Making a difference: how disability research can change our world

Tom Shakespeare University of Sydney

Outline

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 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

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?

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

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

Models of disability (if you must)

Individual or Medical Model 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 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

and Structures

(impairment)

Activity

(activity limitation)Participation

(participation restriction)

Environmental

Factors

Personal Factors

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

Disability as an interaction

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

Methodologies

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/online.html

(2006) Disabled people and direct payments: UK comparative study www.leeds.ac.uk/disability-studies/projects/UKdirectpayments/index.htm

(2007) Quality of life in restricted growth (Newcastle)www.restrictedgrowth.co.uk

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

Different journals, different approaches

Disability and Society Disability Studies Quarterly Scandinavian Journal of Disability

Research Alter Journal of Literary Disability

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

Entia non sunt multiplicanda sine necessitate

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

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.