Making a difference: how disability research can change our world

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Making a difference how disability research can
change our world

• Tom Shakespeare
• University of Sydney

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Outline

• The emergence of Disability Studies
• What should disability research look like?
• World report on disability
• Research priorities
• Academia versus activism

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Origins of disability studies

• Tradition of medical research
• Criticised as individualising, pathological
• Non-disabled experts researching on disabled
  people
• Resistance and rejection from disability
  activists
• Emerging academic discipline
• Roots in disability politics
• Rejection of research on experience
• Focus on structural issues (public private split)
• Emancipatory research

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Research which changed Britain

• Colin Barnes' research for BCODP Disabled People
  in Britain and Discrimination, 1991.
• Mike Oliver and Gerry Zarb's research on direct
  payments.
• The Sexual Politics of Disability, 1996?

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Disability studies claims

1. Disability is a social and political issue, not
   simply a medical or rehabilitation issue
2. Disability is an issue of identity nothing
   about us without us
3. People are disabled by society, not by their
   bodies

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Examples of research traditions

• United Kingdom social model focus on barriers,
  public/private split, political engagement
• North America minority group focus, literary and
  cultural studies, academic discipline
• Nordic countries relational model, welfare
  evaluation, few disabled researchers

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Models of disability (if you must)

• Structural or
• Social Model
• Focus is on the context
• People are disabled by society, not by their
  bodies
• Discrimination, prejudice as the problem
• Barrier removal as the way forward

• Individual or
• Medical Model
• Focus is on the clinical diagnosis
• Focus is on what someone cant do
• Sees the person as the problem that needs to be
  fixed or cured
• Medical, psychological, rehabilitation as answer

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Components of ICF
Health condition (disorder or disease)
Body Functions and Structures (impairment)
Participation (participation restriction)
Environmental Factors
Personal Factors
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Disability as an interaction
Intrinsic factors Extrinsic factors
Type of impairment Physical environments
Severity of impairment Social arrangements
Motivation, attitude to impairment Expectations and roles
Self-esteem, confidence Cultural meanings,representations
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Methodologies

• Qualitative social research gathering disabled
  peoples voices and experiences
• Quantitative social research impact of
  impairment and illness economic situation
  attitudes experiences of violence etc
• Cultural research content analysis, cultural
  criticism, cultural theory
• Historical research
• Philosophical enquiry ethics, political theory,
  aesthetics etc

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Examples of UK research

• (2003) Rolling through the 20th century a
  socio-technical history of the wheelchair
  (Edinburgh, York)
• (2005) Secret love, hidden lives? (Norah Fry
  Centre, Bristol) www.bristol.ac.uk/norahfry/onlin
  e.html
• (2006) Disabled people and direct payments UK
  comparative study www.leeds.ac.uk/disability-studi
  es/projects/UKdirectpayments/index.htm
• (2007) Quality of life in restricted growth
  (Newcastle)
• www.restrictedgrowth.co.uk

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Teaching programmes

• should be multidisciplinary humanities,
  sciences, and social sciences.
• challenge view of disability as individual
  deficit remedied solely through medical
  intervention or rehabilitation should examine
  social, political, cultural, and economic
  factors.
• study national and international perspectives,
  policies, literature, culture, and history to
  place current ideas of disability within their
  broadest possible context.
• actively encourage participation by disabled
  students and faculty, and should ensure physical
  and intellectual access.
• make it a priority to have leadership positions
  held by disabled people, while welcoming
  contributions from anyone

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Different journals, different approaches

• Disability and Society
• Disability Studies Quarterly
• Scandinavian Journal of Disability Research
• Alter
• Journal of Literary Disability

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World report on disability

• Launched by WHO and World Bank at UN in 2011
• 380 different contributors from 70 countries
• Chapters on data, health, rehabilitation,
  assistance and support, enabling environments,
  education and employment
• Supporting implementation of Convention on Rights
  of Persons with Disabilities
• Found major gaps in research, particularly from
  low and middle income countries
• General recommendations, because evidence base
  did not exist

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Entia non sunt multiplicanda sine necessitate
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Priorities

• Improving the lives of disabled people, not just
  creating careers for disabled academics
• Empirical research, not just theory
• Based wherever possible on partnership with
  disabled people and their organizations
• Research in LMIC
• Take into account differences between disabled
  people
• Evaluation of what works
• Economic analysis cost-effectiveness,
  cost-benefit of interventions

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Academia vs activism

• Research is not activism by other means
• Emancipatory research can bring risks
• Responsibility to research participants, not to
  those who commission research
• Requirement of independence and integrity
• The duty of the researcher to ask the difficult
  questions and to find the best possible answers,
  even when the truth is inconvenient, challenging
  or unwelcome.