Abstract
In 1963, Erving Goffman was one of the first scholars in the world to identify the concept of identity as it relates to disability. In his Stigma: Notes on the Management of Spoiled Identity, Goffman theorized that persons with disability often have “spoiled” identity formation related to the construction of disability stigma and the negative social impact of overt physical, sensory, and cognitive differences. He focuses on the relationship between an individual who has potentially stigmatizing conditions and the agents of social control, such as people in the community, who define stigma in their context. Friedson (1965) expanded Goffman’s stigma theory, specifically in terms of the field of rehabilitation. Research on disability and identity has since considered a wider range of possibilities. Rosalyn Benjamin Darling published her 2013 book, Disability and Identity: Negotiating Self in a Changing Society. In conducting research for this book, Darling found that there is a taxonomy of identities that may exist among persons with disabilities, including: (a) Resignation (passive focus on the challenges that are brought about by disability); (b) Normative typicality (a desire to hide disability and “pass” in the non-disabled world); (c) Personal activism (acceptance or pride for disability and orientation toward struggling for personal rights); (d) Affirmative activism (acceptance and pride for disability and orientation toward societal change and reform related to disability); and (e) Affirmative typicality (an acceptance of disability but the desire to live and work in mainstream environments).
In this chapter we then discuss the beginnings of a collaborative research project in India. The aim of the project is to better understand and characterize disability identity in India. We, as authors, came to this work from very different perspectives. Each of these perspectives informed the design and implementation of the study. In the pages that follow we describe how we came to our interests in this topic, what we hope to achieve, and the study’s preliminary findings. Through this project (and preliminary discussion in this chapter) we seek to place identity as a phenomenon that is highly contextualized through highlighting two national examples (India and US), thus reinforcing that identity intersects with a wide variety of contextual factors including (but not limited to) national context.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Addlakha, R. (2013). Body politics and disabled femininity: Perspectives of adolescent girls from Delhi. In R. Addlakha (Ed.), Disability studies in India. New Delhi: Routledge.
Antony, P. J. (2013). Segregation hurts: Voices of youth with disabilities and their families in India. Rotterdam: Sense Publishers.
Barnes, C., & Mercer, G. (2001). Disability culture: Assimilation or inclusion? In G. L. Albrecht, K. D. Seelman, & M. Bury (Eds.), Handbook of disability studies (pp. 515–524). Thousand Oaks: Sage.
Bhambani, M. (2003). Societal responses to women with disabilities in India. In A. Hans & A. Patri (Eds.), Women, disability and identity. New Delhi: Sage Publications.
Booth, T. (2000). Progress in Inclusive Education. Paper presented at “Meeting Diverse Educational Needs: Making Inclusion a Reality,” World Education Forum, Dakar, 26–28 April 2000.
Combs, A., Avila, D., & Purkey, W. (1979). Self-concept: Product and producer of experience. In D. Elkins (Ed.), Self concept sourcebook: Ideas and activities for building self-esteem. New Jersey: Growth Associates.
Cook, J. A. (2001). Sexuality and people with psychiatric disaibilities. SIECUS Report, 29(1), 20–25.
Darling, R. B. (2013). Disability and identity: Negotiating self in a changing society. Boulder: Lynne Rienner Publishers.
Epp, T. (2001). Disability: Discourse, experience and identity. Disability Studies Quarterly, 20(2), 134–144.
Fine, M., & Asch, A. (1988). Disability beyond stigma: Social interaction, discrimination, and activism. Journal of Social Issues, 44(1), 3–21.
Fleisher, D. Z., & Zames, F. (2001). The disability rights movement: From charity to confrontation. Philadelphia: Temple University Press.
Friedner, M. (2013). Identity formation and transnational discourse: Thinking beyond identity politics. In R. Addlakha (Ed.), Disability studies in India. New Delhi: Routledge.
Friedson, E. (1965). Disability as deviance. In M. B. Sussman (Ed.), Sociology and rehabilitation (pp. 71–99). Washington, DC: American Sociological Association.
Gabel, S. (2001). I wash my face with dirty water. Narratives of disability and pedagogy. Journal of Teacher Education, 52(1), 31–47.
Garland-Thomson, R. (2001). Seeing the disabled: Popular rhetorics of popular photography. In P. K. Longmore & L. Umanski (Eds.), The new disability history: American perspectives. New York: New York University Press.
Ghai, A. (2003). (Dis)embodied form: Issues of disabled women. New Delhi: Shakti Books.
Goffman, E. (1963). Stigma (pp. 1–40). Englewood Cliffs: Prentice-Hall.
Hershey, L. (2001) An interview with Dr. Anita Ghai, one of India’s advocates for rights of disabled women. Disability News (8), May–June.
Johnstone, C.J. (2004). Disability and identity: Personal constructions and formalized supports. Disability Studies Quarterly, 24 (4), http://www.dsq-sds.org/_articles_html/2004/fall/dsq_fall04_johnstone.html
Kayama, M., & Haight, W. (2014). Disability, culture and development: A case study of Japanese children at school. New York: Oxford University Press.
Lifchez, R., & Winslow, B. (1979). Design for independent living. New York: Whitney Library of Design.
Limaye, S (2013, April 16–17). Constructing disability as an identity: A study of Indian adolescents. Presented at 13th Annual Multiple Perspectives on Access, Inclusion, and Disability Annual Conference, Columbus.
Linton, S. (1998). Claiming disability. New York: New York University Press.
Minow, M. (1990). Making all the difference: Inclusion, exclusion, and American law. Ithaca: Cornell University Press.
Morris, J. (1991). Pride against prejudice. London: Women’s Press.
Murickan, J., & Kareparampil, G. (1995). Persons with disability in society. Trivendrum: Kerala Federation of the Blind.
Murphy, R. (1990). The body silent. New York: Holt.
Murugami, M. W. (2009). Disability and identity. Disability Studies Quarterly, 29, 4.
Raja, S., & Boyce, W. (2003). Standing on our own feet. In A. Hans & A. Patri (Eds.), Women, disability and identity. New Delhi: Sage Publications.
Rao, D., & Valencia-Garcia, D. (2013). Stigma across cultures. In P. W. Corrigan (Ed.), The stigma of disease and disability: Understanding causes and overcoming injustices (pp. 283–296). Washington, DC: American Psychological Association.
Riddell, S., Baron, S., & Wilson, A. (2001). The significance of the learning society for women and men with learning difficulties. Gender and Education, 13(1), 57–73.
Seale, J. K. (2001). The same but different: The use of the personal home page by adults with Down Syndrome as a tool for self-presentation. British Journal of Educational Technology, 32(3), 343–352.
Shahnasarian, M. (2001). Career rehabilitation: Integration of vocational rehabilitation and career development in the twenty first century. Career Development Quarterly, 49(3), 275–283.
Steinberg, L. (2011). Adolescence (9th ed.). New York: McGraw-Hill.
Stocker, S. S. (2001). Disability and identity: Overcoming perfectionism. Frontiers, 21(2), 154–173.
Szivos-Bach, S. E. (1993). Social comparisons, stigma and mainstreaming: The self esteem of young adults with mild mental handicap. Mental Handicap Research, 6(3), 217–236.
Ware, L. (2001). Writing, identity, and the other dare we do disability studies? Journal of Teacher Education, 52(2), 107–123.
Weinberg, N., & Sterritt, M. (1991). Disability and identity: A study of identity patterns in adolescents with hearing impairment. In M. Eisenberg & R. Glueckaut (Eds.), Empirical approaches to the psychosocial aspects of disability. New York: Springer.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2017 Springer International Publishing AG
About this chapter
Cite this chapter
Johnstone, C.J., Limaye, S., Kayama, M. (2017). Disability, Culture, and Identity in India and USA. In: Halder, S., Assaf, L. (eds) Inclusion, Disability and Culture. Inclusive Learning and Educational Equity, vol 3. Springer, Cham. https://doi.org/10.1007/978-3-319-55224-8_2
Download citation
DOI: https://doi.org/10.1007/978-3-319-55224-8_2
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-319-55223-1
Online ISBN: 978-3-319-55224-8
eBook Packages: EducationEducation (R0)