Shubhangi Vaidya

Exploring Constructs of Intellectual Disability and Personhood in Haryana and Delhi

Intellectual disability is one of the least researched areas in social science inquiry. This paper traces the complex interplay between the concepts of intellectual disability, gender and personhood. It outlines the socio-historical and cross-cultural variability of intellectual disability, and its connections with class, urbanisation and modernisation. Based on ethnographic material on the disabled in Delhi and the neighbouring state of Haryana, it presents case studies of two NGOs working with the intellectually disabled, namely, Arpan, a school for the mentally retarded in Rohtak, Haryana, and Action for Autism in New Delhi. It engages specifically with the notion of masculinity and the manner in which intellectually disabled male adults are feminised and infantilised. An attempt is made to understand how disabled individuals and their families seek social spaces for themselves and negotiate the social compulsions for ‘normalcy’ and competent adulthood.

Women with Disability and Reproductive Rights: Deconstructing Discourses

This article examines the experiences of disabled women in the context of sexuality and motherhood. Disability is a highly stigmatised identity and women with disability are viewed as asexual, dependent, in need of care, and therefore incapable of performing the culturally approved ‘womanly’ role of a sexual partner and nurturing mother. This article cites a range of cross-cultural studies that demonstrate how disabled women engage with sexuality and procreation. It examines how patriarchal social structures regulate the sexuality and fertility of women with disabilities and define and construct their humanity and personhood. It argues for a nuanced approach that respects the rights of women with disabilities to bodily integrity and personal dignity and at the same time takes cognisance of their need for support and assistance while making decisions about their bodies and lives.

Conclusion: Looking Back, Looking Forward

Summarizing the major themes and issues discussed in the earlier chapters, the concluding chapter of the book outlines a roadmap for the future. It outlines the possibilities of setting up models of community living and mutual interdependence that will enable adults with autism to live interdependently and with dignity, contributing and collaborating meaningfully with local communities. Future areas for research and intervention are also indicated.

Book Review: Kalpana Kannabiran and Asha Hans (Eds), India Social Development Report 2016: Disability Rights Perspective

Kalpana Kannabiran and Asha Hans (Eds), India Social Development Report 2016: Disability Rights Perspective. New Delhi: Council for Social Development and Oxford University Press, 2016, 356 pp., ₹995, ISBN: 978-0199474431.

Mapping the Terrain: Examining Discourses on Disability and the Family

This chapter introduces the concept of disability with reference to both medical and social dimensions. It discusses how the categories of mental or intellectual disabilities have been historically and cross-culturally understood and constructed. It discusses perspectives on the relationship between disability and the family with special reference to the Indian scenario. It opens up the category of autism as a diagnostic label highlighting the historical context of its emergence and evolution and the important milestones in research and practice that have shaped our current understanding. This lays the ground for an overview of the aims, objectives and major themes of this book.

“There Is Something Wrong with My Child”: Encounter with Autism

This chapter examines, through parental narratives, symptom recognition, help-seeking and obtaining a diagnosis of autism. It discusses the processes of grieving and the road towards acceptance with special reference to the differential gendered responses of mothers and fathers. It discusses the explanatory models of disability that emerge from family accounts and through detailed case studies, examines how families deal with the disability in everyday life and construct the personhood of the child.

The Right to Be Different: Autism and Advocacy in Urban India

This chapter attempts to engage with the heterogeneity of the disability experience by foregrounding the lived experiences and subjectivities of persons with intellectual and developmental disabilities and their caregivers. Specifically, it takes up for examination the diagnostic category of autism and its location at the intersections of biology and culture. The chapter attempts to map cultural and contextual understandings of disability and the impact of globalization and information flows on shaping these understandings. It argues for an appreciation of different ways of being in the world and the webs of mutual dependence and care in which we are all implicated. In this context, it examines the role of family driven NGOs and presents a case study of Action for Autism, an NGO in Delhi. The “right to be different” is a fundamental aspect of the plurality and diversity of the world in which we live.

Shrinking Circles of Support: The Urban Family in Transition

The experiences of siblings, grandparents and other family members vis-a-vis the autistic child are discussed. The role of siblings as caregivers and the sole means of support after the parents and the impact of this responsibility on their lives and futures is examined. With regard to grandparents, the differential responses of paternal and maternal grandparents, and the changing understandings of developmental disabilities across the generations are presented. The central theme of the chapter is the dwindling of traditional kinship and community support in the expanding urban space, and the need to forge new ties and solidarities with other families of children with disability and the wider community.

Unending Care and an Uncertain Future: The Challenges of Parenting a Child with Autism

The chapter examines the impact of the child’s autism on parents with a gendered lens, with special reference to the ideology and practices of parenthood in urban India. Urban India is a site where traditional gender roles undergo change and, paradoxically, get reinforced. The presence of a child with disability in the family complicates the gendered division of labour and caregiving. The chapter discusses the experiences, beliefs and practices of mothers and fathers in the everyday business of parenting a child with disability and the impact upon their marital relations and family functioning. It explores how families factor in the disability into their day-to-day functioning and negotiate with it, drawing upon personal, relational and cultural resources to make sense of disability.

Disability, Society and State: New Mobilizations and Movements

The chapter discusses the growth of mobilizations around intellectual and developmental disabilities in the urban space. The role of family-driven NGOs in creating awareness about disabilities like autism, creating services and empowering families; the expansion of information and communication technologies, social networking and virtual communities which make it possible for families in difficult circumstances to network is discussed. A detailed case study of the Delhi-based organization Action for Autism is undertaken to explicate the themes outlined above. The chapter critically analyses the role of the state with a particular focus on laws and policies for persons with disability and their families. It discusses the contribution of the autism voice to the disability discourse arguing for a nuanced understanding of the different subjectivities that constitute the disability experience and raises questions about autistic futures and possibilities for independent living.