Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya

Joseph K Gona,Charles R Newton,Sally Hartley,Karen Bunning

doi:10.1186/s12914-018-0158-2

Abstract

BackgroundThe last decade has seen improved public awareness of disability in sub-Saharan Africa. However, negative and stereotypical views of disability still persist in many communities. We conducted a study to promote awareness of disability in rural Kenya, using a process of reflection and education. This paper reports on the second aspect – education. The research question was: How can personal narratives of living with disability affect community attitudes and responses to disability?MethodsA qualitative phenomenological approach was adopted. Twenty community-based groups involving 249 participants took part. Each group participated in one focus group discussion at baseline, to explore the members’ personal experiences and views of disability. The intervention involved three adults with disabilities sharing their personal narratives with each group. After the intervention, repeat focus group discussions were conducted with each group. Thematic analysis was carried out according to the framework method.ResultsThe emergent framework consisted of four main themes, organised as opposing constructs: ‘burden’ and ‘agency’, ‘sub-human’ and ‘human’. ‘Burden’ focused on the perceived hopelessness of the situation. Post-intervention revealed greater support for the ‘agency’ of persons with disabilities, evidenced by what the person could do, rather than their inability, and the relevance of support. The ‘sub-human’ to ‘human’ construct captured dehumanising and discriminating practice towards persons with disabilities on one side, and recognition of the person and inclusion in the community on the other. Whilst support and empathy were evident at the pre-intervention stage, post-intervention revealed greater recognition of people with disabilities as fellow human beings.ConclusionThis study provides a proof of concept regarding the deployment of persons with disabilities as agents for change. Exposure to experts-by-experience provided community groups with opportunities to reflect on, examine and adjust their views on disability in this rural part of Kenya. The sharing of personal narratives appeared to resonate with group members, to encourage recognition of the person and not just the disability, and to move their resolve toward ideas for collective action. Further research is needed to assess the effects of such interventions.

Highlights

The last decade has seen improved public awareness of disability in sub-Saharan Africa
The research contributes to the evidence on Community-Based Rehabilitation (CBR), demonstrating the potential of a low-cost, relatively brief intervention, which may be applicable in other lowincome settings
The personal narratives served to authenticate the process of learning by the community groups

Summary

Introduction

The last decade has seen improved public awareness of disability in sub-Saharan Africa. Negative and stereotypical views of disability still persist in many communities. We conducted a study to promote awareness of disability in rural Kenya, using a process of reflection and education. Cognitive maturity [1,2,3], cultural beliefs and practices [4], information availability [5, 6] and exposure to people who have disabilities [7] are influential factors [8]. Childhood representations of disability tend to be negative and typically associated with an undesirable condition [9], resistant to parental influence and closely aligned to an individual or medical model, with attention given to physical and biological factors [9, 10]. It was observed that parents resort to early mental representations in response to open-ended questions, as opposed to closed question responses that were aligned to the social model [1]

Methods

Results

Discussion

Conclusion