Full Paper Social and Spatial Disparities in Disability in India: An Investigation by Definition Difference 1 2 Priyanka Yadav and Ajit Kumar Yadav Abstract The present paper focuses on critical analysis of definitional and numerical difference between the two Census 2001, 2011 and the prevalence by different types of disability calculated from NSS, 2002. This paper presents a critical comparative study between the disability definitions in the Census and the NSS 58th round, 2002. This paper also documents the effect of definitional differences in the prevalence estimates of disability from the Census and National Sample Survey. Keeping these definitional gaps in mind, future disability surveys can be designed so that the estimates are similar and uniform at the National level. Introduction Disability as a potential measure of health status of a population has not received much attention, and studies considering both fatal and non-fatal health outcomes for measuring the health status are limited and have not been potentially explored yet at national and sub- national levels in India. In an era where inclusive development is being emphasized as the right path towards sustainable development, focused initiatives for the welfare of disabled persons are essentials. There is a need for strengthening disability statistics in the country. According to WHO estimates, the total global number of people with disabilities is over one million and about 15% of world population suffers from some form of disability. There are various definitions of disability given by various international organizations and surveys. 1 Doctoral Fellow, Centre for the Study of Regional Development, Jawaharlal Nehru University, Delhi, India, Email: [email protected] 2Doctoral Fellow, International Institute for Population Science, Mumbai, India Email: [email protected] According to World Health Organization (WHO) “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.” The official prevalence of disability was estimated as 2% in the year 2001-2002 but was found to vary when estimated from two of the most reliable sources of data on disability: Census Report of India, 2001 and National Sample Survey, 58th round, 2002 (Mitra and Sambamoorthi, 2006). Thus there was an obvious gap in the definition and categorization of disability in the NSS and Census. Mitra and Sambamoorthi, in 2006 pointed out some of the basic definitional differences between the various types of disability on which data has been collected by both NSS and Census. As for example, in their paper they discussed that there was a difference in the number of people who were visually disabled: according to the Census report, 2001 there were 10.6 million visually impaired persons whereas from NSS, 2002 the number came down to 2.8 million persons. This was due to the ignorance of people who had no vision testing done prior to the survey by the National Sample Survey, 58th round. However, the paper by Mitra and Sambamoorthi, 2006 gives us an overview of these differences in the year 2001-2002. There has been some changes in the definition of disability and its types between the Census Surveys conducted in 2001 and 2011. The last survey on disability conducted by the National Sample Survey Organization was its 58th round in 2002. This particular round had significant numerical and definitional differences with the Census of India survey conducted in 2001. There will be obvious numerical difference in disability count between NSS 58th round and Census, 2011 due to the nine year time gap. Nonetheless, the current paper aims to investigate the development and differences in the disability definitions in the three most important and widely used sources of disability data over the time period of 2001 to 2011. The paper also shows the social and spatial disparities in disability in India in context of definition differences by major data sources. However, data sources and methodological approaches (definitions) play a major role in showing the prevalence of disability. The existing rough estimations from international agencies such as the UN or the World Bank suggest that 10–12% of the global population have at least one disability . On the other hand, the WHO World Health Survey and the WHO Global Burden of Disease study provide higher figures (16–19%). According to the WHO World Health Survey estimation for 2002–2004, disability prevalence in India is much higher (25%) than the global average. Although the percentage of people with disabilities is lower in India than in neighboring Bangladesh (32%), it is almost twice as high as in Pakistan and Sri Lanka. It has been acknowledged that the WHO WHS and other survey-based estimates suffer from important deficiencies related to coverage, representativeness, exclusion of most vulnerable groups, and reporting biases; and that these deficiencies may seriously distort international comparisons. There is a wider spatial variation in disability. The integration of GIS with the prevalence of disability statistics can serve the dual purpose of initiation and assessment of public health programmes. The states of concentration of disability can be seen at a glance, and a quick comparative assessment of states which need urgent intervention programmes can be identified. Once states which need public health intervention on priority basis are earmarked, critical paths for distribution of health facilities and services can further be taken up in a manner to optimize time, manpower and resources. However, there are some studies on disability prevalence in India and states but no systematic study of the disparities in the prevalence of disability in social and spatial context by definitional difference have been conducted. Thus we believe that this study adds important information to the existing literature. MODELS OF DISABILITY: Models are an useful framework which gain an understanding of the disability issue. Disability is a multidimensional and dynamic concept, therefore models have been developed to easily explain , measure, interpret the factors associated with disability. Disability involves the interaction of a person health condition, its personal characteristics , the physical environment and the social environment. There are number of models of disability which have been defined over the last few years. The four major models are listed below: The social model: It perceives disability as a socially created problem and not of the characteristic of individual, and it requires social change. This perspective states that the limitations are caused due to rigid physical or social environment. The model gives a clear picture that the disability is the result of societal perception rather than barriers to participation of life. The person with disabilities faces discrimination and segregation similar to those of oppressed minority groups. It advocates for equality among individual by altering society’s perception. The Medical model - Health is defined by absence of disease. It considers disability as the problem of the individual which is directly caused by a disease, an injury or other health conditions. Individual with disability are deviated from a normal healthy life. Treatment and interventions can move a disabled individual from a diseased or unhealthy state towards a normal or healthy state. This model ignores the role of the individual and their society. Rehabilitation has an important role to play in bringing the person back or close to the normal state. The Nagi model - It was created by Saad Nagi in 1965 to study the disability for the United States Social Security Administration. This model is also known as the Disablement Model or Functional limitation paradigm. The elements of Nagi model are:- The Active Pathology- describes an interruption in the normal body process which leads to deviation from the normal state. It leads to impairments, which are anatomical or physiological abnormalities or losses. Impairment - complete loss, or damage or interruption in the normal body structure or system. It is a casual chain leading to disability. Functional limitation – restriction on individual performance in its normal daily activities. Nagi (1991) defined functional limitation as “an inability or limitation in performing socia y defined roles and tasks expected of an individual within a socio-cultural and physical environment”. Disability - inability to do something. It is physical or mental limitation in the context of state. It promotes social and cultural relativistic view of disability. The International Classification of Functioning- The WHO developed the International Classification of Impairments Disabilities and Handicaps (ICIDH) in the early 1980s. In 2001 it was revised and named as International Classification of Function and Disability (ICF). The ICF framework describes changes to health as the dynamic interaction between the health condition and contextual factors. ICF is an integration of social and medical model. “ICF attempts to achieve a synthesis, in order to provide a coherent view of different perspectives of health from a biological, individual and social perspective” (World Health Organization, 2001) The ICF Framework use two qualifiers to record and rate the severity of the problem. It gives two scales of 0–9 for assessment. The Performance Qualifier- it measures the individual’s performance in the current environment in which