Baharul Islam Laskar (blaska...@gmail.com) and Archana Sarma are with the Department of Sociology and Social Work, University of Science and Technology, Meghalaya.
Disability, a socially defined global phenomenon, varies from state to state in India, and is based on gender and rural–urban backgrounds. A study conducted in Sipajhar block of Assam shows that physically and mentally challenged schoolchildren face severe discrimination. As the existing policies and programmes are insufficient to wipe out the stigma attached to their lives, we need widespread awareness programmes to give the persons with disabilities a dignified life and to include them in the mainstream development processes. Disability is a socially defined phenomenon. It has all-encompassing social consequences for individuals, and has a significant impact on societies (Barnartt 2005). The social reality of disability is characterised by “considerable variation in the experience of impairment by large numbers of people who nonetheless share common conditions of exclusion, marginalisation, and disadvantage” (Williams 2001: 141). Historically, different societies have elucidated the place of disability in the social order. The Neolithic tribes believed that disabilities were caused by spirits, and they used to perform skull surgeries to discharge the evil spirits (Albrecht 1992). The ancient Greeks considered disabled persons not as human beings, and hence, abandoned them to die (DePoy and Gilson 2004). Romans also left children with rigorous disabilities to die, but provided help to persons with disabilities with an anticipation that they would be positive and satisfied (Morris 1986). Similarly, in ancient days, persons with disabilities in Asia were also treated most inhumanely by society and often such persons had no other options for their daily bread except begging. Ancient Zoroastrian scripture dating back 2,500 years in Persia envisioned an ideal world with no disabilities. However, the attitude towards persons with disabilities gradually changed after the Enlightenment period in the mid-17th and 18th centuries. In rural agrarian societies, family and communities used to integrate those who were unusual. Slowly, the number of institutions that housed the unproductive, including disabled people, also proliferated. The original intent of some of these organisations was to improve the status of the disabled, but frequently these institutions had turned into warehouses with subhuman conditions due to lack of resources (Foucault 2006). Discrimination against children with disabilities can be observed in terms of exclusion from education and healthcare, limited opportunities for play or access to cultural life, denial of family life, vulnerability to violence, poverty, and exclusion from participation in decision-making. It also undermines self-esteem and self-confidence among children, and particularly among girls with disabilities (WHO 2011). Accordingly, disability has been conceptualised and addressed as a human rights issue in different forums. It is observed that persons with disabilities who belong to poor families are more marginalised and disadvantaged by various factors, such as lack of access to productive resources and to opportunities, and lack of information and skills that could have enabled them to participate in social, economic and political processes. It is also found that disabled women and girls are more vulnerable to elimination (Kodali and Sitaramacharyulu 2011). Data on Disabled Persons Globally there are around 785–975 million (15.6%–19.4%) persons above 15 years of age living with disability. The number of disabled people varies depending upon age, sex, stage of life, exposure to environmental risks, socio-economic status, culture and available resources; all of which vary markedly across locations (WHO 2011). As per this data, 2.9% people are severely disabled all over the world, and 15.3% are moderately and severely disabled. More females than males generally belong to both the severe disability and moderate and severe disability categories, with the exception of males belonging to the age group of 0–14 years who number slightly higher in the moderate and severe disability category. In high-income countries, the proportion of severe disability is 3.2% and moderate and severe disability is 15.4%. Among the low- and middle-income regions, the proportion of severe disability is highest in Africa (3.1%) and lowest in Americas (2.6%); while the proportion of moderate and severe disability is highest in Europe (16.4%) and lowest in the Eastern Mediterranean (14%). Among children (0–14 years), 0.7% suffer from severe disability and 5.1% suffer from moderate and severe disability. It is further observed that the percentage of severe disability among boys and girls is equal (0.7%), while the percentage of moderate and severe disability among boys (5.2%) is more than girls (5.0%). On the other hand, among those aged 60 and above (≥ 60), both severe and moderate and severe disability occurs more among females (World Bank 2004). The high severe disability in high-income countries is a serious concern, which needs to be addressed. Data in the Indian context reflects that out of a total of 2,68,10,557 disabled persons, 69.5% are in rural areas and 30.5% are in urban areas. Among the total disabled persons, 54.5% are literate and 45.5% are illiterate. It is found that the highest number of disabled have movement disability, followed by hearing and sight. The lowest number of disabled are those with mental illness, followed by mental retardation and speech disability. Further, in the 0–6 years age group, there are 20,42,887 disabled persons, of which 54% are males and 46% are females. Again, 71% are in rural areas and 29% are in urban areas. As per the Census 2011, the highest number of disabled children is in Uttar Pradesh (4,14,824), followed by Bihar (2,90,999) and Maharashtra (2,17,361). On the other hand, the number of disabled children is the lowest in the union territories of Lakshadweep (77) and Daman and Diu (113) (Census 2011). It is also observed that in all types of disability, the number of boys is more than the number of girls and the reason for this is not yet explored. Sociological research on disability or handicap or incapacity includes acclimati0n to incapacity through socialisation methodologies and supposition of a debilitated part, understanding handicap as a type of abnormality, the minority gathering model of inability, rise of incapacity developments, and administration of disease and incapacity in individuals’ ordinary lives (Yakkaldevi 2014). This study understands the scenario of disability and the challenges faced by such children in Sipajhar block in Darrang district of Assam. The specific objectives of the study are as follows: (i) to look into the macro picture of disability in India and the state of Assam; (ii) to study the status of physically and mentally challenged schoolchildren in Sipajhar block, Darrang, Assam; and (iii) to put forward suitable practical suggestions for policymakers and policy implementers. As per the secondary data collected from internet and library sources, including the office of the Axom Sarba Siksha Abhijan Mission of Sipajhar block, Darrang, there were 706 disabled schoolgoing children and some of them had dropped out. Out of this, a sample of 30 disabled children were selected by using the method of purposive random sampling for primary data. Among them, 29 children were disabled by birth and one became disabled after an early childhood accident. Two sets of interview schedules were prepared during the field trip, one for disabled children and another for schoolteachers. In addition to collecting primary data from the field, we conducted interviews and observations. The study area, Sipajhar, is located in Darrang district, at a distance of 80 km from Dispur, the state capital. The total area of Sipajhar is approximately 450 sq km, having 177 villages with 26 village panchayats, three primary health centres, two community health centres, and four police stations. Sipajhar block has 344 government and provincialised schools with 24,392 students, including 706 disabled children. All these schools have drinking water facilities, common toilets, girls’ toilets, electricity, female teachers and ramp facilities. Disability in Assam In Assam, like other states, disability varies across districts, from rural to urban and by sex. The Census 2011 data shows that out of 4,80,065 disabled persons in Assam, 53.6% are males and 46.4% are females. Further, 86.5% of the disabled are in rural areas and only 13.5% are in urban areas. Going deeper into rural–urban distribution by type, results of this study show that the proportion of disability is much higher in rural areas, ranging from 82.4% in other disability to 88.8% in multiple disability. By the type of disability, it is seen that the higher proportion (21.2%) is due to hearing impairment, which is followed by other causes (18.2%), vision impairment (16.8%), movement disability (15.8%), multiple disability (10.3%), speech disability (8.3%), mental retardation (5.5%) and mental illness (3.9%). It is found that 51.7% disabled persons are literate in Assam, and 43.8% among them are males and 60.9% are females. By the type of disability, it is found that the proportion of literates is more among those with multiple disability (73.2%), followed by those with disability in speech (61.4%) and mental retardation (55.9%), while literacy rates are lower among those with other disability (41.9%), followed by those with disability in hearing (47.7%), disability in movement (48.7%) and visual impairment (50.7%) (Census 2011). As reflected in Figure 1, a comparison of disability in Assam with the national scenario shows that a higher proportion of disabled persons in Assam are living in rural areas (86.5% as compared to 69.5%), and the literacy rate among disabled persons is comparatively low, and the overall literacy rate of the state is also low compared to the national literacy rate (51.7% as compared to 54.5%). Likewise, the comparatively lower overall literacy rate in the state is 73.18% as compared to 74.04%. The census data also shows that among the 0–19 years population in Assam, the total number of disabled persons is 1,34,479, that is, 28% of the total disabled persons in the state belong to this age group. Further, 54% of the disabled in this category are males, while 46% are females. Again, 88% of the disabled in this age group are in rural areas (Census 2011), which is of grave concern. Inter-district variations are also observed across Assam with Nagaon (45,125) having the highest number of disabled persons, and Dima Hasao (2,422) having the lowest number of disabled persons. Data on disability in Darrang district shows that out of the 16,506 disabled, 27.8% are children aged 0–19, 95.8% stay in rural areas and only 4.2% are in urban areas. Further, 53.8% are males and 46.2% are females. By the type of disability, it is found that 19.5% suffer from hearing impairment, 16.8% have a physical disability, 15.2% have vision impairment, 13.3% suffer from multiple disability, 10.4% have speech disorder, 5.1% suffer from mental retardation, 4.5% have mental illness, and 15% have other disabilities (Census 2011). Problems of the Disabled Disability is a universal experience with economic and social costs to individuals, families, communities and nations. Children with disabilities are often regarded as inferior, and this exposes them to increased vulnerability. Discrimination based on disability has manifested itself in marginalisation from resources and decision-making, and even in infanticide (UNICEF 2013). Children under the age of five years in developing countries are exposed to multiple risks, including poverty, malnutrition, poor health, and unstimulating home environments, which can impair cognitive, motor, and social–emotional development (Grantham-McGregor et al 2007). Children who screened positive for increased risk of disability were also found to be (i) from poorer households; (ii) facing discrimination and restricted access to social services, including early-childhood education; (iii) underweight and having stunted growth; and (iv) subject to severe physical punishment from their parents (UNICEF 2008). UNESCO’s Global Monitoring Report (GMR), based on the analysis of Multiple Indicator Cluster Surveys (MICS) from four countries, notes that the children at a higher risk of disability are far more likely to be denied a chance to go to school (UNESCO 2014). Evidence also suggests that school completion rates are lowest amongst children with disabilities, even when they are compared to other marginalised groups (UNESCO 2010). Most importantly, persons with disabilities themselves remain largely outside the policy and implementation framework, at best as clients rather than as active participants in development. There is also evidence in key areas like employment that disabled persons are falling further behind the rest of the population, risking the deepening of their poverty and social marginalisation. The slow progress in expanding opportunities for disabled persons in India results in substantial losses to people with disabilities themselves, and to society and the economy at large in terms of underdeveloped human capital, loss of output from productive disabled people, and impacts on households and communities (World Bank 2007). Disability among children is closely related to their education, especially in terms of not attending schools and dropouts. According to the World Bank’s data, children with disabilities in India are five and a half times more likely to be out of school than non-disabled children. Currently, 52% of adults with disabilities are illiterate, compared to 35% amongst the general Indian population.1 Physically or mentally challenged children are largely outside the school system compared to all children at both national and state levels (Table 1). In India, 28.07% of physically or mentally challenged children are out of school, while among all children only 2.97% are out of school. Similarly, in Assam 31.88% of challenged children are out of school, while among all children only 2.88% are out of school. Further, Table 1 shows that in Assam children with multiple disability are mostly out of school (73.01%), followed by children with speech disability (45.19%), children with hearing disability (36.60%), and orthopaedically disabled (24.80%), visually disabled (18.22%) and mentally disabled (13.80%) children. It is also interesting to note that the proportion of out-of-school children among these groups is higher in Assam as compared to the national level, except for children with mental disability. Costs of Disability The costs of disability are significant, but difficult to quantify. These include direct and indirect costs borne by (i) people with disabilities and their families and friends and employers, and (ii) society. Comprehensive estimates of the cost of disability are scarce and fragmented, even in developed countries. Many reasons account for this situation, including (i) definitions of disability often vary, (ii) there is limited data on the cost components of disability, and (iii) there are no commonly agreed methods for cost estimation. Direct costs include additional costs that people with disabilities and their families incur to achieve a reasonable standard of living, and disability benefits—in cash and kind—paid for by governments and delivered through various public programmes (WHO 2011). It is further elaborated that the costs associated with disability include such direct expenses as medical treatment, travel, rehabilitation or assistance with care, and such opportunity costs as the income forgone when parents or family members give up or limit their employment to care for a child or children with disabilities (Mont and Nguyen 2011). Regarding violence, children with disabilities are three to four times more likely to be the victims of violence. The prevalence of violence against children with disabilities ranges from 26.7% for combined measures of violence to 20.4% for physical violence, and 13.7% for sexual violence (UNICEF 2013). Disability in Sipajhar Block The analysis of secondary and primary data on disability collected from selected schools in Sipajhar block reflects the following findings. Out of the 14 selected schools, we found 48 disabled students and 30 among them were selected for this study. Table 2 shows that Duni Higher Secondary School and Daomornai Higher Secondary School had the highest number of physically and mentally challenged students, and Dalanghat High School as well as Pathatrighat Girls’ Higher Secondary School had the lowest number of such students. It was found that out of the 30 disabled children, 23.3% students were suffering from disabilities of eyes and legs, 10% had disabled hands, 6.7% were mentally challenged, and 36.7% students were suffering from other types of disability. Our data showed that 50% of the disabled students were in the age group of 13–15 years, 23.3% students in the 10–12 years age group and 23.7% students belonged to the 6–9 years age group. It was observed that a majority of the disabled students were male (53.3%), while 46.7% were females; 86.7% such students were Hindus and 13.3% were Muslims. Further, it was found that, among the physically or mentally challenged students, 46.7% students were from Other Backward Classes (OBCs) and 6.7% belonged to Scheduled Castes (SCs). Regarding receiving medical facilities, only 6.7% disabled students were getting regular facilities, 76.7% were getting occasional facilities and 16.7% were not receiving any medical facility. Regarding receiving any government assistance, it was found that 86.7% of them were getting assistance and 13.3% were not receiving any sort of assistance. It was found that one-third of these schoolchildren faced problems like ill-treatment from society, while 40% expressed that people would make fun of them. During our field trip, 66.7% of the disabled students said that their disability affects their studies, while 33.3% of students did not find any problem. It was further observed that 83.33% were not aware of the provisions of any special schools for disabled children. A look at the parents’ education shows that 3.3% of the parents were postgraduates, 26.7% were graduates, 33.3% passed higher secondary (10+2), 26.7% had matriculated (10th pass) and 10% had not matriculated. We observed that the performance of the physically or mentally challenged children was similar to the performance of other children. Most of the disabled students were not clear about their aims in life. Only a few of them wanted to be good teachers. Conclusions Disability and its challenges are major concerns for 21st century civilised societies across the world. The scenario is grave as both society and the state treat mentally or physically challenged persons, particularly disabled children in an inhumane way generally. At the same time, many of the disabled children or their parents are also not confident enough to seek equal participation and they are not aware of the facilities available to them. Society believes that persons with disabilities cannot undertake productive work. Such an impression needs to be eradicated. Disabled persons persist in the face of prejudice and lack of access to benefits. Promotion of disability rights, providing equal opportunities to persons with disabilities, and empowering them to take decisions are the challenges ahead for society and for social workers. Disabled persons should be made aware of existing social security measures like education facilities, education allowances, job reservations, priority for house allotments, economic assistance for self-employment, and travel concessions. The teachers and parents/guardians also need to be sensitised to such issues. The state also has an equally important role to play in ameliorating the plight of its disabled citizens. In India, during the 1880s, the Christian missionaries started schools for the disabled on the grounds of charity. This was followed by government initiatives to establish separate workshops, model schools, central Braille presses and employment exchanges for the disabled population of the country. However, the changing approaches to disability from the charity model to the human rights model have resulted in diversity of policy and practice (NCERT 2006). Children with disability need education all the more to supplement their differential talents so that they can prepare themselves for a happy, productive, and useful life. In 1974, with the commencement of the comprehensive Integrated Education for Disabled Children (IEDC), a major change in education was adopted for the children with disabilities. But, only with the formulation of the National Policy on Education (NPE), 1986 (through the 86th constitutional amendment), was inclusive education for disabled children treated as essential. Besides, a national policy for persons with disabilities was adopted in 1993, which emphasises the need for including such children in the mainstream general educational system (Vidhyanathan and Devan 2013). The NPE made a provision to educate the mildly and moderately disabled children in common settings. Section 39 of the Persons with Disability Act, 1995 provides 3% seats to children with disability in every school. The District Primary Education Programme (DPEP) and Sarva Shiksha Abhiyan (SSA) also provide a major thrust to integrate and include disabled children in mainstream education. The essentials of inclusion of disabled children, as pointed out by UNICEF, involve changing attitudes, capability, supporting children and their families, community-based rehabilitation, assistive technology and universal design, etc. A strong foundation to include disabled children mainly requires inclusive health and education. Inclusive health should cover immunisation, nutrition, water, sanitation and hygiene, sexual and reproductive health and HIV/AIDS, and early detection and intervention. As per UNICEF’s 2013 study, inclusive education of children with disabilities should focus on their early education at home, working with teachers, involving parents, communities and children, and the lines of responsibility of the government and its partners. In addition, strengthening preventive and curative healthcare services, ensuring inclusion in education, and increasing the participation of disabled in the workplace are also indispensable. A lot of improvement is required in available information on disability, and simultaneously we have to reduce the stigma attached to disability. There should be efforts to minimise disability by giving proper immunisation, early detection, and providing better outreach for rehabilitation. Inclusion of disabled children in basic services should be guaranteed through inclusive education, health and social protection programmes (World Bank 2007). In a nutshell, a concerted effort is required from all sections, including parents, teachers, government and non-governmental agencies, and academicians and media personnel to ensure the right to equality among the disabled children of our country. The existing policies and legislations schemes, and programmes need to be implemented in letter and spirit for the greater interest of this socially excluded group. Note 1 “Education for Children with Disabilities in India,” Eldis, viewed on 8 November 2016, http://www.eldis.org/index.cfm?objectid=1328E2D6-9536-3AD7-1CF3657DD0D9F.... References Albrecht, G (1992): The Disability Business: Rehabilitation in America, London: Sage. Barnartt, Sharon (2005): Report of the ASA Committee on the Status of Persons with Disabilities (PWD), viewed on 23 August 2014, http://www.asanet.org/images/asa/docs/pdf/Disabilities%20Status%20Commit.... DePoy, E and S Gilson (2004): Rethinking Disability: Principles for Professional and Social Change, California: Belmont Brooks/Cole. Foucault, M (2006): History of Madness, London: Routledge. Grantham-McGregor, S , Yin Bun Chenng, Santiago Cueto, Paul Glewwe, Linda Ritcher and Barbara Strpp (2007): “International Child Development Steering Group Developmental Potential in the First 5 Years for Children in Developing Countries,” Lancet, Vol 369, pp 60–70. Kodali, Rajagopal Rao and P Sitaramacharyulu (2011): “A Study on the Attitudes of Societal Members towards the Disabled Children in Loni, India,” International Journal of Biological & Medical Research, Vol 2, No 4, pp 1127– 30. Mont, Daniel M and Viet Cuong Nguyen (2011): “Disability and Poverty in Vietnam,” World Bank Economic Review, Vol 25, No 2, pp 323–59. Morris, R (1986): Rethinking Social Welfare: Why Care for the Stranger? New York: Longmore. NCERT (2006): “Position Paper 3.3—National Focus Group on Education of Children with Special Needs,” National Council of Educational Research and Training, New Delhi. Yakkaldevi, Ashok Shivaji (2014): “The Sociology of Disability,” Reviews of Literature, Vol 2, No 3. UNESCO (2010): “Reaching the Marginalized,” EFA Global Monitoring Report 2010, UNESCO, Paris. — (2014): “Teaching and Learning: Achieving Quality for All,” EFA Global Monitoring Report 2014, UNESCO, Paris. UNICEF (2008): “Monitoring Child Disability in Developing Countries: Results from the Multiple Indicator Cluster Surveys,” United Nations Children’s Fund, New York. — (2013): “The State of the World Children: Children with Disabilities,” United Nations Children’s Fund, New York. Vidhyanathan, S and K Devan (2013): “Inclusion of Disabled Children in General Schools in Puducherry,” IOSR Journal of Humanities and Social Science, Vol 12, No 3, pp 57–64. WHO (2011): “World Report on Disability 2011,” World Health Organization, Geneva. Williams, Gareth (2001): “Theorizing Disability,” The Handbook of Disability Studies, G L Albrecht, K D Seelman and M Bury (eds), Thousand Oaks, California: Sage. World Bank (2004): “Data and Statistics: Country Groups,” World Bank, Washington, DC. — (2007): “People with Disabilities in India: From Commitments to Outcomes,” Human Development Unit, South Asia Region, World Bank, Washington, DC. http://www.epw.in/journal/2017/36/perspectives/disabled-schoolchildren-and-their-challenges.html -- Avinash Shahi Doctoral student at Centre for Law and Governance JNU Disclaimer: 1. Contents of the mails, factual, or otherwise, reflect the thinking of the person sending the mail and AI in no way relates itself to its veracity; 2. AI cannot be held liable for any commission/omission based on the mails sent through this mailing list.. To check if the post reached the list or to search for old posting, reach: https://www.mail-archive.com/ai@accessindia.inclusivehabitat.in/maillist.html _______________________________________________ Ai mailing list Ai@accessindia.inclusivehabitat.in http://accessindia.inclusivehabitat.in/mailman/listinfo/ai
