supportive and make good remarks.”

H: “They are all happy. They say it is a blessing. It is a real service. Before they did not know

the value of it. They are also interested and they are asking what I am doing with the children

and what I’m teaching. They ask if they can go to a normal school. I explain that when there is

improvement, they can send them to normal schools.”

Some staff have chosen not to inform their environment about the fact that they work with children

with disabilities. This is to preserve them from any worries.

A: “Only my wife knows that I am working with special children. My family members doesn’t

know about this. I won’t say anything to my parents. My parents only know that I’m working

in a school. My wife asks me to be kind with the children. Don’t beat, she used to tell like

that.”

Findings – Third research question

56

F: “My family members know that I works at SCAD. But they don’t know that I work with

disabled children. Because my mother doesn’t know a thing about disabilities. My sister knows

I am working in Anbu Illam, and she was in shock and cried. After my sister told my mother,

her mother is happy about it. Of course now her mother knows she worked with the disabled

children, but she is not more aware of the disabilities. If I don’t share the things which are

difficult, my mother will not worry.”

There are also people from the environment who react disapprovingly. They do so by giving negative

comments about the function of the staff member and by highlighting other jobs that they find better.

The better jobs are, according to them, government jobs (higher income) and jobs in which they do not

have to work with people with disabilities. This group is regarded as very difficult to work with.

G: “One day my brother-in-law came here and he cried when seeing this special children.”

E: “A physical director, he was my classmate said that why do you go after these children

rather than switch to colleges or some other school. Even he called me to the college so that I

can be free and happy.”

B: “Being a nurse and modifying my field for special education, my family members cannot

allow. My family people feel that it is not like working in the hospital. I got a certificate in

nursing… If I go out of this institution I can work only in the nursing field.”

Poverty

SCAD is located in a rural area. The staff work often in remote villages, where they face poor

families. The staff is aware that there are more poor people with disabilities. This is in

accordance with the literature.

Additionally, the correspondents indicate that wealthy families can provide better support to

their child with a disability. They have more possibilities and can give their children better

opportunities. As mentioned several times before, poor families must often lock up their

child in the home. Most poor families, however, will do everything within their power to

support their child.

Findings – Third research question

57

O: “The percentage of intellectual disabilities is more high in the poor areas. Poor people,

they find it difficult. Rich people undertake more. The poor may take Gods curse. The rich may

see it as a physical problem. With rich there is more acceptance. It’s God curse, that is how

the poor take it. And the rich they will blame it on someone else.”

C: “The rich people they have more chances. Some rich parents will even buy materials for

school, so their child can learn more. This is not with poor families.”

Gender

One factor that the disability aggravates, is gender. Girls with disabilities are especially vulnerable.

They face a bigger risk to be raped. This is one reason why it is mostly girls that are trapped in the

houses, to protect them. Women with a disability have a very weak position in Indian society and this

proves to be made use of.

C: “When girls with a disability grow up it becomes a great problem. They have behavior

problems. Their bodies change, they’ll have their menstruation but the severe child cannot

take care of herself. Mild and moderate will cope if they have learned to take care of

themselves. Boys have no problem with that. But they have other behavior problem, like

sexual problems and sexual feelings.”

U: “Boys are more mentally retarded, it seems. So girls, they are not allowed to go out of the

house. They keep them inside. The girls are not sent out, the parents do not like this. Because

the girls could be misused, because of their learning disability.”

O: “For girls, having a severe disability is very dangerous for girls. They cannot be allowed to

mingle in the society. Men will abuse these children.”

Theme 2: Inclusion and exclusion

The attitudes and perspectives of Indian society can be placed within the spectrum of inclusion and

exclusion. Depending on various elements one moves within this spectrum, to a greater or lesser

inclusion. These elements include gender, poverty, opportunities through laws, participation, contact,

awareness, isolation, stigma, ...

(un) Awareness and Stigma

Findings – Third research question

58

Rights and laws

If one merely looks at the laws that exist in India, one has the impression that people with disabilities

have many opportunities and are well integrated. However, the correspondents indicate that this is

not the case in reality. People with disabilities do not get many chances, especially people with a

severe intellectual disability. They are not integrated into society, on the contrary, they are excluded.

There is barely contact between the villagers and a person with a disability. Although the respondents

indicate that already they notice a lot of improvement, they immediately emphasize that there is still a

long way ahead.

I: “The opportunities are the same. There are toilets for men and women, and busses too. There

is space for women and men. They get equal opportunities. Even with jobs, there are no

differences in requirements. We are beyond the gender case. So both sexes, men and women,

are welcome. The policies are being provided in the field. But how it is practiced by the people

it is different. If you come to the practical of it, it is different. It is not practiced in many

places.”

Contact

If the following question is asked to the staff members: "With children with intellectual disabilities

who do talk to or interact with during the day," that list does not appear to be extensive. Unanimously

each respondent lists the main caregivers, most often the mother. Next comes the school, with the

teachers and classmates. There is even emphasized that outsiders are often unfriendly and they

approach people with disabilities as different and abnormal.

Findings – Third research question

59

U: “Their relatives, their friends and other persons who know him, they might treat him

friendly, but the others definitely treat them in a different way.”

F: They talk to the person who spends time with them. The mother in the home. If she is busy

with other children. The child spent more time with their classmates rather that the teacher. If

they’ll interact with normal children depends upon the family control, some of them make

them roam with others, some of them will keep them at the home. Mostly the normal children

will not include the intellectual disabled children.

Peers from the environment prefer to have no contact with children with an intellectual disability.

And not every family member or close neighbor is part of the social network of those with a disability.

The social network thus appears to be very small.

E: “In the school they’ll talk with the teachers. They have friend also, in school. They have

their own sign or code language They enjoy being together with their friends. In the home to

their mother rather that to their father. Because men do not have patience. He’ll get tensions of

the behavior of this child. Children with an intellectual disability they want to play with their

neighbor children but they don’t accept these children to be their companion and will make fun

of them. One of the mothers expressed her son’s miserable condition. Even their children

relatives don’t accept him. But he longs to play with them.”

Social Isolation

Within the Indian culture, it is important to participate in traditional rituals and festivals. It

shows that you are part of society and hence that you are integrated and accepted. Children

with a mild intellectual disability are sometimes allowed to participate in these rituals,

although that depends on the parents and how they advocate for inclusion of their child. For

children with severe or profound intellectual disability, being present at a ritual or festival often

unthinkable. As a result they are excluded from daily life and society. Social exclusion and

imprisonment fits much more with the current reality in South India.

F: “Festivals or functions in the family. We keep our normal children in the front, but they

keep their child away because they don’t want others to know their child is disabled. So, that

can be changed. In the society as well as their status they can be treated as normal. This is

what she wants in the future.”

Findings – Third research question

60

I: “The common society, they excluded them. People they won’t accept them, they are excluded

by society. So emotionally they are more disturbed and when they are given importance, when

they are trained also, they will do their things and be more happy.”

(un)Conciousness and Stigma

People from the villages know hardly anything about (intellectual) disabilities. Usually they barely

come in contact with people with disabilities, just because they are hidden. There is a great

unawareness among the population. Respondents also indicate of themselves as being very ignorant

about disabilities, before they started working in the sector. They only became aware after meeting

and interacting with the children with an intellectual disability.

As the average Indian man (or woman) has hardly met anyone with an intellectual disability, they will

rather keep away when confronted. They might even be afraid and show avoidance behavior. There is

still a lot of stigma, which only reinforces this behavior.

F: “This mentally change will take too much time, but will come. They should first be aware of

these children. Only God can change. Because when we explain it and give them awareness,

they won’t understand. But only God can change their minds.”

C: “The awareness has increased remarkably, parents send their child to therapy now. The

policies of the government are much improved. There are more job opportunities for people

with a physical disability, there is now a higher priority. People with disabilities are taken

outside, thus there is more awareness. Previously they were afraid to talk about it. Now even

in remote villages they dare to ask more questions. Previously they ignored that problem, the

disabilities. According to the traditional mindset disability was seen as a curse. That was

about 30 years ago. Not anymore, now reduced. But even one or two percent still believe that

and they bring their child from temple to temple.”

Findings – Third research question

61

Conclusion

The attitudes of teachers towards children with an intellectual disability, sometimes seem

contradictory. On the one hand they are very aware of the medical causes. You also notice that they

have already become acquainted with Western models and handling techniques, such as ADL,

empowerment, positive reinforcement, equality model ... by the numerous contacts and volunteers

from abroad. On the other hand, the traditional thinking patterns are also embedded in their attitudes.

This sometimes creates an area of tension. It can happen that respondents contradict themselves by

taking both points of view. Mostly, they are unaware of this.

They themselves are very proud of their job. The staff members get their motivation from the children

from Anbu Illam, and the love and smiles they share. The staff also realize the importance of their role

for the future prospects of the children. They all seek to obtain as much improvement in the children,

so the children get as close to normal as possible. Allowing them, as much as possible, to function

within the Indian society.

If the staff refers to the future of children with intellectual disability, one can notice that there is a

striking distinction between children with a mild intellectual disability, and children with severe and

moderate intellectual disability. Most opportunities are reserved for people with physical disabilities.

After that people with mild intellectual disability also receive more and more opportunities, though

this is not yet the case for all walks of life. Moreover, it is very dependent on the family circumstances

and the extent to which the family strives for the inclusion and participation of their child.

People with a severe or profound intellectual disability, however, get handed little or no opportunities

in the Indian society. The participants indicate that they do not see quick changes in the near future.

Finally, the participants indicate that there is still a long way to go, regarding the attitudes and

perceptions of Indian society towards people with intellectual disabilities. In many ways, people with

intellectual disabilities are still excluded from the daily life. According to the staff, this is largely due

to the lack of awareness among the population and at the same time because of the prevailing stigmas

that live in society. Many adequate laws exist in India, but, unfortunately, they are not implemented

in practice.

Discussion and conclusion

62

C H A P T E R V

D I S C U S S I O N A N D CO N C L U S I O N

Discussion and interpretation of the results

After analyzing the results of the previous chapter, I obtained four overarching themes that highlight

important aspects of attitudes and perceptions in India. In the analysis I have placed all the subthemes

that emerged in the findings, in a summary schedule. Some aspect were connected to each other,

while other aspects were placed opposite to each other. Associations were sought and found.

The four overarching themes mentioned are: ‘(un)awareness’, ‘(breaking) the seclusion’, ‘(ex)change’

and ‘responsibility and persistence’. As already stated, there was a link found between these themes.

The following figure (Figure 9) shows that connection. There is a cycle in which the four aspects

succeed each other. This will be discussed later.

Figure 9: Overview of the overarching themes of this study.

It was also found that these four aspects, and how they relate to each other, can be traced on a micro,

meso and macro level. This is schematically illustrated in Figure 10, below.

Discussion and conclusion

63

Figure 10: Levels on which the overarching themes apply.

In the following, the four overarching themes are presented separately. They are analyzed and linked

to literature from (mainly Western) scientific research.

(Un)Awareness

As the title reveals, this topic concerns two categories, namely awareness and unawareness.

Awareness

Awareness means being aware and having the knowledge or understanding about something, in this

case about disability. The results show that the public awareness in India is not sufficient. The

respondents gave examples of themselves having hardly any knowledge about disability before they

started working at SCAD.

Yet the staff notices progression. The parents seem to be more aware, because now they send their

child to a special school while the child was locked up before. Thanks to CBR camps and other

initiatives also the Indian population became a little more aware, because now they are confronted

with people with disabilities while they never faced them before. That the awareness of disability has

improved, can be a result of more media coverage, yet this remains very limited. This leaves the

general population, including families of children with disabilities and school principals, still largely

unaware of new laws and policies (Kalyanpur & Gowramma, 2008).

Discussion and conclusion

64

Some respondents indicate that a teacher must have attention to the limitations of the child. They refer

to the awareness of the differences between children with and without disabilities. This principle is

typical for the segregation paradigm in which attention is drawn to the differences rather than the

similarities (Wuyts, 2006). However, some staff emphasize that the child should be treated equally.

This opinion can be seen within the latest paradigms such as the quality of life model. This model

highlights that one has to start with the strengths of the client. It is the intention that the space is

created in order for the children with a disability to develop themselves. This is possible by

supporting this person, only when necessary (Broekaert, Hove, Vandevelde, Soyez &

Vanderplasschen, 2000).

These divergent visions confirm the great diversity of attitudes towards people with a disability and

consequently differences in behavior and dealing with the children.

The readiness to accept disability is influenced by a range of socio-cultural factors, “particularly those

of gender and age; type of disability and the associated social implications and stigma of that

disability” (Singal, 2010). Kuruvilla and Joseph (1999) noted this in a research based in rural South

India. The correspondents of this study also enumerates these factors. How the staff sees what factors

affect awareness and how awareness affects other factors, is displayed and schematized in figure 11.

This figure shows all the elements that emerged from the analysis of the results, based on the different

sub-themes of chapter 4.

Figure 11: Overview and relationships of the topics related to awareness.

Discussion and conclusion

65

There is a mutual influence between awareness and factors such as the population, family of the child

with a disability and the government. But also between factors like exchanging, policies and rights,

the future of a person with a disability, job possibilities, education and more independence. This is

shown by a thick arrow.

In addition, there also exists a direct and linear influence. More positive attitudes of the population

will make people with disabilities dare to come out more. If they are more outdoors, there will be

more exchanges. When the government draws up policies and rights and makes sure they are put into

practice, this will directly affect the future of a person with a disability. Finally, education and job

opportunities ensure the person to be more independent. This is indicated by a thin arrow.

To improve awareness and understanding, education, along with technical assistance on enforcement

of the procedures is essential. Educational programmes should be targeted to all those involved in the

lives of persons with a disability, including people with disabilities themselves, and off course

professionals and government regulators (WHO, 2011)

Unawareness

Besides slight awareness, there is a lot of unawareness in India. A lack of knowledge and thus more

unawareness, is likely to increase the risk of prejudice and stigma towards people with disabilities.

Stigma can leave people marginalized and excluded from their own community (McKeever, 2006).

Stigmatization has an abundance of consequences, both internal and external. It impacts on peoples’

psychological well-being, social welfare and their quality of life. It causes anxiety, stress and further

stigma. It generates reduced acceptance, discrimination, rejection and social exclusion (NDA, 2007). It

can result in a lowering of self-esteem and self-efficacy (Nolan et al, 2006). This may cause people to

internalize these stigmatizing ideas (Graham et al, 2003).

There is also unawareness of with the staff of Anbu Illam, as they say themselves. The teachers refer to

their limited specific training and the lack of specific knowledge. This is in line with the views of

Ganasen, Parker, Hugo, and Stein (2008) that point at the lack of knowledge about disabilities in

developing countries. However, compared to other schools in India, the teachers have already good

insight into disability. Among other things, this is also due to the many contacts with international

volunteers, who each provide specific education and explanation. SCAD balances between awareness

and unawareness. They are aware of their unawareness and try to compensate for this by asking for

contributions of the international volunteers and attending secondary training in India.

Where laws exist, there is limited degree of compliance with the laws, especially in developing

countries (WHO, 2011). This is because the Indian population are unaware and thus cannot comply

with the laws.

Discussion and conclusion

66

(Breaking) The Seclusion

This theme can be divided into two parts. In particular, ‘The seclusion' and' Breaking the seclusion’.

The seclusion

With seclusion is meant the state of being alone and away from other people. This is the reality in

India for children with intellectual disabilities. During the interviews there was often spoken about

children locked in the houses. They are secluded.

Because the children are isolated, they are never the subject of discussions. And they can never

participate in discussions with villagers. They are silenced. A link can be found with ‘the culture of

silence’, a concept devised by Paolo Freire. This is also known as the pedagogy of the oppressed. The

culture of silence arises when the language of the oppressed systematically gets supplanted by the

language of the oppressors (Freire, 1970). In this case, the oppressed are the children and people with

an intellectual disability. The oppressors are those people who make decisions, who change the

practice. Like policy advisers and politicians, but also villagers, teachers or parents,… This will

exclude the oppressed to participate in conflicts of interest and decision making in the social field

(Lange, 1972). Thus nothing will change the position of the oppressed.

The seclusion is maintained through something known as ‘the concept of otherness’. This is a social

construction of disability, that portrays people with disabilities as ‘other’, as different and not as an

integral part of the ‘normal’ world. This worldview generates the negative attitudes and behaviors

(NDA, 2007). The tendency to describe people with disabilities as different and abnormal, became

clear in the findings of this research. Both the staff as the society in India use these words to define

people with disabilities.

What also reinforces seclusion is the division of ‘us’ vs. ‘them’ and ‘we’ vs. ‘others’. This divide is

shaped by unhelpful perceptions and stereotypes related to disability, created by past experiences.

Perceptions about persons with disabilities (the assumed ‘other’) can change when the ‘other’ is a

friend, or a sibling, or a colleague, relative, teacher, leader (Vernon & Swain, 2002). However, there are

not many opportunities for interactions with persons with disabilities in Indian society. They do not

seem to have opportunities for interactions and relationships beyond their families, immediate

neighbors and professionals. Therefrom, the divide of ‘us’ and ‘them’ continues (Vernon & Swain,

2002).

One example is the theme of relationships. According to the staff people with physical disabilities can

marry if they find a family who want an arranged marriage. Often they marry someone who has a

physical disability too. For people with mild intellectual disabilities, the opportunities of marriage are

shrinking dramatically. The staff knows a few cases where someone is married to a person with a mild

intellectual disability. Often these girls are married off. The staff is concerned that it is often not an

easy and good marriage. Therefore marriage is usually not desirable. People with severe and

profound disability cannot marry in India, every respondent agreed on this. Chen (2002) holds that

negative attitudes towards marriage and other interpersonal issues, designate that people with

disabilities are still not fully integrated within society (NDA, 2007).

Discussion and conclusion

67

Influencing factors on seclusion

Factors that maintain seclusion

Figure 12: Factors which affect and are affected by seclusion.

The figure above shows the factors which affect and are affected by seclusion. Aspects as gender,

poverty, stigma and burden have a negative influence on seclusion and they reinforce it. There are

also factors that maintain the seclusion, namely exclusion, isolation, no contact, unconsciousness and

lack of prospects for the future of a person with a disability. These are the factors that occurred in this

study. It does not imply that this concept is generalizable throughout the South (India). It is applicable

to the specific context of Anbu Illam.

Breaking the seclusion

It constitutes a cycle as we bring together the perceptions about persons with disabilities and their

invisibility. Lack of awareness, ignorance and negative attitudes reinforce marginalization (Alur,

2003). Invisibility within the society and community must be broken. We have to break the seclusion.

Every human being has “a sense of belonging,” writes Dr. Kenneth Pelletier. Maslov designated

belonging as a basic human need, just as important as food and shelter. A sense of belonging is

achieved when a person feels that he is accepted. He must feel that they can contribute something to

society. The majority of the population wants to belong to different groups and places. Family,

friends, neighbors, colleagues at work and groups with common interests are important (Jane

Sherwin, 2008). This is no different for people with disabilities.

Being connected refers to the quality and number of connections with people and place (Antonsich,

2010, p. 645). This is very minimal for people with disabilities in India. This is confirmed when the

staff lists that most children have contact only with their mother at home and with teachers and

Seclusion

Discussion and conclusion

68

classmates (with disabilities) at school. Often peers (without disabilities) do not want to play with

them, and neighbors are afraid to communicate with them.

(Ex)Changing

For a change, also this part is divided into two sections. The subjects exchange and change are

explained in detail.

Exchanging

Conversing and communicating with others, exchanging ideas with one another, that is what makes

us social human beings. In order to break through the concept of ‘otherness’, contact with the 'other'

group turns out to be very important. In other words, it is important to share information and to talk

to each other. Exchanging feelings and thoughts also has its influence on creating more awareness. For

this, I refer back to the schedule around awareness (Figure 11). If people with disabilities come

outdoors more, they will be able to interact and exchange more. There is also a mutual influence

between awareness and exchanging. Meaning that, if one exchanges more with someone with an

intellectual disability, it will raise awareness. When awareness increases, one will dare to exchange

easier.

The contact hypothesis is applicable here. Research shows that to change attitudes and reduce

prejudgment, one of the influential mechanisms is direct contact between people with and without

disabilities. Friendship is the most ideal circumstance to achieve changes. Generating affective ties is

the most effective (Hewstone, 2003 citing Hewstone, 1996; Pettigrew, 1998; Pettigrew et al, 2000). In

changing attitudes interpersonal relations are key. At the same time, it also indicates the level of

integration and inclusion. Consequently, a lack of personal contact reinforces fear and stereotyping,

which leads to discrimination and exclusion (NDA, 2007).

Changing

There are already some noticeable changes in India. This also applies to the staff of Anbu Illam. The

attitudes of the staff members can be situated in different paradigms departing from a segregation

tendency, by which the respondents emphasize the disability as a deviation from the norm. Several

staff give an impetus to different newer paradigms, in which they point out the importance of

emancipation. Research by Petty et al (1998) revealed that attitudes tend to be stronger when they are

changed as a result of extensive mental effort. People have more predictive behavior when changes

ask only little thought. Attitudes can fall along a continuum ranging from non-attitudes (Converse,

1970) to strong attitudes (Fazio, 1986), according to Petty et al.

In this paragraph too, can be referred to Paulo Freire (1970), who says that the 'culture of silence' can

be broken by giving a voice to the oppressed, to person with a disability. It is important that the

oppressed continue to have a perspective on change, so that their situation does not appear hopeless.

If not, they will become apathetic, thus losing the motivation for change and liberation.

Discussion and conclusion

69

Achieving change is not evident. It takes a lot of energy and perseverance. Many accepted ways of

thinking can be remarkably resistant to change.

“We often see the impact of negative attitudes in how one person treats another. But negative

attitudes are also the foundation stone on which disabling policies and services are built.

Harmful attitudes that limit and restrict are institutionalized in policies and services and so

maintain the historic disadvantage that disabled people have faced” (Massie, 2006).

Figure 13: Representation of the interaction between change and Excange.

To obtain more changes, there needs to be exchanged more. Only when there is more exchanging

going on, one can achieve change. The exchange is what makes things change, including people's

perceptions. This conforms the contact hypothesis.

Responsibility and Persistence

To achieve change and thus break the seclusion and raise awareness, responsibility and persistence

are key. This responsibility is situated on three levels. At the level of the person with a disability, at

the level of education and at the level of the government. In other words, at a micro, meso and macro

level (see figure 10).

At the micro level it is important that people (with disabilities) must change their beliefs about

themselves first before they can change their attitudes towards others (McConkey et al,1983). The new

model for supporting disabled people focuses on their responsibility of shaping their lives themselves

and getting more choices and control to achieve goals in their everyday lives. In line with this model,

the citizenship model assumes that every person has certain rights and obligations within society. This

model focuses on the full participation and contribution to society (The Fever Hellinckx & Grietens,

2001).

At the moment there is no adequate consideration of the individual (with a disability) in India. People

with disabilities have the responsibility to demand their rights. They must receive sufficient

opportunities to claim this. At the moment that is not yet the case.

Discussion and conclusion

70

If we look at the meso level, teachers, staff members and education in general, carry out many

responsibilities too. UNESCO (1996) noted that “education should serve a bigger purpose for children

and young people”. Not only should education improve knowledge and skills, it is also a means

improving personal development and building relationships among individuals, groups and nations

(Singal, 2007). The role of education is preparing young people with disabilities to lead a good quality

of life, however defined (NDA, 2007).

Some respondents of this study highlight that currently there is a lack of sufficient responsibility

among teachers and staff. Their commitment should go beyond merely attend school. More can be

achieved with the children, if the staff would take up their responsibilities.

Parents also play a role at the meso level. Parents should be involved in all aspects of learning (WHO,

2011). The family is the first source of education for a child, and most learning occurs at home. Once

again, the staff is conscious of this fact. Parents need to be brought on board and should participate

more. Anbu Illam is attentive to the role of the parents. The responsibility for involvement in the

learning process of the child, is placed with the parents. The teachers take little initiative to further

involve the parents.

In the West we are moving towards an education systems that steps away from the more traditional

pedagogies and adopt more learner-centered approaches. This approach distinguishes that each

individual has an ability to learn and a specific way of learning (WHO, 2011). India stands further

away from this reality and it will take quite some time to reach this point. It is also no guarantee that

this framework fits within the Indian society.

Finally, we discuss the macro level. Government plays a significant role at this level, which should not

be underestimated. This level has the most impact on changing the future of people with disabilities in

India. This is a huge responsibility.

The Indian government still has a long way to go in helping to change these attitudes (Kalyanpur,

2008). From the experiences recounted by the staff, it is conspicuous that there is a gap between

creating an institutional and policy framework and enforcing it (WHO, 2011). This requires

coordinated political action, both national and local.

It is striking that In India children with disabilities in special schools fall under the responsibility of

the Ministry of Social Justice and Empowerment. While children in mainstream schools are covered by

the Department of Education in the Ministry of Human Resource Development (Naidu, 2008). This

separation mirrors the cultural perception that children with disabilities are in need of welfare rather

than equal opportunity (World Bank, 2009). This results in further segregation of children with

disabilities. It moves the emphasis from education and achieving social and economic inclusion to

treatment and social isolation (WHO, 2011).

Hence, everyone has to make an effort to bring change (Sukjramani & Verma, 2013). Persistence is

essential to achieve and to succeed, because the road will not be easy. Many obstacles must be

overcome. Both by the individual, by teachers and staff as well as by the government.

Discussion and conclusion

71

Recommendations

Recommendations for practice

SCAD focuses on children with disabilities and families in poverty. This makes them truly responsive

to the needs that are present in South India. The facilities SCAD offers are more than what is being

offered on average basis in India. Nevertheless, some recommendations can be made to improve the

practice.

Firstly, it is advisable and desirable to hire more staff, specialized in intellectual disabilities. If that is

not possible, for reasons like lack of response, it is important to provide sufficient support and internal

training for the staff who enter employment.

In addition, it is recommended to focus on the formation of the staff. The first skill is aimed on gaining

insights into the nature of the issue of disability. Therefore it is important to have objective knowledge

on disabilities and syndromes, starting from new paradigms (Buntinx & van Gennep, 2007). In this

way stigma can be stopped and incorrect or inadequate knowledge is eliminated (de Goei, Plooy &

Weeghel, 2006). Futher it is essential to (learn to) portray the support needs of each child. Allowing to

come up with certain strategies and procedures, to meet the needs of the children. This contributes to

the execution of the support plan and a good coordination of this support.

SCAD should endeavor to attain more consistency within the team. Although this is difficult, given

the Indian culture and its habits and customs. The functions and positions change all too often. People

change jobs during the school year, often very suddenly. The children should be prepared for this, but

that is not the case. For these children stability is a necessity.

It is a very big advantage that SCAD has such good relations with foreign organizations. Yet they

must be careful for the difficulty and the risk that exists, to simply implement Western frameworks

and Western orthopedagogical methodologies. It is possibly that these are not adapted to Indian

culture and therefore are not culture friendly.

Recommendations for policy

There is already a good framework of laws and policies in India. This is a good starting point.

However, the government must guarantee and make every effort to also implement these policies into

practice. Authority must also fight against corruption within its own ranks, by providing more

inspection and control.

To gain more insight into the current situation of existing disabilities in India more thorough static

queries should be done. Important here is to have clearly defined definitions of every disability, in

order to avoid that there are so many differences in the results.

Discussion and conclusion

72

The government should provide more resources to NGOs and other facilities and organizations,

giving the opportunity to hire more specialized personnel.

More interventions should be made to improve awareness. The government needs to invest heavily

into good campaigns and programs, that also reach the most remote villages. In order to start the

discussion about disability, to provide more information and thus to achieve more awareness.

Finally, there must be greater focus on severe and profound intellectual disabilities. Both in drafting

laws that also apply to them, as by offering customized help. This can exist in the form of specific day

centers, well developed facilities etc.

Recommendations for future research

Study shows the need for specific research and literature about children with intellectual disabilities in

(South) India. Because of the link between the image that represents a person and treatment in

practice, is designated a critical evaluation (Wuyts, 2010). A critical evaluation and assessment is

indicated about children with intellectual disability, because of the link that exists between forming a

representation of a person and the treatment and dealing with them in practice (Wuyts, 2010).

Future research can take on the task both to gain insights into the implications of the image about

children with intellectual disabilities. This for the children themselves and for their environment. On

the other hand, a thorough research is recommended so recommendations can be made in how to

form an accurate picture, and exactly how this process works.

In India, there is little research available which examines the position of the children with an

intellectual disability themselves, and that gives them a voice. More attention should be given to

participation, empowerment and involvement of people with disabilities themselves. This needs to

change, in order to gain more understanding and obtain more inclusion. In addition, more research

can be done on the coping mechanisms of families living in poverty who have a child with a disability.

Strengths and limitations of the research

It is likely that the Western view of the researcher has affected the framework of this thesis. In this

study I consider myself as a part of the research, causing that subjectivity cannot be excluded. It is

very plausible that the cultural differences between the Indian context and the Belgian perspectives

have had an influence on the research. I always reviewed the data from the perspective of the

participants with respect for their experience.

A major strength is the duration of my stay in India. I chose to stay in India for a long time, especially

compared to the average master's thesis. For this thesis, I set sail from my practical experiences and

observations. I have explored the Insider-Outsider positions. As an insider, by working and helping

Discussion and conclusion

73

during the first few months. Thanks to my previous education as a teacher I could easily connect and

find easy affiliation with the staff. As an outsider, because as a researcher I strived to display the

images and perspectives of the staff in an objective manner.

As a limitation, one can mention the small number of respondents. But I tried to convert this limitation

to an opportunity, because I now had the chance to dig deeper an achieve a deeper level of

understanding. Herewith one should also take into account the specific context and the possibilities

and limitations that this entails.

Much attention was devoted to the language, as in South India, the official language is Tamil. I chose

to work with interpreters. On the one hand, this allowed the participants to respond extensively,

without limitations due to poor knowledge of English. On the other hand it created a feeling of a safe

and confidential atmosphere. Though it was not easy to find a suitable translator, who had equal

status and social hierarchy as the participants, and moreover was not connected with the management

of SCAD in any way. Equality is a prerequisite to make sure the participant would talk freely and

thoroughly and above all to preventable social desirable answers.

This social desirability can never be completely avoided. The researcher has a white skin which can be

associated with the hierarchy within the organization. Additionally the interviews were conducted in

the working environment of the respondents, which may also give rise to social desirability. Although

this was offset as much as possible through a quest for neutral classrooms on the same campus.

Finally, I have not evaded concepts such as religion, karma and sins. Even though these concepts are

very difficult to understand for me, as a Western person. I have endeavored to respect these concepts

and to include them in the research, which is a strength of this study.

Discussion and conclusion

74

General conclusions

There is still a lot of unawareness in South-India towards intellectual disabilities. This is exemplified

by the stories of the participants about their own experiences before working with children with

intellectual disabilities, about families they know who lock up their child, about the negative reactions

and behaviors from villagers when taking the public transport with a child with an intellectual

disability. To defeat these negative attitudes, profound and intense contact is necessary whereby

people are confronted with their own thoughts. Only thus change can occur and awareness can be

enhanced. Besides contact and confrontation, the acquisition of correct knowledge is an important

aspect.

When families are unaware about the negative effects of isolation on the well-being and confidence of

their child with an intellectual disability, seclusion maintains the reality. Breaking this seclusion is not

evident. This can only be done by creating more awareness. Not only the families play a role in

seclusion. Often it is a response to negative reactions of neighbours, villagers or other people. These

reactions are based upon stigma and prejudice. Again, only more awareness can provide a solid

answer. A voice must be given to people with disabilities, to break the silence, to break the seclusion.

Being aware of the factors that influence seclusion, and what factors are maintained by seclusion can

be a good starting point for change.

Exchanging information, exchanging stories, exchanging opinions, exchanging experiences,

exchanging ideas, exchanging emotions,… it is all part of the contact hypothesis. Things can be

changed through contact. Attitudes can be changed, but also behaviours, opinions, thoughts,

feelings,… and in the end lives can be changed. The lives of people with intellectual disabilities within

the Indian society.

For all this to be made into reality, perseverance and responsibility are essential. People have to take

up their responsibilities. People with a(n) (intellectual) disability should take charge over their own

lives. They have to become responsible and demand for the policies to be put into practice, demand

that their rights are respected. Teachers and education also have a role to play and are attributed

much responsibility. They are the catalyst between the children with and intellectual disability and

their futures. Obviously we cannot forget the role of the government. They have drafted good policies,

which are grounded in the ‘rights based model’. However, there appears to be a large discrepancy

between the policies on paper and the practice. On one hand not enough people are informed about

new regulations. On the other hand it lacks a supervisory body which ensures the implementation.

Furthermore, corruption within the different levels of the government has as outcome that money is

not distributed fairly. There should be an increasing emphasis on people with intellectual disabilities,

especially severe and profound disabilities. The current policies offer little response to their needs.

Figure 9 shows how the subjects above are related to each other. They form a cycle, which is explained

in the preceding. This cycle is applicable to micro, meso and macro levels. To illustrate the meso level,

here is one example: a teacher must be aware of the various existing disabilities, but also of proper

techniques and frameworks, to respond to the specific needs of children with an intellectual disability.

They must be aware. If they are aware, they can break through seclusion. If the teachers are unaware,

then seclusion is preserved. The seclusion can only be broken by exchanging a lot. Thanks to

Discussion and conclusion

75

exchanges, changes will occur. But teachers must also take their responsibilities towards their

students. They have to keep on learning which requires perseverance. And thus again, achieving more

awareness.

The attitudes and beliefs of the staff members of Anbu Illam towards children with an intellectual

disability are very diverse. Most of them are aware of the different disabilities and their needs.

However, they are still unaware about the benefits of interaction between children with disabilities

and the wider environment. As a result they take little initiative to come outdoors with the children,

and to break seclusion. However, they realize that children who are locked up at home is not a good

course of action. The teachers exchange a lot with children with disabilities. As a result, the children

make progress and change. To maintain this change the teachers realize that they must take (more)

responsibility and that they must persevere. Frequent repetition is necessary for these children to

learn. As some teachers take their responsibilities and show that they want to learn, they will be more

aware and able to provide better support to the students with an intellectual disability of Anbu Illam.

For a good future of people with disabilities the cycle needs to be completed many times more. The

staff members indicate that to improve the future of people with intellectual disabilities, a lot more

awareness is needed for the seclusions to stop. They hope that in the future there will be a lot more

exchanges between people with disabilities and their broad environment so that they are no longer

excluded. Different actors have to take their responsibilities to change the future of people with

(intellectual) disabilities in India.

The attitudes and perspectives of Indian society towards people with an intellectual disability is quite

negative. Most of the villagers of remote villages, never had any contact with someone with an

intellectual disability. They will not take any responsibility in changing this situation, because they

have never exchanged anything with someone with a disability. In poor villages, the people with

disabilities are mostly locked in the houses. This means that there is no possible contact. Most villagers

are even unaware that some families have a relative with a disability. This is kept secret, to avoid

stigma and exclusion.

Persistence is essential to achieve changes for people with intellectual disabilities in India. The road

will not be easy. Many obstacles must be overcome. Both by the individual (and his/her family and

environment), by teachers and staff as well as by the government and Indian society.

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no. 12/13: 22-4.

Jeffery, R. & Singal, N. (2008). Disability estimates: implications from a changing landscape of

socio-political struggle. RECOUP 2005-10.

Kalyanpur, M., & Harry, B. (1999). Culture in special education. Baltimore: Paul H. Brookes.

Kuruvilla, S., and Joseph, A. (1999). Identifying disability: Comparing house to house survey and rapid

rural appraisal. Health Policy and Planning 14, no. 2: 182-90.

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Murdick, N., Shore, P. & Chittooran, M.M. (2004). Cross-cultural Comparison of the concept of

“Otherness” and its Impact on Persons with Disabilities. Education and Training in Developmental

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Pathak, R.K., (2008). Bio-Social Issues in Health. New Dehli: Nothern Book Centre.

Singal, N. (2007). Conceptualising Disability and Education in the South: Challenges for

Research. Recoup. Working paper 10. University of Cambridge.

Singal, N. (2009). Education of children with disabilities in India. Paper commissioned for the

EFA Global Monitoring Report 2010, Reaching the marginalized. UK.

Singal, N. (2011). Disability, poverty and education: implications for policies and practices.

International Journal of Inclusive Education, 15:10, 1047-1052.

Singh, J.P. (2010). Changing Attitude a paradigm shift in perception: Focus on Disability Studies.

Dehli Psychiatry Journal (13:1). Dehli.

Smart, J (2001). Disability, society, and the individual. Gaithersburg, MD: Aspen.

Sukhramani, N. & Verma, S. (2013). Disability as Diversity: The Indian Perception. In Ronald Lutz

(Ed.) Diversity and Respect – Problems of Perception in the Global Agenda for Social Work (pp.

109-122). Oldenburg: Paulo Freire Verlag.

UNICEF (1999). An Overview of your people living with disabilities. Their needs and their rights.

Inter-Division Working Group on Young People Programme Division, New York: UNICEF.

World Health Organization (2011). World report on disability 2011.

Narajan, J., (2004). Commentary – Persons with disabilities in India: a Special Educator’s

Personal Perspective. Society for Disability Studies (24:2). The Ohio State

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Eagly, A. H., & Chaiken, S. (1993). The psychology of attitudes. Harcourt Brace Jovanovich

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National Cancer Institute. Theory at a glance: a guide for health promotion practice, 2nd ed.

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ORGANIZATIONAL BEHAVIOR AND HUMAN DECISION PROCESSES 50, 179-211 (1991) The

Theory of Planned Behavior ICEK AJZEN University of Massachusetts at Amherst

References

80

References

81

82

Appendix 1: The participants

Gender Age range Highest level of

education

Function in Anbu Illam Religion Marital

Status

Male 18-29 Post graduate level Sports teacher Roman

Catholic

Married

Female 18-29 College Graduate Nurse and teacher Roman

Catholic

Married

Female 18-29 College Graduate Teacher Hindu Married

Male 30-49 Post graduate level Coordinator Roman

Catholic

Married

Female 30-49 Trade/Technical/

Vocational Training

Teacher Hindu Married

Female 18-29 College Graduate Vocational trainer Roman

Catholic

Single,

never

married

Male 18-29 College Graduate Teacher Hindu Married

Male 18-29 College Graduate Dance teacher Hindu Single,

never

married

Female 18-29 College Graduate Special teacher Hindu Single,

never

married

Male 18-29 College Graduate Physiotherapist Hindu Single,

never

married

Female 18-29 College Graduate Physiotherapist Hindu Single,

never

married

83

Appendix 2: Informative letter

Dear staff member,

Within the framework of my Master's Degree in Orthopedagogical Science, I am carrying out a

qualitative research project in Anbu Illam. I am interested in discovering how teachers of Anbu Illam

experience their daily practice.

The methods I will be using will be to conduct individual interviews with every member of the team

of Anbu Illam and in addition I will ask you to fill in a short written questionnaire. In the next phase

of the research I will conduct group interviews, in which I hope every member of the team will be able

to participate. In these group interviews I will focus on the main themes that emerge from the

individual interviews.

Your experiences will be of great value to me in getting an insight into the perspective of a teacher in

the field of intellectual disability in South-India.

Thanks for your cooperation.

Kind regards,

Els Rogier

84

85

86

Appendix 3: Informed Consent

Consent for Participation in Research

I volunteer to participate in a research project conducted by Els Rogier, a Master Student from

Ghent University . I understand that the project is designed to gather information about the attitudes,

beliefs and perspectives about disabiliy, from the staffmembers of Anbu Illam. I will be one of

approximately 10 participants for this research.

1. My participation in this project is voluntary. I understand that I will not be paid for my

participation. I may withdraw and discontinue participation at any time without penalty.

2. I understand that most interviewees in will find the discussion interesting and thought-

provoking. If, however, I feel uncomfortable in any way during the interview session, I have the right

to decline to answer any question or to end the interview.

3. Participation involves being a participant of a focusgroup supervised by Els Rogier and an

interpreter. The 3 group discussion will last approximately 2 hours each. Notes will be written during

the interview. An audio tape of the interview and subsequent dialogue will be make. If I don't want to

be taped, I will not be able to participate in the study.

4. I understand that the researcher will not identify me by name in any reports using

information obtained from this interview, and that my confidentiality as a participant in this study

will remain secure. Subsequent uses of records and data will be subject to standard data use policies

which protect the anonymity of individuals and institutions.

87

5. The board members of SCAD will neither be present at the interview nor have access to

raw notes or transcripts. This precaution will prevent my individual comments from having any

negative repercussions. The interpreter is the translator is bound to a contract that guarantees duty of

confidentiality.

6. I have read and understand the explanation provided to me. I have had all my questions

answered to my satisfaction, and I voluntarily agree to participate in this study.

7. I have been given a copy of this consent form.

____________________________ _______________________________

My Signature Date

____________________________ ________________________________

My Name Signature of the Investigator

Els Rogier 0091 99429 78628 els.rogier@ugent.be

88

89

90

91

Appendix 4: Agreement with interpreter

Agreement with the interpreter

I, __________________________________________ (name) confirm that I will take the role of interpreter

during the research of Els Rogier. I am responsible for translating the necessary documents and the

translation of the questions during the individual interviews. I will be present during the interviews, I

will translate the questions and I will, if necessary, ask the participant additional questions to get a

better understanding of the situation discribed.

Through this agreement, I affirm to adhere to the ethical standards related to qualitative research,

outlined below.

1. My participation in this project is voluntary. I understand that I will not be paid for my

participation. I may withdraw and discontinue participation at any time without penalty.

2. The information obtained during the interviews will not be discussed in any way with people

who are not involved in the research.

3. I will respect the opinions of the participants. I will not show nor pronounce any judgements.

4. I have read and understand the explanation provided to me. I have had all my questions

answered to my satisfaction, and I voluntarily agree to help in this study.

5. I have been given a copy of this agreement.

92

____________________________ ________________________________

My Signature Date + place

________________________________

Signature of the Investigator

Els Rogier

0091 99429 78628

els.rogier@ugent.be

Appendix 5: Interview questions

Interview questions

This interview consists of two parts. In total, the interview will take two hours. After one hour we do a short coffee-

break.

In the first part we will talk about your personal opinions and perspectives towards the daily practice. We will talk

about your education, work experience and personal experience.

In the second part we will talk about your opinions and perspectives towards disability in general. We will ask you to

93

describe the ideal situation of how people with an Intellectual Disability can be supported in their lives, and compare

this with the current situation in South-India.

If you feel uncomfortable with a question, you have the right to decline to answer.

The information that you provide during this interview is strictly confidential and will be processed in an anonymous

manner during the group discussion and further analysis.

If you have any questions during the interview, feel free to ask them.

Part 1: Opinions and perspectives towards the daily practice

1. Obtained knowledge

1.1 What was useful in your education for the daily practice you have now? What was missing?

1.2 Have you done or will you do an extra (technical) course to specialize in a certain topic? Which

opportunities do you have to do this?

2. Job description

2.1 How would you describe the role of a teacher/staff in Anbu Illam?

Next additional questions are asked if no response was obtained to these questions.

2.1.1 What are your tasks in Anbu Illam?

2.1.2 What are the other tasks you have within SCAD?

94

2.1.3 How do you feel about this combination? Is it manageable?

2.2.What do you like about your job? What do you find difficult in your job?

2.3 Do you sometimes reflect with others about your experience with children with an intellectual

disability? If yes, where do you talk about? If no, would you find this helping?

3.Personal experiences

3.1What was/is your motivation to work here?

3.2 Do you have anyone in your family with a disability?

If yes, how does this influence your work?

3.3 What are your talents in working with children with a disability?

3.3.1 What are your points to improve?

3.4 How do you experience/feel about children with a disability?

3.4.1 Which disability you find easy to work with?

3.4.2 Which disability your find difficult to work with?

4. Social network

4.1 What does your family think of your work with children with a disability?

4.2. What does your environment think of it?

4.3 How do you feel about this?

Part 2: Opinions and perspectives towards disability

95

5. General descriptions

5.1 What is your definition of disability?

5.2 What is/are the cause(s) of disability?

5.3. What is important for the well-being of a person with an ID?

6. Personal development

6.1 How important do you find education for children with an intellectual disability and why?

6.2 Which job opportunities do you think people with ID have? Do you think this will change in the

future and how?

7. Self-determination

7.1 In the ideal situation, how should children with ID be stimulated in a school environment to help

them to make their own choices and be independent. What are the differences and similarities with

the current situation?

8. Interpersonal relations

8.1 How do you think the personal network and personal contacts of people with ID looks like?

9. Social inclusion

96

9.1 In the ideal situation, which possibilities and chances should children with a disability have? How

should their future look like? What are the differences and similarities with the current situation?

10. Rights

10.1 Can you give an example of a way a person with an ID receives different rights and is treated

different than people without a disability?

10.2 Can you give an example of a way a person with an ID receives the same rights and is treated in

the same manner than people without a disability?

11. Emotional well-being

11.1 In the ideal situation, how should children with ID be stimulated in a school environment to help

them to express their emotions. What are the differences and similarities with the current situation?

12. Physical well-being

12.1 In the ideal situation, how can children with ID be stimulated in a school environment to help

them to express their physical problems? What are the differences and similarities with the current

situation?

13. Material well-being

13.1 In the ideal situation, which materials, furniture, resources,... should be present in the school

97

environment, to improve the well-being of children with ID? What are the differences and similarities

with the current situation?

Conclusion

14. What would you like to see happen in the future, for people with an ID?

15.1Have there been any surprising questions during this interview? If yes, which and why was it

surprising?

15.2 Are there more things or topics you would like to share which were not addressed in the

interview?

15.3 Do you have questions or remarks about this interview?

Thank you for your cooperation!

98

Appendix 6: Focus group questions

First Focus group – Pilot

General perspectives towards ID and Rights of persons with a disability

Introduction – information about the structure and planning – 10 min

– Welcome

– After the individual interviews, we will also do 3 group discussions during the next week.

Each group discussion will take 2 hours.

– I have to ask you again to sign an informed consent and also to fill in some demographic

questions.

– We will focus on Intellectual Disabilities or how you say it: Intellectual Challenged people.

Maybe you wonder why I only want to talk about Intellectual Disabilities. I observed and

learned during my stay in India that a lot of attention goes to physical challenged people, but

Intellectual challenged people are still a little ignored. That is why I want to shine my light on

it.

– My gaol is to get more information about your vision and perspectives and to broaden my

insights in the Indian culture. Maybe the answers on the topics we will talk about are very

easy and logical for you. I want to try to understand how the Indian situation is.

– I want to ask you to share all your thoughts, opinions and personal experiences.

– My role as discussion leader is to ask questions and stimulate discussions, but the main goal is

that you will discuss and talk among yourselves as much as possible. The discussion leader is

99

only there to keep up the pace and occasionally ask further questions. There are no right or

wrong answers. It's about what your opinions and why you think it. You do not have to come

to a consensus, everyone has the right to have his own opinion.

– There will be an (anonymously) report made by these meetings and we will also audio tape

the conversations. Just like the individual interviews, anonymity is assured.

– Each participant signes the informed consent.

– Are there any questions before we begin?

Introduction question – to loosen up, everyone has to answer. Everyone gets 1 minute. 10 min

– What is your best or funniest experience you've had here in Anbu Illam?

What types of ID are there? – 20 min

– Write down all the types you know on a piece of paper. Every type on a different piece.

– Discuss with each other which disability you think as a teacher is the least severe, and put

them in order to the most severe disability.

* (Take into account the chances they get, social acceptance and integration.)

* How does the Indian society looks towards these disabilities, would they come up

with the same order?

* Why this order? What does it depend on? Which values?

* What other aspects influence the integration of people who are Intellectual Challenged

and why? (Gender, poverty,...)

Statements – 20 min

– I will read a statement.

100

– You also receive a paper with the sentence. Tick the box “true” or “false”. Do this individually.

– You have 2 little post-its in front of you. When I ask you, put the yellow one up if you agree,

the pink one if you disagree.

– Stimulate spontaneous discussion, otherwise ask at least 2 voices of each opinion. Why do you

think this?

Evaluation – 10 min

– Suppose you come home and someone asks you how this meeting was, how would you

summarize this meeting in one minute? (3 persons)

– What did you think of this meeting? (everyone answers)

Closure and acknowledgments

Thank you for being present!

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List of statements and related questions

1

Men with a severe Intellectual Disability get as many opportunities and are

treated in the same way as women with a severe Intellectual Disability.

True

□

False

□

– Why is there (no) difference between men and women?

– Would the situation be different with mild mentally challenged people?

2

The school has to provide sex education for Mentally Challenged children. True

□

False

□

– What would be the content of such a course?

– Why should the school (not) do this?

– Who's responsibility is it?

– How should the children deal with their sexual needs?

3

People with an Intellectual Disability should be required to be sterilized. True

□

False

□

– What solution(s) can provide such an action?

– What problems can provide such an action?

4

The government is taking adequate measures to support people with an

Intellectual Disability.

True

□

False

□

– What measures are there?

– Is there a big difference between the laws and rights on paper and the reality?

Can you gif examples?

– What could the government do more?

– Suppose you can give advice to the government, what would you say?

5

The media has a negative influence on the acceptance and integration of

Mentally Challenged persons.

True

□

False

□

– How can it influence the acceptance and integration?

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– What actions can be done by the media to improve the acceptance?

– Are there a lot of persons with a disability in movies and on television? Why

(not)?

6

Inclusive Education is not realistic for children with an Intellectual

Disability.

True

□

False

□

– How would you describe Inclusive Education?

– Do you think Inclusive Education is a positive evolution in the education

system? Why?

– Is Inclusive Education frequently applied these days?

– Why is it (not) realistic?

– Do you think it will become important in the future? Why?

– Which adaptations are needed so more mentally challenged children can

enjoy Inclusive Education?

Second Focus group

Quality of Life

Welcome – 5 min

– Today we will talk about Quality of Life

– We will compare ourselves with Mentally Challenged people and look for similarities and

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differences.

– You will be introduced to a model which is popular in Belgium. I want to get to know how

useful and culturally adapted it is for the Indian Culture. For that I need your opinions and

thoughts.

Opening question – 15 min

– What is your worst or most difficult experience you've had here in Anbu Illam?

– What do you understand by the concept 'Quality of Life'? What do you think this concept is

about?

Brainstorm QoL in your own lives – 15 min

– Each in turn says what makes them happy, what defines their Quality of Life. They write each

answer on a different post-it and collect this on a chart.

– If needed the answers are completed with answers from the individual interviews.

Brainstorm QoL for Mentally Challenged People – 10 min

– Each in turn says what they think that makes Mentally Challenged People happy, what

defines their Quality of Life. They write each answer on a different post-it and collect this on a

chart.

– If needed the answers are completed with answers from the individual interviews.

Introduction to the 8 components of QoL – 60 min

– The 8 components are written on a big chart. The post-its from the brainstorm are placed in

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the category they believe fits the best.

– All the categories are discussed one by one. More examples are added on different colored

post-its. The content of what belongs to this category is defined by the participants.

– Questions:

* What category is empty? Why? What category is irrelevant for the QoL in India?

* Assign numbers to the categories. 1 most important → 8 less important

* The same is done for the chart of Mentally Challenged People.

* Why are there more categories empty?

* What is not relevant for ID? Why?

Evaluation – 20 min

– What do you think of this QoL-model? Is it realistic, useful in India? Why? Which adaptations

are needed?

– What will you remember of this meeting? (everyone answers)

Closure and acknowledgments

Thank you for being present!

Third Focus group

Rights of persons with a disability and Evaluation

105

Welcome – 2 min

– This will be the last focus group.

Opening question – 10 min

– What is your biggest dream for Anbu Illam?

Rights of People with a disability. – 60 min

– Introduction “International Convention on the Rights of People with Disabilities”.

* Have you heard about it? What do you know about it?

– We will divide the group into two smaller groups. Both groups receive an envelope with 9

rights in it.

– You have to discuss in the small groups which right you think is the most important and put it

on the top. The one at the bottom is the least important.

– We will compare the to groups and discuss the differences.

Evaluation – 20 min

– Which statement stays with you the most and why? (everyone answers)

– What did you think overall of these meetings? (everyone answers)

– Are there more topics you think that would have been interesting to discuss and were

missing?

Closure and acknowledgments

106

Thank you for all your time and cooperation!

Handing out Chocotofs.

9 selected Rights of People with Disabilities

Article 19

107

Independent living and

inclusion in society

People with disabilities have the right to live in

society, with the same freedom, the same degree of

integration and participation as other people.

Services in society must be adapted to the needs of

people with disabilities.

Article 6

Women with disabilities

Women with disabilities are entitled to enjoy fully

and without any discrimination, all human rights

and all fundamental freedoms.

Article 7

Children with disabilities

Children with disabilities are entitled to enjoy fully

and without any discrimination, all human rights

and all fundamental freedoms.

Article 8

Awareness

The whole of society should be made aware of the

situation of people with disabilities. Respecting the

rights and dignity of persons with disabilities should

be promoted and all the stereotypes and prejudices

must be fought.

Article 20

Personal mobility

The countries have a duty to ensure the personal

mobility of persons with disabilities, so they can

enjoy the greatest possible autonomy.

Article 22

Respect for privacy

People with disabilities are entitled to respect for

their privacy, as well as respecting the confidentiality

of personal information and data about their health.

108

Article 23

Respect for home and family

People with disabilities have the right to marry and

to found a family. They have the right to decide

freely on the number of children they want. In no

case shall a child be separated from parents on the

grounds of his disability or disability of one or both

parents.

Article 24

Education

People with disabilities have the right to education.

Provision must be made so a child with a disability

can recieve education in the same conditions as other

children. (Eg access for children with disabilities to

schools, various forms of communication to learn the

content of the course, so as sign language and Braille

textbooks, ... )

Article 27

Labor and employment

People with disabilities have the right to work and

the ability to provide themselves with a job that they

have freely chosen. They should not be

discriminated during the interview due to their

disability.

109

110

Appendix 7: In-depth interview questions

First in-depth interview

Today we will talk more about Anbu Illam and general questions about Intellectual Disabilities in

India.

1) 9 years ago you started working in Anbu Illam, what dit you do before that?

2) How did Anbu Illam change in these last 9 years? (Visualisation: time line?)

3) How do you see the future of Anbu Illam?

4) What is going really good in Anbu Illam? What really has to change?

5) Often foreigner volunteers come to Anbu Illam. What do you think about this? Does it makes

your work easier or more difficult? Are the theories, tips and materials they provided adjusted

enough to the Indian context?

6) What is your opinion about following statements?

- It is not the responsibility of the school and teachers to learn Mentally Challenged children

daily tasks to become independent.

- Parents should be involved in the education of their mentally challenged child.

- People with an intellectual disability can integrate into society with minor modifications.

- People with an Intellectual Disability have to adapt to their environment.

111

- Mentally challenged children have no self image.

- Children with an Intellectual Disability have no need to express themselves creatively.

- There are hardly any prejudices about Intellectual Disabilities in society.

Are there more topics you want to talk about, which you think are relevant or important here in India?

Or difficult to talk about?

Second in-depth interview

Today we will talk about the life of an Intellectual Challenged person, special education, parents and

families.

1. What is your ambition/dream for the children, the families and for society towards

disability?

2. Have you seen any changes in India towards people with ID?

3. Have you seen any changes in the education in India, towards inclusive education?

112

4. What is your opinion about Inclusive Education? What is positive and negative?

5. What are the most necessary changes needed in society and education for the

wellbeing of children with disabilities?

6. I have noticed that there is a particular focus on physical disabilities in India. How do

you feel about this? What do you think of that?

Third in-depth interview

1. How does the life of a person with a mild mental challenge looks like? (Time line)

And a servere mentally challenged person?

What are the differences between rich and poor?

What impact has gender on this story? What do you think of this?

2. “A burden to the family”. Do you understand that parents say this? Why?

3. I have often heard that teacher aim to get the children 'normal'. What is normal? What

is abnormal? Why should they be made normal? How do you feel about this topic?

4. Why do you think marriage and sexuality are so difficult themes for Intellectual

Challenged people here in India? What is your opinion about this?

113

5. Do you think the parents are very involved in the life of their child with a disability?

What do you think of that?

Is there a difference between mothers and fathers in support and care about their

disabled child?

What do you think about the parenting skills of the average parent with a child with

disabilities?

Do the parents meet each other? Are they able to exchange experiences? Do you think

this would be helpful?

114

Appendix 8: Phases of thematic analysis

Phase Description of the process

Phase Description of the process

1

Familiarising yourself

with your data

Transcribing data, reading and re-reading the data, noting down

initial ideas.

2 Generating initial codes Coding interesting features of the data in a systematic fashion

across the entire data set, collating data relevant to each code.

3 Searching for themes Collating codes into potential themes, gathering all data relevant

to each potential theme.

4 Reviewing themes Checking if the themes work in relation to the coded extract (Level

1) and the entire data set (Level 2), generating a thematic ‘map’ of

the analysis.

5 Defining and naming

themes

Ongoing analysis to refine the specifics of each theme, and the

overall story the analysis tells, generating clear definitions and

names for each theme.

6 Producing the report The final opportunity for analysis. Selection of vivid, compelling

extract examples, final analysis of selected extracts, relating back

of the analysis of the research questions and literature, producing

a scholarly report of the analysis.

(Braun & Clarke, 2006)

115

116

Appendix 9: Quality criteria for thematic analysis

The quality criteria for a thematic analysis (after Braun & Clarck, 2006)

(Van Hove & Claes, 2011)