Culture, defined as local beliefs, practices, role assignments and symbolic practices by which men and women live (Eagleton, 2016), can play a formative role in demarcating members of a shared collective. It can shape what members of a community perceive as important and problematic cultural issues. Culture is also dynamic. Community members and structures, both carriers of cultural knowledge, ascribe roles and responsibilities by which individuals operate and make meaning of perceived differences among them, including disability status (Ingstad & Grut, 2007). Furthermore, the perceptions and assignment of status of people by a society affect issues of development for individuals with disabilities and orients the phenomenon, disability, relative to what is considered socially and culturally by a group as normative (Devlieger, 2005).
Specifically, local perceptions of disability and status affect social participation and inclusion of people with disabilities. Understanding local worldviews may mitigate societal prejudices and discrimination while increasing inclusion of individuals with disabilities. Per the International Classification of Functioning, Disability and Health (ICF) model, disability is a component of health, not a consequence of disease, determinant of health, or risk factor (World Health Organization, n.d.). What qualifies as a disability depends on social prescriptions (McColl et al. 2006). This may be further contextualized by cultural views of disability as persons with disability may be viewed as individuals with lesser capabilities who become dependent on others for their well-being and functioning.
Researchers have shown that culture not only carried negative connotations by labeling individuals according to the nature of a disability but also resulted in biases. What was more, biases were shown to be acts of social exclusion that prevented other groups from participating in and benefiting from the wealth, power, knowledge and decision-making capacities of a larger community (Eide & Ingstad, 2011). Such exclusions have resulted in a sense of hopelessness and vulnerability of the discriminated group members while their legitimate interests were not protected. For instance, people have been denied the opportunity to participate in important social gatherings, including weddings and community parties, and have been unable to actively deliberate on community issues. Denial of mainstreaming disability-related interests has meant that individuals have been unable to be productive and access education. Additionally, blocked interests have resulted in increased levels of stress and poor self-image among persons with disabilities while thwarting their sense of belonging among their families and communities.
Belief systems
Lukalo and Savala (2021) discovered that in Kakamega County, Kenya people believed disability was a curse from God or the ancestors. The community also believed that mistreating a person with a disability could result in a curse. Disability was feared and revered. Elsewhere, a person with a psychiatric condition was stigmatized and seen as possessed by evil spirits while an individual who was barren was perceived as having “no eyes” since they had not propagated for offspring who would continue their lineage and take care of them in old age (Devlieger et al., 2006). Being blind had meaning beyond the ability to see. In a study conducted among different communities in Cameroon, Ethiopia, Zambia, Uganda and Senegal, common beliefs people held regarding the cause of childhood disability included sin, promiscuity of the mother, an ancestral curse and demonic possession (Rohwerder, 2018).
The inferences of disability in Kenya
Positive inferences of disability have included reverence, community giving and assistance, and prayers; yet negative connotations have contributed to the discrimination and marginalization of people with disabilities (Turmusani et al., 2002). There are 42 or more ethnic communities in Kenya. Each ethnic group maintains their own social constructions of disability. Disability has been explained in terms of a curse visited on families due to unfulfilled promises, sins owing to social atrocities committed by family or relatives, or because of witchcraft visited on people due to jealousy or competition among family or community (Talle, 1995; Tororei, 2009). This mindset, assigned through cultural definitions of disability, has hampered access to equitable distribution of work opportunities as well as communal activities for individuals. These views can define the status of persons with disabilities long after individuals obtain an education, reach adulthood and become economically independent or empowered. Furthermore, despite advances in science, including scientific explanations of disabilities, cultural biases remain pervasive thereby marginalizing individuals in their quest for participation and development (Monk & Wee, 2008). Western cultures have likewise maintained moral and medical models of explanation of disability (Shapiro, 1994). Professionals advised parents to take their children to institutions for mental health or to segregate them by other means (Shapiro, 1994). According to Kilbourne et al. (2006), people with disabilities were castrated to rid society of disability in time.
Rights protections
The way people with disabilities have been treated has shown some change, though largely they have continued to be denied opportunities for equal representation and treatment. Kenya improved the legal position of people with disability beginning in 2003 when the People with Disabilities Act (PWD) was passed (Otieno, 2009). The PWD Act provided a right to non-discrimination on grounds of disability (The Equal Rights Trust, 2012). By 2008, Kenya ratified the United Nations Convention on the Rights of Persons with Disabilities (Meroka & Amenge, 2016). This action placed specific regard for individuals’ integration into service delivery while promoting their rights to supportive environments (Monk & Wee, 2008). Even so, Frank (2006) underscored the compounding impact of poverty on disability, underscoring people, especially youths, lacked the ability to improve their situation if not afforded equal opportunities. Scholars have linked poverty with disability (Barnes & Sheldon, 2010) and secondary disabilities to malnutrition, poor living conditions and inaccessibility to primary healthcare (Eide & Ingstad, 2011; Opini, 2010). An additional limitation for individuals with disabilities is unequal access to educational opportunities. Where opportunities for education exist, individuals spend a long time in school and then in their transitioning to and establishing economic empowerment.
Inclusion of individuals via family and community based approaches
Family and community can play an integral role in addressing issues of culture, disability and discrimination. Increased family and community involvement in empowerment programs can target family and community members’ education with impacts on perceptions, attitudes and mindsets that deem individuals with disability as lesser and unable. Modifying the social and participatory environment to re-affirm, interpret and accommodate cultural constructs of disability may assist in facilitating community participation and inclusion (Chan et al., 2009).
Community-based rehabilitation (CBR) programs have also been shown to provide avenues for empowering individuals who have disabilities. CBRs can be utilized by individuals to access community resources, which increases opportunities for work participation and productivity (Otieno, 2009). CBRs offer the person opportunities for preparedness, collective bargaining, self-advocacy and participation in the community for the purpose of individual development and independence. This approach addresses challenges that otherwise stand out in the community and are barriers to empowerment, access to rights and resources, and employment opportunities.
Conclusion
Deliberate government efforts aimed toward inclusion, targeted collective empowerment programs, individual and group advocacy networks, and meaningful family involvement should be continuously reviewed, implemented and amplified. Chief among efforts is a need to rethink disability and conceptualize it in ways that focus on genuine inclusiveness and persons’ rights.
About the author
Philomena Jepkemboi Tanui, PhD, is an Associate Professor, School of Education, Department of Psychology at Masinde Muliro University of Science and Technology. Dr. Tanui researches psychosocial factors affecting individuals living with disabilities with a focus on persons living with visual impairment and the unique challenges they experience navigating and mastering environmental barriers, cultural biases and other forms of social exclusion. Dr. Tanui explores inclusive education and practices that enable individuals with visual impairment to transition through school systems to work life participation and independent living. She is particularly interested in assistive technology, support materials and school and workplace accommodations whereby inclusion and meaningful participation of people with visual impairment, including employment, retention and promotion, for both employers and employees are objectives and stress factors are attributed to individual performance rather than disability. Additionally, Dr. Tanui has made contributions to rehabilitation counseling via her community-based work with families and applied Community-Based Rehabilitation tenets espoused by the World Health Organization through evaluations of employment opportunities and outcomes for youth with visual impairment. Dr. Tanui served as a Senior Lecturer at Archbishop Mihayo University of Tabora, Tanzania, a Rapporteur at the first conference held in Africa on deaf blindness, Nairobi, Kenya, and as presenter on inclusive development for World Disability Day, Tabora, Tanzania.
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