The ‘locked door’ of The ‘locked door’ of neurological rehabilitation: neurological rehabilitation:

using life histories to using life histories to capture the complexity of capture the complexity of

rehabilitation following rehabilitation following acquired brain injuryacquired brain injury

Jonathan HarveyJonathan Harvey

The Open UniversityThe Open University

jonathan.harvey@open.ac.ukjonathan.harvey@open.ac.uk

FormatFormat

►Part auto/biographicalPart auto/biographical►Part ethnographicPart ethnographic►Semi-structured interviewsSemi-structured interviews►Traumatic brain injury (TBI) and Stroke Traumatic brain injury (TBI) and Stroke

survivorssurvivors

Sudden onset neurological Sudden onset neurological ‘injuries’‘injuries’

►Acquired brain injury, spinal cord Acquired brain injury, spinal cord injury etc.injury etc.

►NOT progressive neurological NOT progressive neurological pathologies such as MS, motor pathologies such as MS, motor neurone disease, dementia etc.neurone disease, dementia etc.

Life historiesLife histories

►Semi-structured interviewsSemi-structured interviews►Long-term focusLong-term focus►Voluntary organisationsVoluntary organisations►VolunteeringVolunteering

- seen as an ‘ally’- seen as an ‘ally’

- enables assessment of capacity- enables assessment of capacity

Doors as Barriers for disabled Doors as Barriers for disabled peoplepeople

►Not just abstract.Not just abstract.►Locked doors are found throughout Locked doors are found throughout

neuro-rehab units.neuro-rehab units.►Represent and reinforce limits of Represent and reinforce limits of

disabled bodies disabled bodies (Barton and Oliver 1997; Barnes, Mercer (Barton and Oliver 1997; Barnes, Mercer and Shakespeare 1999; Tregaskis 2001; or many other social model and Shakespeare 1999; Tregaskis 2001; or many other social model accounts)accounts)

-Medical gaze-Medical gaze

-Us versus them-Us versus them

Analysis – ‘Emancipation’Analysis – ‘Emancipation’

►Much disability research driven by Much disability research driven by need to be ‘emancipatory’ (Barnes need to be ‘emancipatory’ (Barnes 2002;2003)2002;2003)

►Who the hell am I?Who the hell am I?

Analysis - ‘biopower’?Analysis - ‘biopower’?

►Constantly under observation of Constantly under observation of medical ‘experts’.medical ‘experts’.

►Activity restricted, monitored and Activity restricted, monitored and reviewed reviewed by others.by others.

► ‘‘the acts, behaviours, and practises that emerge as the acts, behaviours, and practises that emerge as “problematizations” [such as disability] within certain networks of “problematizations” [such as disability] within certain networks of knowledge are dynamically linked to forms of power that turn knowledge are dynamically linked to forms of power that turn individuals into subjects by tying them to identities’ (Tremain 2005: individuals into subjects by tying them to identities’ (Tremain 2005: 14)14)

►Can this surveillance be escaped?Can this surveillance be escaped?►Does this underestimate disabled Does this underestimate disabled

people?people? (Davis 2010; Hughes 2005; 2007)(Davis 2010; Hughes 2005; 2007)

Analysis - FluidityAnalysis - Fluidity

►Remain open to engage with dataRemain open to engage with data

►Growth and change Growth and change (Deleuze and Guattari (Deleuze and Guattari 1987/2004)1987/2004)

- - Rhizome Rhizome

►Nomadism Nomadism (Braidotti 1991; 2003; 2006; 2011)(Braidotti 1991; 2003; 2006; 2011)

- Figurative - fluidity- Figurative - fluidity

Is the locked door of Is the locked door of neurological rehabilitation neurological rehabilitation

escapable?escapable?►Fluidity could help to escape Fluidity could help to escape

negative conceptualisationnegative conceptualisation►Time – future destiny?Time – future destiny?►Community rehabilitationCommunity rehabilitation►Social re-integrationSocial re-integration►Extent of professional gazeExtent of professional gaze►Individual choice!!!!!!!!!!!!!!!!!!!Individual choice!!!!!!!!!!!!!!!!!!!

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‘Disability Studies: Past, Present and Future’ Leeds, The Disability Press. ‘Disability Studies: Past, Present and Future’ Leeds, The Disability Press. ► Barnes,C (2002) ‘Emancipatory disability research: project or process?’ Barnes,C (2002) ‘Emancipatory disability research: project or process?’ Journal of Research in Journal of Research in

Special Educational NeedsSpecial Educational Needs 2 (1), 1-13. 2 (1), 1-13.► Barnes,C (2003) ‘What a difference a decade makes: reflections on doing emancipatory disability Barnes,C (2003) ‘What a difference a decade makes: reflections on doing emancipatory disability

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► Hughes,B (2005) ‘What Can a Foucauldian Analysis Contribute to Disibility Theory?’ in Tremain,S Hughes,B (2005) ‘What Can a Foucauldian Analysis Contribute to Disibility Theory?’ in Tremain,S ‘Foucault and the Government of Disability’‘Foucault and the Government of Disability’ University of Michigan, University of Michigan Press. University of Michigan, University of Michigan Press.

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