Social Theory & Health

, Volume 9, Issue 2, pp 130–146 | Cite as

Capital transactions, disruptions and the emergence of personal capital in a lifeworld under attack

  • Sasha Scambler
  • Paul Newton
Original Article


Focusing on the experiences of parents caring for their children with Batten disease this article gives an overview of Batten disease as an exemplar of a long-term disabling, degenerative condition characterised by an omnipresence of biological pathology and consequence – represented, adumbrated and organised primarily through biomedical expertise. The utility of Bourdieu's concepts of field, capital and habitus is explicated and illustrated using data from an in-depth qualitative study on Batten disease. Through applying Bourdieusian constructs, we argue that it is possible to heuristically describe a Batten field militated by the biology, with forms of capital that accord to, and represent, biomedical interest and expertise. However, we illustrate a new form of capital that develops – personal capital – borne from systematic exclusion from existing forms of capital, and the sequestration of available capital in the field by expert systems that leave parents with an acutely aware, reflexive stance rooted in responding to ‘everyday’ lifeworld. This acts as a sounding board producing new personal systems of valuation seen here as ‘personal capital’. This personal capital allows the person to reject, harness, filter and ‘trans-value’ other forms of capital in light of their immediate circumstances, and personal pursuits in the lifeworld.


Batten disease Bourdieu capital personal capital parents reflexivity 


  1. Adams, M. (2006) Hybridizing habitus and reflexivity: Towards an understanding of contemporary identity? Sociology 40 (3): 511–528.CrossRefGoogle Scholar
  2. Archer, M.S. (2002) Realism and the problem of agency. Journal of Critical Realism 5 (1): 11–20.Google Scholar
  3. Baxter, C. (1989) Parent-perceived attitudes of professionals: Implications for service providers. Disability, Handicap and Society 4 (3): 259–269.CrossRefGoogle Scholar
  4. Bourdieu, P. (1990) The Logic of Practice. Cambridge, UK: Polity Press.Google Scholar
  5. Bourdieu, P. (1999) The Weight of the World: Social Suffering in Contemporary Society. Cambridge, UK: Polity Press.Google Scholar
  6. Brett, J. (2002) The experience of disability from the perspective of parents of children with profound impairment: Is it time for an alternative model of disability? disability & society 17 (7): 825–843.CrossRefGoogle Scholar
  7. Brown, S. (1998) The orchestrated body: An anthropology of embodiment and experience in brain injured children. PhD thesis, University of Edinburgh.Google Scholar
  8. Case, S. (2000) Refocusing on the parent: Social issues for parents of disabled children. disability & society 15 (2): 271–292.CrossRefGoogle Scholar
  9. Cocks, A. (2000) Respite care for disabled children: Macro and micro reflections. disability & society 13: 507–519.CrossRefGoogle Scholar
  10. Dowling, M. and Dolan, L. (2001) Families with children with disabilities – Inequalities and the social model. disability & society 16 (1): 21–35.CrossRefGoogle Scholar
  11. Dowse, L. (2001) Contesting practices, challenging codes: Self-advocacy, disability politics and the social model. disability & society 16: 123–141.CrossRefGoogle Scholar
  12. Farrugia, D. (2009) Exploring stigma: Medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorders. Sociology of Health & Illness 31 (7): 1–17.CrossRefGoogle Scholar
  13. Forbes, A. and Wainwright, S. (2001) On the methodological, theoretical and philosophical context of health inequalities research: A critique. Social Science and Medicine 53: 801–816.CrossRefGoogle Scholar
  14. Giddens, A. (2005) Modernity and Self-identity: Self and Society in the Modern Age. Cambridge, UK: Polity Press.Google Scholar
  15. Global Organisation of Lysosomal Diseases. (2008) Disease Information,, accessed March 2009.
  16. Goode, D. (1994) A World without Words: The Social Construction of Children Born Deaf and Blind. Philadelphia, PA: Temple University Press.Google Scholar
  17. Higginson, I. (2003) Priorities for End of Life Care in England, Wales and Scotland. London: National Council for Palliative Care.Google Scholar
  18. Hofmann, SL. and Peltonen, L. (2001) The neuronal ceroid lipofuscinoses. In: C.R. Scriver, A.L. Beaudet, W.S. Sly, B. Childs, and B. Vogelstein (eds.), The Metabolic and Molecular Bases of Inherited Disease, 8th edn. New York: McGraw-Hill, pp. 3877–3894.Google Scholar
  19. Kelly, S.E. (2009) Choosing not to choose: Reproductive responses of parents if children with genetic conditions or impairments. Sociology of Health & Illness 31 (1): 81–97.CrossRefGoogle Scholar
  20. Labbe, E.E. (1996) Emotional states and perceived family functioning of caregivers of chronically ill children. Psychology Report 79 (3, part 2): 1233–1234.CrossRefGoogle Scholar
  21. Layder, D. (1994) Understanding Social Theory. London: Sage.Google Scholar
  22. Lock, S., Jordan, L., Bryan, K. and Maxim, J. (2005) Work after stroke: Focusing on barriers and enablers. disability & society 20 (1): 33–47.CrossRefGoogle Scholar
  23. McKeever, P. and Miller, K. (2004) Mothering children who have disabilities: A Bourdieusian interpretation of maternal practices. Social Science and Medicine 59: 1177–1191.CrossRefGoogle Scholar
  24. Murray, P. (2000) Disabled children, parents and professionals: Partnership on whose terms? disability & society 15 (4): 683–698.CrossRefGoogle Scholar
  25. Scambler, G. (2009) Health related stigma, a review article. Sociology of Health & Illness 31 (3): 441–455.CrossRefGoogle Scholar
  26. Scambler, S. (2005) Exposing the limitations of disability theory: The case of juvenile Batten disease. Social Theory and Health 3: 144–164.CrossRefGoogle Scholar
  27. Scambler, S. and Newton, P. (2010) Where the biological predominates: Habitus, reflexivity and capital accrual within the field of Batten Disease. In: G. Scambler and S. Scambler (eds.) New Directions in the Sociology of Chronic and Disabling Conditions: Assaults on the Lifeworld. Basingstoke: Palgrave Macmillan.CrossRefGoogle Scholar
  28. Scambler, S. and Williams, R. (2008) Support Needs of Families with Batten Disease: Research Report. Hampshire, UK: Batten Disease Family Association.Google Scholar
  29. Scriver, C.R., Beaudet, A.L., Sly, W.S., Childs, B. and Vogelstein, B. (eds.) (2001) The Neuronal Ceroid Lipofuscinoses. New York: McGraw-Hill.Google Scholar
  30. Shakespeare, T. (1999) Losing the plot? Discourses on genetics and disability. Sociology of Health & Illness 21 (5): 669–688.CrossRefGoogle Scholar
  31. Siintola, E., Lehesjoki, A.-E. and Mole, S.E. (2006) Molecular genetics of the NCLs – Status and perspectives. Biochimica et Biophysica Acta 1762 (2006): 857–864.CrossRefGoogle Scholar
  32. Spiegle, J.A. and van de Pol, R.A. (1993) Making Changes: Family Voices on Living with Disabilities. Cambridge, MA: Brookline books.Google Scholar
  33. Vaitkus, S. (2000) Phenomenology and sociology. In: B.S. Turner (eds.) The Blackwell Companion to Social Theory. Oxford: Blackwell.Google Scholar
  34. Williams, S.J. (1995) Theorising, class, health and lifestyles: Can Bourdieu help us? Sociology of Health & Illness 52 (5): 577–604.CrossRefGoogle Scholar
  35. Williams, S.J. (1999) Is anybody there? Critical realism, chronic illness and the disability debate. Sociology of Health & Illness 21 (6): 797–819.CrossRefGoogle Scholar

Copyright information

© Palgrave Macmillan, a division of Macmillan Publishers Ltd 2011

Authors and Affiliations

  • Sasha Scambler
    • 1
  • Paul Newton
    • 2
  1. 1.Unit of Social and Behavioural Sciences, King's College LondonLondonUK
  2. 2.School of Health and Social Care, University of Greenwich, Avery Hill CampusLondon

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