Transcript Making a difference: how disability research can change our world

Making a difference:
how disability research can
change our world
Tom Shakespeare
University of Sydney
Outline
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The emergence of Disability Studies
What should disability research look
like?
World report on disability
Research priorities
Academia versus activism
Origins of disability studies
Tradition of medical research
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Criticised as individualising, pathological
Non-disabled experts researching on disabled
people
Resistance and rejection from disability
activists
Emerging academic discipline
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Roots in disability politics
Rejection of research on ‘experience’
Focus on structural issues (public private split)
Emancipatory research
Research which changed Britain
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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?
Disability studies claims
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Disability is a social and political
issue, not simply a medical or
rehabilitation issue
Disability is an issue of identity:
“nothing about us without us”
People are disabled by society, not
by their bodies
Examples of research traditions
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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
Models of disability (if you must)
Individual or
Medical Model
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Focus is on the clinical
diagnosis
Focus is on what
someone can’t do
Sees the person as the
problem that needs to be
fixed or cured
Medical, psychological,
rehabilitation as answer
Structural or
Social Model
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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
Components of ICF
Health condition
(disorder or disease)
Body Functions
Activity
Participation
and Structures
(activity limitation)
(participation
restriction)
(impairment)
Environmental
Factors
Personal
Factors
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
Methodologies
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Qualitative social research: gathering
disabled people’s 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
Examples of UK research
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(2003) Rolling through the 20th century: a sociotechnical history of the wheelchair (Edinburgh, York)
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(2005) Secret love, hidden lives? (Norah Fry Centre,
Bristol)
www.bristol.ac.uk/norahfry/online.html
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(2006) Disabled people and direct payments: UK
comparative study www.leeds.ac.uk/disabilitystudies/projects/UKdirectpayments/index.htm
(2007) Quality of life in restricted growth
(Newcastle)
www.restrictedgrowth.co.uk
Teaching programmes
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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
Different journals, different
approaches
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Disability and Society
Disability Studies Quarterly
Scandinavian Journal of Disability
Research
Alter
Journal of Literary Disability
World report on disability
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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
Entia non
sunt
multiplicanda
sine
necessitate
Priorities
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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, costbenefit of interventions
Academia vs activism
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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.