Personal tragedy, collective victims or something else Understanding disability and chronic illness

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Personal tragedy, collective victims or
something else? Understanding disability and
chronic illness

• Nadine Krejci
• Masters by Research
• in Sexuality, Health Culture

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Presentation outline

• Introduce two models of disability and chronic
  illness
• Individual
• Social
• Critique of the social model
• Propose a different way of thinking about
  disability and chronic illness

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Disclaimer

• An extremely condensed version of discussion /
  debate that has taken place over two (almost
  three) decades
• Based on the conceptual framework for my MA
  thesis project re understanding the employment
  experiences of people living with chronic hep C

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How is disability defined? WHO (1980)

• Impairment Any loss or abnormality of
  psychological, physiological or anatomical
  structure or function (p.27)
• Disability Any restriction or lack (resulting
  from an impairment) of ability to perform an
  activity in the manner or within the range
  considered normal for a human being (p.28)
• Handicap A disadvantage for a given individual,
  resulting from an impairment or disability, that
  limits or prevents the fulfilment of a role
  (depending on age, sex, social and cultural
  factors) for that individual (p.29)
• (my emphasis)

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How is disability defined? UPIAS (1976)

• Impairment Lacking part or all of a limb, or
  having a defective limb, organism or mechanism of
  the body
• Disability The disadvantage or restriction of
  activity caused by a contemporary social
  organisation which takes no or little account of
  people who have physical impairments and thus
  excludes them from participation in the
  mainstream of social activities (pp.3-4)

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The two models

• Individual
• Disability is the result of impairment
• Disability is something a person has
• People with a disability

• Social
• Disability is the result of oppression
• Disability is something that is done to a person
• Disabled people

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Priestleys (1998) four approaches (p.78)
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The two models contd

• Individual (medical)
• Biological
• Impairment
• The body
• Medicine
• Therapy
• Pain

• Social
• Social
• Disability
• Society
• Politics
• Emancipation
• Oppression
• Hughes and Paterson (1997)

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Critique of the social model

• Central distinction of social model impairment
  / disability has become its weakness
• Simplistic, over-socialised explanation
• Does not work well as explanation at personal
  level
• Where do rights fit in?

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Sociology of health and illness

• Post-structuralism
• Impairment is the product of a particular
  discursive practice (bio-medicine)
• Discursive essentialism replaces biological
  determinism

• Phenomenology
• Disability is experienced through an impaired
  body or mind
• Can become highly personalised, separated from
  politics and history

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The usual way of thinking either / or

• Treated as discrete entities
• impairment, or
• experience, or
• language, or
• barriers
• but they are inextricably interconnected and
  mutually constitutive

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A different way of thinking Bodies, selves and
society

• three bodies (Scheper-Hughes and Lock, 1987)
• individual body-self lived experience
• social body representational uses of the body
• body politic regulation, surveillance,
  control of individual and collective bodies
• Irving Zola (social scientist and activist)
  retained phenomenological and interactionist
  analysis of disability within a collectivist
  framework

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• "Disability is the quintessential post-modern
  concept, because it is so complex, so variable,
  so contingent, so situated. It sits at the
  intersection of biology and society and of agency
  and structure. Disability cannot be reduced to a
  singular identity it is a multiplicity, a
  plurality (Shakespeare 2002, p. 19)

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References

• Finkelstein, V. (2001, 1st December). The social
  model of disability repossessed. Paper presented
  at the Manchester Coalition of Disabled People.
• Gabel, S., Peters, S. (2004). Presage of a
  paradigm shift? Beyond the social model of
  disability toward resistance theories of
  disability. Disability Society, 19(6), 585-600.
• Hughes, B., Paterson, K. (1997). The social
  model of disability and the disappearing body
  Towards a sociology of impairment. Disability
  Society, 12(3), 325-340.
• Oliver, M. (1990, 23rd July). The individual and
  social models of disability. Paper presented at
  the Joint Workshop of the Living Options Group
  and the Research Unit of the Royal College of
  Physicians on People with Established Locomotor
  Disabilities in Hospitals.
• Pinder, R. (1999). Zones of danger, zones of
  safety Disabled people's negotiations around
  sickness and the sick record. In N. Daykin L.
  Doyal (Eds.), Health and work Critical
  perspectives (pp. 161-179). New York St Martin's
  Press.
• Pinder, R. (1996). Sick-but-fit or fit-but-sick?
  Ambiguity and identity at the workplace. In C.
  Barnes G. Mercer (Eds.), Exploring the Divide
  Illness and Disability (pp. 135-156). Leeds The
  Disability Press.
• Pinder, R. (1995). Bringing back the body without
  the blame? The experience of ill and disabled
  people at work. Sociology of Health and Illness,
  17(5), 605-631.
• Priestley, M. (1998). Constructions and
  creations Idealism, materialism and disability
  theory. Disability Society, 13(1), 75-94.
• Shakespeare, T., Watson, N. (2002). The social
  model of disability An outmoded ideology?
  Research in Social Science and Disability, 2,
  9-28.
• Shakespeare, T., Watson, N. (2002). The social
  model of disability An outmoded ideology?
  Research in Social Science and Disability, 2,
  9-28.
• Williams, G. (1996). Representing disability
  Some questions of phenomenology and politics. In
  C. Barnes G. Mercer (Eds.), Exploring the
  divide Illness and disability (pp. 194-212).
  Leeds The Disability Press.

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Thesis project details

• Getting on with it? Understanding the
  employment experiences of people living with
  chronic hepatitis C (in the Hunter region)
• Supervised by Dr Carla Treloar (NCHSR) and Tony
  Eardley (SPRC)
• With an MA scholarship through the Consortium for
  Social and Policy Research on HIV, Hepatitis C
  and Related Diseases
• nadine.krejci_at_student.unsw.edu.au