Abstract:
Background: The last decade has seen improved public awareness of disability in subSaharan 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?
Methods: A qualitative phenomenological approach was adopted. Twenty communitybased 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.
Results: The 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.
Conclusion: This 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.