Experience and Agency of Children with Intellectual Disabilities in Schools : An Ethnographic Study in Haryana, India
India currently has more than 24 million children within the age group of 0-18 years experiencing some form of disability. Among them, India has the highest population of children at risk of developmental disabilities (UNICEF, 2011). However, there is a significant dearth of knowledge regarding their lived experiences. Surprisingly, qualitative understandings of the lives of children with intellectual disabilities within their school environments are lacking in India. Thus, this research aims to fill this gap by focusing on comprehending the lived experiences and agency of these children within their schools, families, and neighborhoods. Recognizing them as social agents has the potential to challenge the marginalized status often attributed to them. The objective of this research was to understand the lived experiences of children with intellectual disabilities across various school setups, including government schools, private schools, and mainstream schools. Furthermore, it seeks to understand the values and perspectives of the schools, school authorities and teachers, and the manner in which children with intellectual disabilities employ their agency in their day- to-day lives within different educational structures. Ethnographic research was, therefore, conducted in four government schools, two private schools and two special schools in Karnal district, Haryana, India. Haryana was chosen due to the existence of previous research on the cultural understanding of disability in the state. A total of 25 children with intellectual disabilities and 44 school teachers were interviewed and observed. Classroom observations and shadowing also served as important methods of data collection. The findings reveal that policies, school structures and processes, as well as teachers' practices and attitudes, continue to perpetuate exclusionary practices for children with intellectual disabilities. The notion of "inclusive schooling" remains superficial within the Indian context. However, within these exclusionary systems and processes, a diverse range of differences were noted in terms of the experiences, beliefs, and preferences of children. These differences are influenced by a complex interplay of their social environment (school and home), cultural norms and personal attributes. Academic aspirations and experiences of personal friendship emerged as dynamic and intricate aspects of their lives. Evaluating these elements presents challenges as children's academic achievements and friendships are continually evolving, forming, and dissolving. Data analysis also demonstrates that children with intellectual disabilities not only actively construct meanings but also possess an awareness of the cultural context in which they exist. Their interactions with others, including the researcher, were heavily influenced by these cultural contexts. Their actions contribute differently to social and relational networks, depending on the barriers they encounter within each institution. The performativity of their agency was explored through an understanding of their "silences," which proved to be an essential element in analyzing their agency.Additionally, their agency was examined through their utilization of digital technologies which was actively used by children to maintain friendships with old friends, to develop new friendships and for entertainment purposes. This research, therefore, aims to integrate the notions of agency, culture, and structure in order to gain a comprehensive understanding of the experiences of children with intellectual disabilities in various educational environments in an Indian state.