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

  • Shubhangi VaidyaEmail author
Chapter
Part of the Dynamics of Asian Development book series (DAD)

Abstract

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.

Keywords

Autism Care Family Intellectual and developmental disabilities Difference NGO Action for Autism Advocacy 

References

  1. Asperger, H. (1991/1944). Autistic psychopathy in childhood. In U. Frith (Ed. & trans.), Autism and asperger syndrome. Cambridge: Cambridge University Press.Google Scholar
  2. Baron-Cohen, S. (1997). Mindblindness: An essay on autism and theory of mind. Massachussetts: M.I.T. Press.Google Scholar
  3. Benedict, R. (1934). Anthropology and the abnormal. Journal of General Psychiatry, 10, 59–80.CrossRefGoogle Scholar
  4. Bogdan, R., & Taylor, S. (1982). Inside out: The social meaning of mental retardation. Toronto: University of Toronto Press.Google Scholar
  5. Chakravarti, U. (2008). Burden of caring: Families of the disabled in urban India. Indian Journal of Gender Studies, 15(3), 341–363.CrossRefGoogle Scholar
  6. Dalal, A. K. (2002). Disability rehabilitation in a traditional Indian society. In M. Thomas & M. T. Thomas (Eds.), Selected readings in community based rehabilitation (Vol. 2)., Disability and rehabilitation in south Asia Bangalore: National Printing Press.Google Scholar
  7. Daley, T. C. (2002). The need for cross-cultural research on pervasive developmental disorder. Transcultural Psychiatry, 39(4), 532–551.CrossRefGoogle Scholar
  8. Daley, T. C. (2004). From symptom recognition to diagnosis: Children with autism in urban India. Social Science and Medicine, 58, 1323–1335.Google Scholar
  9. Daley, T., & Weisner, T. (2015). Evaluation of the parent child training programme. Autism Network, 10(3), 2–6.Google Scholar
  10. Davis, J. L. (1995). Enforcing normalcy: Disability. Deafness and the Body. London: Verso Press.Google Scholar
  11. Devlieger, P. J. (1998). Incompetence in America in comparative perspective. In R. Jenkins (Ed.), Questions of competence: Culture, classification and intellectual disability. Cambridge: Cambridge University Press.Google Scholar
  12. Edgerton, R. B. (1967). The cloak of competence: Stigma in the lives of the mentally retarded. Berkeley: University of California Press.Google Scholar
  13. Ferguson, P. M. (2001). Mapping the family: Disability studies and the exploration of parental response to disability. In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies. New Delhi: Sage.Google Scholar
  14. Foucault, M. (1967). Madness and civilization: A history of insanity in the age of reason. Cambridge: Cambridge University Press.Google Scholar
  15. Ghai, A. (2003). (Dis)embodied form: Issues of disabled women. New Delhi: Shakti Books.Google Scholar
  16. Ghai, A. (2015). Rethinking disability in India. New Delhi: Routledge.Google Scholar
  17. Ginsburg, F., & Rapp, R. (2010). Enabling disability: Rewriting kinship, reimagining citizenship. In L. J. Davis (Ed.), The disability studies reader (3rd ed.), NY: Routledge.Google Scholar
  18. Gleason, J. J. (1989). Special education in context: An ethnographic study of persons with developmental disabilities. Cambridge: Cambridge University Press.Google Scholar
  19. Goode, D. (1980). The world of the congenitally deaf-blind: Towards the grounds for achieving human understanding. In J. Jacobs (Ed.), Mental retardation: A phenomenological approach. Charles C. Thomas: Springfield, Illinois.Google Scholar
  20. Goodley, D. (2011). Disability studies: An interdisciplinary reader. New Delhi: Sage.Google Scholar
  21. Grinker, R. R. (2007). Unstrange minds: Remapping the world of autism. New York: Basic Books.Google Scholar
  22. Ingstad, B., & Whyte, S. R. (Eds.). (1995). Disability and culture. Berkeley: University of California Press.Google Scholar
  23. Jenkins, R. (Ed.). (1998). Questions of competence: Culture, classification and intellectual disability. Cambridge, UK: Cambridge University Press.Google Scholar
  24. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250.Google Scholar
  25. Kittay, E. F. (1999). Love’s labor: Essays on women, equality, and dependency. New York: Routledge.Google Scholar
  26. Klotz, J. (2003). The culture concept: Anthropology, disability studies and intellectual disability. Paper Presented to Disability studies and Research Institute (DsaRI) Symposium, “Disability at the cutting edge: A colloquium to examine the impact on theory, research and professional practice”. University of Technology, Sydney. September 12, 2003.Google Scholar
  27. Langness, L. L., & Levine, H. G. (1986). Culture and retardation: Life histories of mildly mentally retarded persons in American society. Dordrecht, The Netherlands: D. Reidel.Google Scholar
  28. Mehrotra, N. (2004). Understanding cultural conceptions of disability in rural India: A case from Haryana. Journal of Indian Anthropological Society, 39, 33–45.Google Scholar
  29. Mehrotra, N., & Vaidya, S. (2008). Exploring constructs of intellectual disability and personhood in Haryana and Delhi. Indian Journal of Gender Studies, 15(3), 317–340.CrossRefGoogle Scholar
  30. Miles, M. (1995). Disability in an eastern religious context: Historical perspectives. Disability and Society, 10(1), 49–70.CrossRefGoogle Scholar
  31. Miles, M. (2000). Disability in south Asia: Millenium to millenium. Asia Pacific Rehabilitation Journal, 11, 1–10.Google Scholar
  32. Murray, P. (2006). Being in school? Exclusion and the denial of psychological reality. In D. Goodley & R. Lawthom (Eds.), Disability & psychology: critical introductions & reflections. Basingstoke: Palgrave Macmillan.Google Scholar
  33. Nuttal, M. (1998). States and categories: Indigenous models of personhood in northwest Greenland. In R. Jenkins (Ed.), Questions of competence: Culture, classification and intellectual disability. Cambridge, UK: Cambridge University Press.Google Scholar
  34. Reinders, H. S. (1999). The limits of rights discourse. Paper Presented to the Roundtable of the Special Interest Research Group on Ethics, International Association for the Scientific Study of Intellectual Disabilities. Doorn, The Netherlands, April, 1999.Google Scholar
  35. Sarrett, J. (2012). Autistic human rights: A proposal. Disability Studies Quarterly, 32.Google Scholar
  36. Silverman, C. (2008). Fieldwork on another planet: Social science perspectives on the autism spectrum disorders. BioSocieties, 3(3), 325–341.CrossRefGoogle Scholar
  37. Straus, J. N. (2010). Autism as culture. In L. J. Davis (Ed.), The disability studies reader (3rd ed.). New York and London: Routledge.Google Scholar
  38. The Right of Children to Free and Compulsory Education Act (2009). Retrieved from http://eoc.du.ac.in/RTE%20-%20notified.pdf
  39. Turner, B. S. (2006). Vulnerability and human rights. University Park, PN: The Pennsylvania State University Press.Google Scholar
  40. Vaidya, S. (2011). Mothering as ideology and practice: The experiences of mothers of children with autism spectrum disorder. In M. Walks & N. MacPherson (Eds.), An anthropology of mothering. Bradford, ON: Demeter Press.Google Scholar
  41. Vaidya, S. (2014). Lessons in disability: Acceptance and inclusion. Fortell (29):15–18 (Special Issue).Google Scholar
  42. Vaidya, S. (2015). Developmental disability and the family: Autism spectrum disorder in urban India. In A. Hans (Ed.), Disability, gender and the trajectories of power. New Delhi: Sage Publications.Google Scholar
  43. Whyte, S. R. (1998). Slow cookers and madmen: Competence of heart and head in rural Uganda. In R. Jenkins (Ed.), Questions of competence: Culture, classification and intellectual disability. Cambridge, UK: Cambridge University Press.Google Scholar
  44. Wolfensberger, W. (1972). The principle of normalisation in human services. Toronto: National Institute on Mental Retardation.Google Scholar

Copyright information

© Springer India 2016

Authors and Affiliations

  1. 1.School of Interdisciplinary and Trans-Disciplinary Studies (SOITS) IGNOUNew DelhiIndia

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