The last decade has seen improved public awareness of disability in sub-Saharan Africa. However, negative and stereotypical views of disability persist in some communities. How a community views, understands and responds to individuals with disabilities is important to the roles they occupy in everyday life. Cognitive maturity, cultural beliefs and practices, information availability and exposure to people who have disabilities are influential factors . Childhood representations of disability tend to be negative and typically associated with an undesirable condition. A project was set up to promote disability awareness in a rural part of Kenya, using a process of reflection and education. Experts-by-experiences presented their personal narratives to twenty community groups.
The research questions were organised to correspond to the components of ’reflection’ and ‘education’. Reflection focused on existing processes, experiences and concepts espoused by members of a community. Education was concerned with attitudes and responses to persons with disabilities pre- and post-intervention.
The reflection component addressed the following research questions:
1. What cultural beliefs and knowledge shape local understanding of disability?
2. What challenges are perceived to be associated with disability?
The education component address the following research question:
3. How do personal narratives of experts-by-experience affect the perceptions, values and understanding of community groups?
A phenomenological approach was adopted.
The study was conducted across five constituencies of Kilifi County, Kenya (Magarini, Malindi, Kilifi North, Kilifi South and Ganze). The focus was on two types of established community group, namely community health worker groups (CHW), who were volunteers brought together to support the work of health dispensaries and health centres, and women’s groups (WG), who were registered with the Women Microfinance Trust.
Focus group discussions (FGD) were conducted with each community group at two time points: pre- and post-interventions. The pre-intervention FGD was comprised of two parts. The first part explored local understanding of disability and the perceived challenges associated with living with a disability or providing care for someone with a disability. The second part focused on experiences of people with disabilities, encounters with and responses to people with disabilities, and the roles of the group members. This questioning route was repeated in the post-intervention FGD.
The intervention was focused on disability awareness using the mantle of the expert-by-experience. A retired special educational needs teacher, familiar with local organisations for people with disabilities, and conversant in the local languages, as well as Kenyan Sign Language, recruited five adults living with disabilities to the expert group. Individuals were identified via special schools and units and invited to take part in the development and delivery of a disability awareness training initiative.
Outputs included improved knowledge and understanding of disability in the local communities, greater recognition of the person before the disability and a shared resolve toward collective action that will improve the lives of people with disabilities and their caregivers.
View the first published paper
Principal Investigator: Karen Bunning (UEA).
Co-Investigator: Joseph K. Gona (Kenya Medical Research Institute: KEMRI)
Advisor: Professor Charles Newton (University of Oxford; KEMRI)
Advisor: Emeritus Professor Sally Hartley (UEA; London School of Hygiene & Tropical Medicine)
Advisor: Dorothy Randu (Educational Assessment and Resource Centre, Kilifi, Kenya.
Mary Kifalu (Physiotherapy Department, Kilifi County Hospital, Ministry of Health, Kilifi, Kenya)