Policymakers must engage with caregivers and persons with disabilities to identify areas that require reform. Photo by Gerd Altmann.
During times of crisis –like the current pandemic, vulnerable groups are particularly subjected to stress, which, in addition to pre-existing stressors, propel them into increasingly precarious social positions. Like many low middle-income countries, Kenya faces issues concerning accessibility and stigma when it comes to persons with disabilities (PwDs), which have not been fully addressed at the national level. According to the World Health Organization (WHO), disability is not one specific health problem, but rather a complex phenomenon “reflecting the interaction between features of a person’s body and features of the society in which he or she lives.” Estimates by the WHO place global disability at 15 per cent. Considering the prevalent stigma around disability in Kenya, reported numbers may be significantly deflated.
The poverty rate of persons with severe disabilities is one in two (42 per cent). According to an analysis of the 2019 census reports released by the Kenya Bureau of Statistics, 2.2 per cent (0.9 million) of Kenyans live with some form of disability, with most living in rural areas. There is a strong correlation between poverty and disability, as approximately 67 per cent of PwDs in Kenya are impoverished.
The younger demographic exhibits the highest numbers of people with disabilities. Children born with a disability can be particularly disadvantaged if society attributes their impairment to a “curse.” Morally, disability is often viewed as a punishment for parents’ sins, particularly the mother. Furthermore, husbands may abandon their wives and child post-birth due to stigma. In extreme cases, both parents may abandon the child, who in turn is sent to an orphanage. In some instances, children with disabilities are hidden away, further restricting their access to social services.
A particular point of concern is the transition period to adulthood. Early efforts to provide education for PwDs in Kenya were spearheaded by religious and civil groups including the Salvation Army, the Catholic Church, and the Aga Khan Community. Statistics indicate that 17 per cent of children (6-17 years) with a disability had never attended school compared with 10 per cent without a disability. Lower education rates and lower quality schooling have lifelong economic impacts. Working age adults with disabilities are less likely to enter the formal workforce and have less job security.
According to a report by the Aga Khan University’s East Africa Institute, the unemployment rate amongst the surveyed Kenyan youth in 2016 was around 55 per cent. Estimates for PwD unemployment rates were about 40 to 60 per cent higher relative to their peers.
Consequently, PwDs often feel that they are not granted the same rights as others. One particular study attributes this outcome to the historical use of both the medical and moral/religious model. The medical model (MM) conceptualises disability as a ‘disease’ which requires a cure in order to return to ‘normalcy’ and ‘able-bodiedness.’ The MM perpetuates the stigma that disability is synonymous with abnormality. Efforts are geared towards transforming afflicted individuals into productive members of society.
The Kenyan government has put various measures into place to aid PwDs and their families. For example, a cash transfer programme backed by the National Development Fund for Persons with Disabilities provides support for assistive devices; there are also funds/grants that subsidize educational costs. National benefits exist, but that comes with awareness barriers to accessing these benefits, particularly in rural areas. The vast majority of PwDs in Kenya are currently excluded from the cash transfer programme because the target demographic is limited to persons with severe disabilities.
What is particularly troubling is evidence from the Kenya National Commission on Human Rights which indicates that many PwDs are unaware of their rights, or the legislation in place to protect them— including the right to access education, healthcare and job training support. A 2018 report by Development Pathways recommends improving social protection for PwD by improving access to data on PWDs. This involve strengthening the pre-existing mechanisms of data collection, increasing investments in social security, improving disability assessment/inclusion criteria, strengthening linkages between social services, and mainstreaming disability governance arrangements to improve accessibility and rural awareness of programmes.
Emphasis on the various causes of disability should also be promoted through advocates and educational instruction to fight stigma. Advocates can be supported through [social] media platforms or by working with local community structures to foster knowledge around the rights and resources available to PwDs.
Lastly, an often overlooked area of concern is the caregiver. Many have highlighted feelings of social discrimination and exclusion in several domains of their lives. Although caregivers practice adaptive coping strategies, their responsibilities have physical and psychological consequences. Caregivers could benefit from nationally sponsored community respite services, support groups or skill training. They additionally require adequate financial support if unable to engage in income earning activities.
Limited access to therapy, rehabilitation, and socioeconomic empowerment prevents PwDs from having equal opportunities to fully engage in society. This infringement on their rights limits their ability to participate and be recognised as equals in society. It is absolutely vital that the Kenyan government uses a bottom-up approach to enact policies and engage with parents, caregivers and advocates to create supportive care structures that allow those with disabilities to integrate into a society where they have the right to live with dignity and respect.
Melissa Tirkha is a research assistant in the Paediatrics Department of the Aga Khan University Hospital, Nairobi conducting research on quality of life for children with cerebral palsy.