Abstract

Cultural narratives on disability have received much attention over the past few decades. In contexts of poverty, limited information and everyday challenges associated with having, or caring for someone with a disability, different understandings have emerged. A project was set up to promote disability awareness in neighborhood communities in a rural part of Kenya, using a process of reflection and education. This paper reports on the first aspect–reflection. The aim was to investigate local understanding of disability as a co-constructed concept. The research questions were: 1. What cultural beliefs shape local understanding of disability? 2. What challenges are perceived to be associated with disability? A phenomenological approach was adopted. Focus group discussions were conducted with twenty-one community groups involving 263 participants and audio-recorded. The data were transcribed and thematic analysis was carried out. Visual maps were created to illustrate any interconnections, before establishing the final conclusions. Local beliefs attributed disability to: human transgression of social conventions, particularly concerning inappropriate family relations, which invoked a curse; supernatural forces affecting the child; the will of God; unexplained events; and biomedical factors. Challenges associated with disability related to the burden of caregiving and perceived barriers to inclusion, with stress as a shared bi-product. Local understanding of disability in this rural part of Kenya demonstrated overlapping explanations and plurality of beliefs. Two possible interpretations are offered. Firstly, oscillation between explanatory lines demonstrated instability, affecting broader acceptance of disability. Secondly, and more positively, in the face of challenges, the desire to make sense of the existing situation, reflected a healthy pluralism.

Highlights

  • MethodsTo capture the commonly held views and experiences of the community, the research adopted a phenomenological approach with reference to Creswell et al’s description [57]

  • Information on the causes of childhood disability is not widely available across communities in low-income countries [1]

  • This paper reports on the first aspect–reflection, which investigated local understanding of disability as a co-constructed concept

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Summary

Methods

To capture the commonly held views and experiences of the community, the research adopted a phenomenological approach with reference to Creswell et al’s description [57]. The setting was Kilifi County, situated on the Indian Ocean coast. Christianity was observed by about 70% of the people, traditional religious practices by 20% and Islam by about 10%. Kilifi was among the poorest areas in Kenya, with a poverty level of 71% (Kenya Commission on Revenue Allocation). Based on a county-wide population of 1,109,735 and using a 15% prevalence of disability [59], it was estimated there were 166,460 people with disabilities in Kilifi County. It was envisaged that most people would have experience of people with disabilities in their extended families and communities

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