Engaging local communities A parent’s Perspective Susanah W. Kimani DisN (Disability Information & Support Network )

Background - Some Facts about Disability in Africa Sub-Saharan Africa has a long history of stigma associated with disability (Ingstaad and Reynold 1995; Groce et al 2011; Secker 2012). A common belief is that individuals are born with or acquire a disability because they or a family member have sinned, violated a taboo or have aroused jealousy or anger in another (Foxcraft 2009). Where witchcraft is concerned, disabled individuals are often considered ‘victims’, but are not necessarily seen as innocent (UNICEF 2005). People with disabilities are frequently believed to spread their ‘ill fortune’ to others either intentionally or unintentionally. Because of this, they and their families are often shunned. (Scheer and Groce 1988; Ingstaad and Reynold 1995; UNICEF 2005; Secker 2012).

Infant Disability The birth of an infant with a disability is often perceived as the loss of a “perfect” baby and is typically an unanticipated event for the entire family.  Parents are immediately confronted by barriers including; negative attitudes, inadequate health services and lack of information & guidance. Lack of proper diagnosis and care plan in largely private health care systems compounds the problem. Absence of timely and appropriate early intervention and support often leads to long-term consequences, and profound isolation.

Inclusive Education - mild disabilities (Kenya) Mainstream primary schools lack key materials and resources. Teachers lack the training and skills to meaningfully include disabled children in their lessons. Assessment of children with impairments are inadequate, vital information and advice not passed on to school staff. All conditions and ages in same class. Attitudes of non-disabled staff and students (plus parents) present barriers to disabled children’s inclusion. Poor understanding of a child’s impairment, combined with stigma, can lead to a lack of recognition of educational capabilities and the inclusive accommodations that need to be made. Disabled children can find themselves effectively dismissed by school staff as ‘somebody else’s problem’.  Disabled children can also be prevented from accessing education by the attitudes and the decisions of their families.

Social Inclusion In Africa there exists deeply rooted stigma and widely held discriminatory attitudes towards persons with learning disabilities (LD) and mental health (MH) problems. In many countries, MH and LD are attributed to spiritual matters and families can be ostracized and feared. Some religious groups try to “heal” disabled people through prayers – when this is not achieved families are blamed (lack of faith or sin) This drives the issue underground, so that babies and children with severe learning disabilities are hidden, locked in rooms, denied access to social life, health care and education. Some cultures e.g. the “Samburu” are known to kill disabled children. Due to this level of stigma, persons with disabilities are often invisible in the community and excluded from participation in the social, economic and cultural life of their communities.

Efforts by DPOs and gov. in Kenya

Looking ahead – how do we engage these communities? Inform - knowledge and understanding about disability Support advocacy and campaigns to reduce stigma - especially by disabled people and their families. Health and Education professionals working with persons with disabilities need experience/exposure and resources. Self-help groups to tackle isolation and share information. DPOs - most effective are the ones led by those with direct experience of disability. International focus on the plight of disabled people in Africa.

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