8. Disability research: breaking the mould

Introduction

Disabled people have always been involved in disability research in one way or another, but usually as passive subjects, not as active participants or researchers. Also, much of the research on disability and development has been led either by international non-governmental organisations or by nondisabled academics from the North. Sometimes they have worked with disabled people or disabled people's organisations (DPOs), but the latter have usually been involved in a secondary capacity. The Disability KaR Programme has actively challenged this traditional research paradigm and tried to model a different way of engaging in disability and development research. This it has done by building on existing work on emancipatory research, as well as Participatory Rural Appraisal (PRA) techniques.

This section outlines why this new approach is needed, its key characteristics and how it has been applied in various projects within the Disability KaR Programme. It also highlights two Disability KaR projects in which researching the research process itself was a key objective.

Why a new research model for disability and development?

Many funders are now demanding that disabled people be included as a condition for awarding disability project grants. In most cases what this has meant is that Northern-based organisations with the resources and knowledge to bid for such grants have developed research projects and then searched for Southern DPOs willing to become 'partners'. This downstream involvement can result in tokenism, with the research agenda being pre-set, the unequal power relationship between researcher and researched not being challenged and real control remaining in the hands of the intermediary organisation and/or professionals.

The Disability KaR Research gap analysis report (Ref. D1) assessed what kind of research process disabled people in the South preferred. It found that while DPOs were willing to work with outside groups, they wanted to assume a more central, lead role. The following observation from the Zambia Federation of the Disabled (ZAFOD) was fairly typical: 'DPOs should play a leading role in this research process with consultancy services from research institutions.' This is a clear restatement of David Werner's famous dictum about the proper relationship between disabled people and 'professionals', shown in the box below.

A novel research framework

The approach adopted by Disability KaR is based on an emancipatory research model. This begins by conceptualising disability in social-model terms as a form of oppression - people with impairments being disabled by a complex web of discrimination and social exclusion. The object of emancipatory research is to understand how this happens and discover ways to challenge it. The key to unlocking this process of transformation lies in the knowledge and life experience of disabled people themselves. This is why they need to take the lead at all stages of the research process.

An excellent example of this approach is provided by the research for the Disability KaR paper Data and statistics on disability in developing countries (Ref. D5), as well as the previous work upon which it was based. The latter was originally developed by the Norwegian Federation of Associations of Disabled People (FFO) and Southern Africa Federation of the Disabled (SAFOD), who brought in the Foundation for Scientific and Technical Research (SINTEF) in Norway to facilitate the process. The research that followed involved DPOs and their members at all stages.

Research linking disabled people in the North and South

Some of the Disability KaR research projects were identified in a fairly traditional manner as part of the initial contract with DFID. However, once the UK disability movement became more actively involved in the Programme there was a notable shift in emphasis. It began with consultation on research priorities with representatives of the disability movement from Europe, Africa and Asia. This engagement was continued at the Disability KaR Malawi roundtable. Participants, largely members of DPOs, formulated a research agenda and principles for how the work should be carried out and these in turn informed the projects which were subsequently commissioned. All were carried out within an emancipatory research framework, directly involved disabled people and were informed by the social model of disability. Furthermore they were implemented either by disabled researchers in the South or as North-South collaborative efforts involving DPOs and disabled researchers.

Disabled people empowering themselves through research - participatory rural appraisal (PRA) in Cambodia

The one project which did not conform strictly to the framework outlined above was Developing participatory rural appraisal approaches with disabled people (Ref. B3), undertaken by Disability Development Services Pursat (DDSP), a ongovernmental organisation in Pursat province, Cambodia. However, the demand for the research came from the recognition by DDSP that its participatory approach was not empowering disabled people in community assessment exercises. By bringing disabled people in at all stages of the PRA - planning, implementation, monitoring and evaluation - they were attempting to discover a more emancipatory way of doing research.

The results suggest that the experiment was extremely successful. One important outcome was to increase the self-confidence of the disabled people who took part. There was a corresponding increase in awareness among villagers of the fact that disabled people were capable of playing a meaningful role within the community.

For the DDSP staff it was a valuable learning experience. They all had worked extensively with disabled people, but this was the first time they had worked with them as colleagues. Doing this had effectively challenged the '…tendency for the staff to see themselves on top and providing for their clients, rather than partnering with them to help them achieve their own goals.' Although this is only a first tentative step in developing and working within a fully emancipatory research framework, it is a crucially important step to take.

Conclusions

There are no magic formulae for doing research. Within Disability KaR an attempt has been made to confront the existing relations of research production and begin to transform them. But this is a beginning and as such can claim only partial success. The inclusion of disabled people is but one potentially transforming element, but if it is the only point conceded then it will mask the fact that little in the research process has really changed. As Mike Oliver (a professor of disability studies) has said, '…it seems to me that [applied or action research approaches] are concerned to allow previously excluded groups to be included in the game as it is, whereas emancipatory strategies are concerned about both conceptualising and creating a different game, where no one is excluded in the first place.' (Mike Oliver, 'Emancipatory Research: Realistic goal or impossible dream?', in C. Barnes and G. Mercer, Doing disability research, The Disability Press, Leeds, 1997). Creating this 'different game' remains the central challenge for disability research.