INCLUSION OF CHALLENGED PERSONS IN RURAL SETTING A THESIS SUBMITTED FOR THE DEGREE OF DOCTOR OF PHILOSOPHY IN PSYCHOLOGY By Amitabh Mehrotra Under the Supervision of Dr. Pallavi Bhatnagar Professor Department of Psychology Lucknow University, Lucknow, INDIA Department of Psychology University of Lucknow Lucknow, INDIA 2015 1 2 3 4 C O N T E N T S CHAPTER DETAILS PAGE No. CHAPTER -1 INTRODUCTION 1-32 Disability: Concept 1-2 Disability: Models 2-5 Disability: Types 6-8 Cerebral Palsy: The Concept 8-19 Inclusion of Disability in Various Programmes of 19-23 Some Relevant Ministries Rural Scenario: Grassroot Realities 24-26 Health 27-28 Mental Health 28-29 Self Other Relatedness 29-32 REVIEW OF LITERATURE 34- 55 1. Demographic Variables 34- 40 Age and Disability 34-35 Gender and Disability 35-37 Locale and Disability 37-38 Socio Economic Status and Disability 38 Poverty and Disability 38-39 Employment and Disability 39-40 2. Personality Variables 40- 46 Health and Disability 40-42 Health Perceptions and Disability 42-44 Mental Health and Disability 44 Acceptance of Disability 44-45 Mental Health of Challenged in Rural & Urban 45 Sectors Current Scenario in terms of Mental Health Services 45-46 5 3. Social Variables 46- 48 Social Perception and Disability 46-47 Social Interaction and Disability 47-48 4. Disability Related Variables 49- 55 Inclusive Education and Disability 49 Segregated Education 49 Accessibility and Disability 50-51 Education and Accessibility 51 Employment and Disability 51-52 Rehabilitation and Disability 52-55 CHAPTER -2 METHOD 56- 80 Towards the Problem 56- 65 Variables for Phase-A 66 Independent Variable 66 Dependent Variable 66 Variables for Phase-B 66- 67 Independent Variable 66-67 Dependent Variable 67-69 Profile of Deva Block of Barabanki District 70- 71 Sample Characteristics 71- 73 Tools and their Administration 73- 80 Efficacy of Intervention 73-74 Health Perception Interview Schedule 74-75 Anxiety Depression Stress Scale 75-79 Circle Technique 79-80 CHAPTER -3 RESULTS AND INTERPRETATION 81- 6 161 Phase A: Efficacy of the Inclusion 81- Intervention 100 Perception about Self: Then and Now 81-84 Perception of Self in Relation to Others: Then and 84-87 Now Behaviour of Others Towards PWDs: Then and Now 87-90 Attitude Towards Life: Then and Now 90-93 Perception About Health Related Problems: Then 93-95 and Now Benefits from the Program: Then and Now 96-97 Change Felt After Joining SPARC India 97- 100 Phase B- Health Perceptions, Mental Health 100- Status and Self Other Relatedness 161 Section B. I- Health Perceptions 100- 145 Section B. II- Mental Health Status 145- 154 Section B. III- Relational World 154- 161 CHAPTER -4 SUMMARY AND SUGGESTIONS 162- 170 ------- 7 LIST OF TABLES TABLES DETAIL PAGE NO. NO. Table 1.1 Classification of Disability 2 Table 1.2 Causes of Cerebral Palsy 13 Table 1.3 Rural Urban Gap of Literacy (Literacy Census, 2001) 25 Table 1.4 Health Indicators, National Health Report, 2010 26 Table 2.1 Distribution of the sample for Inclusion Project according 63 to gender, age and type of disability Table 3.1 Illustrate the typical responses, as well as their distribution 82 for the two periods of time Table 3.2 Perception of self in relation to others for the pre & post 85 intervention on Inclusion Table 3.3 Behavior of others towards PWDs pre & post intervention 88 on Inclusion Table 3.4 Attitude towards life pre & post intervention on Inclusion 91 Table 3.5 Perception about health & health related problems pre & 94 post intervention on Inclusion Table 3.6 Benefits from the program pre & post intervention on 96 Inclusion Table 3.7 Felt changes after joining SPARC India Project of Inclusion 98 Table 3.8 Semantic of Health according to challenge status 102 Table 3.9 Healthy person according to challenge status 104 Table 3.10 Essentials of Good Health according to challenge status 105 Table 3.11 Source of Information about Health according to challenge 107 status Table 3.12 Semantic of illness according to challenge status 107 Table3.13 Information Base of Diseases according to challenge status 109 Table 3.14 Healthy history according to challenge status 110 Table 3.15 Coping with Disease according to challenge status 110 Table 3.16 Health Perception at a glance 111 8 Table 3.17 Semantic of Mentally Healthy Individual according to 114 challenge status Table 3.18 Semantic of Happiness according to challenge status 116 Table 3.19 Semantic of sadness according to challenge status 117 Table 3.20 Mood status of the PWDs and Caregivers 118 Table 3.21 Semantic of Anxiety according to challenge status 120 Table 3.22 Cause of Mentally Disorder according to challenge status 121 Table 3.23 Essential for Mental Health according to challenge status 122 Table 3.24 Methods of coping with emotions 123 Table 3.25 Economic/ Financial Independence- standing on their feet 134 Table 3.26 Rights of Disabled person according to challenge status 136 Table 3.27 Rights of Disabled person according to challenge status 137 Table 3.28 Abilities of PWDs and Caregivers 142 Table 3.29 Plans for Disabled person according to challenge status 143 Table 3.30 Substance according to challenge status 144 Table 3.31 Sub Dimensions of Mental Health Status 146 Table 3.32 Endorsement Percentage for Anxiety Scale 149 Table 3.33 Endorsement Percentage for Depression Scale 151 Table 3.34 Endorsement Percentage for Stress Scale 153 ------- 9 LIST OF FIGURES FIGURES DETAIL PAGE NO. NO. Fig 1.1 Type of Disability according to Locale(NSSO, 2001) 7 Fig 1.2 Classification of Cerebral Palsy 11 Fig 1.3 Ataxic Cerebral 12 Fig 1.4 Ready Reckoner to Review of Literature 33 Fig 2.1 Level of conceptualization (Phase A & Phase B) 65 Fig 2.2 Sample Distribution across various phase 69 Fig 2.3 Distribution of sample according to Age 71 Fig 2.4 Distribution of sample according to Gender 72 Fig 3.1 Perception of self for the pre & post intervention on 83 inclusion Fig 3.2 Perception of self in relation to others for the pre & post 86 intervention on inclusion Fig 3.3 Behaviour of others towards PWDs pre & post intervention 89 on inclusion Fig 3.4 Attitude towards life pre & post intervention on inclusion 92 Fig 3.5 Perception about health and health related problems pre & 95 post intervention on inclusion Fig 3.6 Benefits from the program pre & post intervention on 97 inclusion Fig 3.7 Felt changes after joining SPARC India Project of inclusion 99 Fig 3.8 Sub Dimension of Health Awareness 101 Fig 3.9 Sub Dimension of Mental Health Perception 113 Fig 3.10 Sub Dimension of Mental Health Awareness 113 Fig 3.11 Sub Dimension of Perception of Disabled 129 Fig 3.12 Perception about Disability 130 Fig 3.13 Personal contacts with Challenged Persons 132 Fig 3.14 Perceptions of the Disabled 132 10 Fig 3.15 Other People‟s Perception 133 Fig 3.16(A) Presence of Self 155 Fig 3.16(B) Presence of Self 156 Fig 3.17(A) Centrality of Self 156 Fig 3.17(B) Centrality of Self 157 Fig 3.18(A) Size of Self 158 Fig 3.18(B) Size of Self 158 Fig 3.19 Number of significant others 159 Fig 3.20(A) Significant others 160 Fig 3.20(A) Significant others 160 ---- 11 CHAPTER-1 INTRODUCTION 12 INTRODUCTION “People are frequently said to be ‘disabled’ when they fall outside an accepted norm of function or behavior, thus the concept of disability ultimately rests upon a social judgment.” -- Sally French DISABILITY: CONCEPT The World Health Organization (2012) defines Disability as follows: "Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. Impairment is a problem in body function or structure. An activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus, disability is a complex phenomenon, reflecting an interaction between features of a person‟s body and features of the society in which he or she lives.” In India, different definitions of disability are introduced for various purposes and as such, they have been based on various criteria. No single standard exists in India to evaluate disability. More often different terms such as disabled, handicapped, crippled, physically challenged are used inter-changeably. IMPAIRMENT, DISABILITY & HANDICAP Disability has been understood differently by various cultures. Many cultures see it as a general form of punishment or gift from Gods or spirits (Stiker 1999, Ingstad and Whyte 1995). Through volumes of theoretical and empirical researches which address the problem of disabilities, a contemporary positive change 13 in conceptualization is emerging in terms of the positive expressions of challenge for disability and challenged persons for Persons with Disabilities (PWDs). The ICIDH (International Classification of Impairments, Disability and Handicaps) provides a classification of disability in three major categories of impairments, disabilities and Handicaps (Wood 1980) being given here in brief: Table-1.1: Classification of Disability Impairment is “any loss Disability is a “restriction Handicap is a “disadvantage for a or abnormality of or lack (resulting from an given individual, resulting from an psychological, impairment) of ability to impairment or disability that limits physiological, or perform an activity in the or prevents the fulfillment of a role anatomical structure or manner or within the that is normal (depending on age, function”. Examples of range considered normal sex and social and cultural factors) impairments include for a human being”.