In this article we examine the construction of self following acquired brain injury from an experience-centered perspective. Life history and semistructured interview transcripts collected from four brain injury survivors were analyzed using thematic, syntactic, and deep structure analysis. Though notions of the “lost” or “shattered” self have dominated discussions of personhood in the acquired brain injury literature, we argue that this perspective is a crude representation of the postinjury experience of self, and that aspects of stability, recovery, transcendence, and moral growth are also involved in this process. We highlight the intersubjective nature of the self, and present the processes of delegitimation, invalidation, negotiation, and resistance as crucial aspects of the postinjury construction of personhood. We explore the implications of this complex process of construction of self for grief and bereavement theories, clinical practice, and professional discourse in the area of acquired brain injury.
Balfe, M. ( 2008). The body projects of university students with type 1 diabetes. Qualitative Health Research, 19, 128-139. doi:10.1177/1049732308328052
2.
Becker, G. ( 1999). Disrupted lives: How people create meaning in a chaotic world. Los Angeles: University of California Press.
3.
Bogdan, R., & Taylor, S. ( 1982). Inside out: The social meaning of mental retardation . Toronto, Ontario, Canada: University of Toronto Press.
4.
Brody, H. ( 1987). Stories of sickness. London: Yale University Press.
5.
Brown, D., Lyons, E., & Rose, D. ( 2006). Recovery from brain injury: Finding the missing bits of the puzzle. Brain Injury, 20(9), 937-946. doi:10.1080/02699050600909821
6.
Bruner, E. ( 1986). Experience and its expressions. In V. Turner & E. Bruner (Eds.), The anthropology of experience (pp. 3-29). Urbana, IL: University of Illinois Press.
7.
Cantor, J., Ashman, T., Schwartz, M., Gordon, W., Hibbard, M., Brown, M., . . . Cheng, Z. ( 2005). The role of self-discrepancy theory in understanding post-traumatic brain injury affective disorders: A pilot study. Journal of Head Trauma Rehabilitation, 20(6), 527-543. Retrieved from http://ovidsp.uk.ovid .com
8.
Carlsson, E., Paterson, B., Scott-Findlay, S., Ehnfors, M., & Ehrenberg, A. ( 2007). Methodological issues in interviews involving people with communication impairments after acquired brain damage. Qualitative Health Research, 17, 1361-1371. doi:10.1177/1049732307306926
9.
Cassirer, E. ( 1946). Language and myth. New York: Rover.
10.
Chamberlain, D. ( 2006). The experience of surviving traumatic brain injury. Journal of Advanced Nursing, 54(4), 407-417. doi:10.1111/j.1365-2648.2006.03840.x
11.
Crisp, R. ( 1993). Personal responses to traumatic brain injury: A qualitative inquiry. Disability, Handicap, and Society, 8(4), 393-404. Retrieved from http://search.ebscohost.com
12.
Daniel, V. ( 1984). Fluid signs: Being a person the Tamil way. Berkeley, CA: University of California Press.
13.
Desjardins, M. ( 2001). La construction anthropologique des problèmes sociaux: L’exemple de la déficience intellectuelle [The anthropological construction of social problems: The case of intellectual disability]. In H. Dorvil & R. Mayer (Eds.), Problèmes sociaux: Tome I (pp. 176-190). Sainte-Foy, Québec, Canada: Presses de l’Université du Québec.
14.
Desjardins, M. ( 2002). Le jardin d’ombres. La poétique et la politique de la rééducation sociale [The garden of shadows. The poetics and politics of social reeducation]. Sainte-Foy, Québec , Canada: Presses de l’Université du Québec .
15.
Devlieger, P. ( 1995). Why disabled? The cultural understanding of physical disability in an African society. In B. Ingstad and S. Whyte (Eds.), Disability and culture (pp. 94-107). Berkeley, CA: University of California Press.
16.
Edgerton, R.B. ( 1967). The cloak of competence: Stigma in the lives of the mentally retarded. Berkeley, CA: University of California Press.
17.
Edgerton, R.B. ( 1986). A case of delabeling: Some practical and theoretical implications. In L. L. Langness & H. G. Levine (Eds.), Culture and retardation: Life histories of mildly mentally retarded persons in American society (pp. 101-126). Dordrecht, South Holland, Netherlands: D. Reidel.
18.
Erikson, E.H. ( 1956). The problem of ego-identity. Journal of the American Psychoanalytic Association, 4, 56-121.
19.
Feinberg, T., & Keenan, J. ( 2005). The lost self: Pathologies of the brain and identity . New York: Oxford University Press .
20.
Garro, L. ( 1992). Chronic illness and the construction of narratives. In M. J. DelVecchio Good (Ed.), Pain as human experience: An anthropological perspective (pp. 100-137). Berkeley, CA: University of California Press.
21.
Geertz, C. ( 1973). The interpretation of cultures. New York: Basic Books.
22.
Goffman, E. ( 1961). Asylums: Essays on the social situation of mental patients and other inmates. New York: Anchor Books.
23.
Goffman, E. ( 1963). Stigma: Notes on the management of spoiled identity. New York: Simon & Schuster.
24.
Good, B. ( 1994). Medicine, rationality, and experience: An anthropological perspective. New York: Cambridge University Press.
25.
Jackson, H., & Manchester, D. (2001). Towards the development of brain injury specialists. NeuroRehabilitation, 16, 27-40.
26.
Kleinman, A. ( 1988). The illness narratives: Suffering, healing, and the human condition. New York: Basic Books .
27.
Kleinman, A. ( 1995). Writing at the margin: Discourse between anthropology and medicine. Berkeley, CA: University of California Press.
28.
Klinger, L. ( 2005). Occupational adaptation: Perspectives of people with traumatic brain injury. Journal of Occupational Science, 12(1), 9-16.
29.
Landau, J., & Hissett, J. ( 2008). Mild traumatic brain injury: Impact on identity and ambiguous loss in the family. Family, Systems, and Health, 26(1), 69-85. doi:10.1037/1091-7527.26.1.69
30.
Leenhardt, M. ( 1979). Do kamo: Person and myth in the Melanesian world. Chicago: University of Chicago Press.
31.
Lefebvre, H., & Levert, M.J. ( 2006). Sudden and unexpected health situation: From suffering to resilience. Illness, Crisis, & Loss, 14(4), 337-354.
32.
Legros, R. ( 2005). La naissance de l’individu modern [The birth of the modern individual]. In B. Foccroulle, R. Legros, & T. Todorov (Eds.), La naissance de l’individu dans l’art [The birth of the individual in arts] (pp. 121-200). Paris: Éditions Grasset & Fasquelle.
33.
Lloyd, V., Gatherer, A., & Kalsy, S. ( 2006). Conducting qualitative interview research with people with expressive language difficulties. Qualitative Health Research, 16, 1386-1404. doi:10.1177/1049732306293846
34.
Mattingly, C. ( 1998). Healing dramas and clinical plots: The narrative structure of experience. Cambridge, UK: Cambridge University Press.
35.
Mauss, M. ( 1979). Sociology and psychology. London: Routledge and K. Paul.
36.
McGowing, D.F. ( 1993). Living in the labyrinth: A personal journey through the maze of Alzheimer’s. San Francisco: Elder Books.
37.
Mead, G.H. ( 1934). Mind, self, and society. Chicago: University of Chicago Press.
38.
Medved, M., & Brockmeier, J. (2008). Continuity amid chaos: Neurotrauma, loss of memory, and sense of self. Qualitative Health Research, 18, 469-479. doi:10.1177/1049732308315731
39.
Mehan, H. ( 1988). Educational handicap as a cultural meaning system. Ethos, 16(1), 73-91. doi:10.1525/eth.1988.16.1.02a00040
40.
Miller, L. ( 1993). Psychotherapy of the brain-injured patient: Reclaiming the shattered self. New York: W. W. Norton.
41.
Moldover, J., Golberg, K., & Prout, M. ( 2004). Depression after traumatic brain injury: A review of evidence for heterogeneity. Neuropsychology Review, 14, 143-154. doi:10.1023/ B:NERV.0000048181.46159.61
42.
Morse, J., & O’Brien, B. (1995). Preserving the self: From victim, to patient, to disabled person. Journal of Advanced Nursing, 31, 886-896. doi:10.1111/j.1365-2648.1995.tb02788.x
43.
Munck, V. ( 2000). Culture, self, and meaning. Prospect Heights, IL: Waveland.
44.
Murphy, R.F. ( 1990). The body silent. The different world of the disabled . New York: W. W. Norton.
45.
Myles, S. ( 2004). Understanding and treating loss of sense of self following brain injury: A behaviour analytic approach. International Journal of Psychology and Psychological Therapy, 4(3), 487-504. Retrieved from http://www.ijpsy.com/volumen4/num3/96.html
46.
Nochi, M. ( 1997). Dealing with the ‘void’: Traumatic brain injury as a story. Disability and Society, 12(4), 533-555. doi:10.1080/09687599727119
47.
Nochi, M. ( 1998a). "Loss of self" in the narratives of people with traumatic brain injuries: A qualitative analysis. Social Science Medicine , 46(7), 869-878. doi:10.1016/S0277 9536(97)00211-6
48.
Nochi, M. ( 1998b). Struggling with the labeled self: People with traumatic brain injuries in social settings. Qualitative Health Research , 8, 665-681. doi:10.1177/104973239800800507
49.
Richards, R. ( 2008). Writing the othered self: Autoethnography and the problem of objectification in writing about illness and disability. Qualitative Health Research, 18, 1717-1728. doi:10.1177/1049732308325866
50.
Rosaldo, M. ( 1984). Toward an anthropology of self and feeling. In R. Shweder & R. Levine (Eds.), Culture theory: Essays on mind, self, and emotion (pp.137-157). Cambridge, UK: Cambridge University Press.
51.
Rosenberg, M., & Kaplan, H. ( 1982). Social psychology of the self-concept. Arlington Heights, IL: Harlan Davidson.
52.
Rothe, J.P. ( 2000). Undertaking qualitative research: Concepts and cases in injury, health and social life. Edmonton, AB, Canada: University of Alberta Press
53.
Rowitz, L. ( 1981). A sociological perspective on labelling in mental retardation . Mental Retardation, 19(2), 47-51. Retrieved from http://www.mnddc.org/parallels2/pdf/81-MRN-AMD.pdf
54.
Sacks, O. ( 1985). The man who mistook his wife for a hat. New York: Summit Books.
55.
Shweder, R. ( 1991). Thinking through cultures: Expeditions in cultural psychology . Cambridge, MA: Harvard University Press.
56.
Shweder, R. ( 2003). Why do men barbecue? Recipes for cultural psychology . Cambridge, MA: Harvard University Press.
57.
Shweder, R., & Bourne, E. ( 1984). Does the concept of the person vary cross-culturally? In R. Shweder & R. Levine (Eds.), Culture theory: Essays on mind, self, and emotion (pp.158-199). Cambridge, UK: Cambridge University Press.
58.
Singer, M. ( 1984). Man’s glassy essence: Explorations in semiotic anthropology. Bloomington, IN: Indiana University Press.
59.
Speraw, S. ( 2009). "Talk to me I’m human": The story of a girl, her personhood, and the failures of health care. Qualitative Health Research, 19, 732-743. doi:10.1177/1049732309334517
60.
Stiker, H.J. ( 2000). Pour le débat dèmocratique: La question du handicap [For a democratic debate: The issue of disability]. Paris: Editions du CTNERHI.
61.
Stiker, H.J. ( 2006). Democracy. In G. Albrecht (Ed.), The encyclopedia of disability (pp. 380-383). London: Sage.
62.
Talle, A. ( 1995). A child is a child: Disability and equality among the Kenya Maasai. In B. Ingstad & S. Whyte (Eds.), Disability and culture (pp. 56-73). Berkeley, CA: University of California Press.
63.
Tappen, R., Williams, C., Fishman, S., & Touhy, T. ( 1999). Persistence of self in advanced Alzheimer’s disease . Journal of Nursing Scholarship, 31, 121-125.
64.
Taylor, C. ( 2004). Modern social imaginaries. London : Duke University Press.
65.
Whyte, S. ( 1995). Disability between discourse and experience. In B. Ingstad & S. Whyte (Eds.), Disability and culture (pp. 267-291). Berkeley, CA: University of California Press.
66.
Whyte, S., & Ingstad, B. ( 1995). Disability and culture: An overview. In B. Ingstad & S. Whyte (Eds.), Disability and culture (pp. 3-35). Berkeley, CA: University of California Press.
67.
Wongvatunyu, S., & Porter, E.J. ( 2008). Helping young adult children with traumatic brain injury: The life-world of mothers. Qualitative Health Research, 18, 1062-1075. doi:10.1177/1049732308320111
68.
Zola, I. ( 1982). Missing pieces: A chronicle of living with disability . Philadelphia: Temple University Press.
