Cultural Beliefs and Attitudes about Disability in East Africa Angi Stone-MacDonald, Ph.D. University of Massachusetts, Boston Gretchen Butera, Ph.D. Indiana University, Bloomington Abstract: This interpretive literature review of cultural beliefs and attitudes about disability in East Africa identified themes in four categories including (a) the causes of disability, (b) attitudes towards disability, (c) treatment of people with disabilities, and (d) language about disability. Referencing the medical, social, and pluralistic frameworks for conceptualizing disability, the authors sought to compare and contrast East Africa with perspectives about disability common in the developed world. Implications for policy and practice are discussed. Key Words: beliefs, East Africa, culture Editor’s Note: This article was anonymously peer reviewed. The United Nations commemorated 1981 as the Year of Disabled Persons. This event signaled a growing concern about human development and the rights of marginalized peoples throughout the world. The initiatives in Education for All (EFA), originally launched in Jomtien, Thailand in 1990 and renewed in Dakar, Senegal in 2000, have served as a framework for global efforts to improve access to and the equity of primary education (UNESCO, 1994). In 2002, UN Secretary Kofi Annan commissioned the Millennium Project to develop an action plan in order to achieve progress towards the goals of the EFA. These efforts have focused attention on the enormous disparities in educational opportunities across the globe and have provided benchmarks to measure progress towards reducing them. It is clear that in an interconnected, globalized world, we cannot afford to do less than provide educational opportunity to all the world’s children (Stromquist, 2006). Disability issues have become increasingly prominent as one aspect of this movement. A major shift towards inclusive special education worldwide was demonstrated when 92 governments and 25 international organizations signed onto the Salamanca Statement on Principles, Policy, and Practices in Special Education in 1994 (UNESCO, 1994), emphasizing the importance of equity and access to educational opportunities for children with disabilities. In Africa, governments and non-governmental organizations (NGOS) have taken steps to address problems of individuals with disabilities and the African Decade of Disabled Persons (2000-2009) was proclaimed in 2000 by Heads of State and Government meeting at Lomé in 2000. A Plan of Action was adopted at the Pan African Conference on the African Decade of Disabled persons in February 2002 (African Studies Centre Leiden, 2008). Several African countries have passed disability-related legislation in an effort to improve opportunities for individuals with disabilities (Mamboleo, 2011). It is important to note that, while three components of education development (access, equity and quality) are acknowledged as critical to improving education in developing countries, access is often viewed as the lens through which equity and quality are understood. From this perspective, progress is achieved when more children have access to schools. However, the point is well made that the three components are interdependent (Piper, Dryden-Peterson & Kim, 2006). Further, while the literature on equity in international education focuses mostly on gender equity, there is increasing evidence that improving educational opportunities for individuals with disabilities in the developing world is an important marker of progress in improving educational opportunities for all (Filmer, 2006; Nyerere, 1985; Peters, 2003, 2004). Within this international context, East African countries present particular challenges. First, these countries face some of the greatest global challenges of our time including disease, environmental degradation, poverty, ethnic conflicts, and human rights abuses. A recent report on progress towards the goals of the Millennium Project indicated that many countries in East Africa are unlikely to reach them by the target date of 2015. Although universal access to primary education has generally increased across the world in recent decades, access rates in this Africa region remain substantially below 100 percent (Piper, Dryden-Peterson, & Kim, 2006). Within this context, equity issues related to the rights of individuals with disabilities to education are not frequently seen as high priority. Yet as Peters (2003) points out, disability may be the single most important factor excluding children from schooling across the world. It is difficult to establish answers to fundamental questions about disability in East Africa in part because definitions of disability differ considerably across countries and communities. The World Health Organization (WHO) defines disability as “any loss or abnormality of psychological, physiological, or anatomical structure or function” (1980 as quoted in Whyte & Ingstad, 1995, p. 5) and the WHO manual explains that a “[h]andicap depends on valuation and expectations that put the disabled person at a disadvantage” (Whyte & Ingstad, p. 6). It must be acknowledged that these valuations are culturally specific. In East Africa, the functional capacity of an individual to complete life’s daily tasks without help are especially salient and may differ dramatically in many respects from the daily life tasks of individuals in the developed world. Under such circumstances, for example, dyslexia may not be viewed as a disability in a community with high illiteracy, whereas someone with a minor physical disability many be quite disadvantaged in a community that requires individuals to walk many miles during the day while carrying needed supplies a great distance (Harknett, 1996). From this perspective, individuals with obvious deformities may be seen as normal if they can participate in daily life activities in the community. Similarly, scholars in Africa have noted that an individual not usually identified as disabled in the developed world may be considered disabled in many African communities if they cannot participate in important life activities, such as bearing children (Devlieger, 1995; Ingstad, 1995; Zhang, 2001). Given the difficulties establishing definitions of disability, it is not surprising that incidence figures for disabilities in East Africa vary considerably. WHO estimates that 10% of Africans have a disability, but there is only limited data from African countries as to the actual prevalence (Fujiura, Park, & Rutkowski-Kmitta, 2005). Peters (2003) suggests that the numbers of children with disabilities may be growing due to increasing poverty, armed conflict, child labor practices, violence and abuse, and HIV/AIDS. Models of Disability Historically, in developed countries, a medical model of disability has been the cornerstone of special education particularly to determine eligibility for special education services. In the medical model, disability may be viewed “as a defect or sickness which must be cured through medical intervention” (Kaplan, 1999). Individuals with disabilities are diagnosed based on specific characteristics and assigned to a category such as physical disabilities, mental disabilities, or sensory impairments. This perspective assumes that the function of intervention or treatment is to remediate the disability so that the individual will be better able to function within society. More recently, a social model of disability has been promoted. In this model, disability is viewed as one of many characteristics of an individual that becomes more salient depending on the individual’s social interactions. A social model of disability “regards disability as a normal aspect of life, not as a deviance and rejects the notion that persons with disabilities are in some inherent way ‘defective’” (Kaplan). As a marker of identity, disability creates a social position for an individual that is constructed in response to widely held notions of normalcy. As Garland-Thomson (1997) explains, “Disability, then, is the attribution of corporeal difference—not so much a property of bodies, as a product of the cultural rules about what bodies should be or do” (p. 6). Susan Peters (1993a, 1993b, 2004) and others (Ingstad & Whyte, 1995) argue for a merging of models to guide the design of programs and meet the needs of individuals with disabilities within the socio-cultural environment in which they live. Peters (1993a) describes a pluralistic paradigm of disability that acknowledges the importance of socio-cultural beliefs and values in conceptualizing disability. Susan Peters (1993b) also argues that the social model still only provides remediation services for students with disabilities and denies students and families self-determination. Peters prefers to use the pluralistic paradigm where normal functioning is based on local cultural beliefs and values. Socio-cultural studies of disability in the United States and other developed countries have been explored in special education in the developed world (Bogdan & Taylor, 1982; Edgerton, 1979; Haywood, 1970; Skinner & Weisner, 2007; Whyte & Ingstad, 1995) but special education’s historical beginnings within science, medicine, and psychology have tended to ground it in a medical model of disability. For many reasons, cultural beliefs and values play a critical role in the design of educational programs. Clearly beliefs and values influence decisions about curriculum as well as many other aspects of intervention even if the underlying beliefs and values are unexamined. Multicultural education is considered an offshoot of the civil rights movement and was developed in the United States and the United Kingdom as a response to increasing numbers of school children from minority cultures. It has provided much of the rhetoric about the importance of understanding cultural beliefs and values in the developed world as schools are urged to provide content that acknowledges children’s cultural identities and teaches children to respect the cultural heritage of others. Both accepting and tolerating cultural diversity and challenging cultural assumptions and stereotypes, two important goals in multicultural education depend on acknowledging and understanding cultural values and beliefs (Banks, Banks, & Banks, 1989; Stromquist, 2006). Cultural beliefs and values also play a critical role in how families and educational programs interact. As parents try to make meaning of their child’s disability, they draw on cultural beliefs and values as well as their understanding of normative development for their culture (Skinner & Weisner, 2007). Misunderstanding cultural beliefs may interfere with family participation in programs whereas understanding beliefs can facilitate trust between families and education programs (Lamorey, 2002). In an international context, discourse on cultural beliefs and values about disability has influenced services available to people with disabilities across countries and localities (Mallory et al., 1993; Mutua & Dimitrov, 2001; Teferra, 1993). In many developing countries, NGOS including missionary and other donor agencies have dominated the change agenda in education, advocating the need for large-scale changes that would modernize schooling for all children, including those with disabilities (Maclure, 2006; Nyerere, 1985). These large-scale efforts have been criticized for failing to account for local cultural beliefs and values. Others tout the benefits of local programs that privilege indigenous knowledge and favor adapting curricula to meet local cultural contexts and needs (Croft, 2002; Kisanji, 1995b, 1995c, 1995d; Miles, 2002; O’Sullivan, 2002; Stone-MacDonald, 2010). With the increased emphasis on human rights for people with disabilities, focus has been placed on education and employment opportunities for individuals with disabilities across the globe. Critical to understanding how to support the development of education and employment programs for children with disabilities in developing countries is illuminating views of disability within the cultural context in which the change is to occur. In this literature review, the cultural beliefs and values about disability in East Africa from the scholarly literature are examined in order to understand the perspectives that influence people with disabilities in their daily lives. The intent is to conduct an interpretive analysis examining the literature to find constructs, themes, and patterns that can be used to describe and explain the phenomenon under study (Gall, Gall, & Borg, 2007). The following questions frame the analysis: (a) How do themes in the scholarly literature describe cultural beliefs and attitudes about disability in East Africa? (b) How do cultural beliefs and attitudes described in the literature compare or contrast with models of disability in the developed world? Method The literature examined was written by authors from and published in North America, Europe, and Africa using the following parameters. First, for the purposes of this review, manuscripts discussing cultural beliefs and values about mental retardation, physical and sensory impairments, and developmental disabilities were included while manuscripts discussing diseases such as HIV/AIDS, cancer, malaria, or leprosy were excluded. Second, East Africa was defined as Somalia, Ethiopia, Eritrea, Tanzania, Kenya, Uganda, Rwanda, and Burundi. These countries were chosen because they represent East Africa according to the United Nations. The countries share similar rural characteristics and a large population that relies on subsistence farming for its livelihood. Tanzania, Uganda, and Kenya share a common language in Kiswahili, and some people in Rwanda and Burundi also speak Kiswahili. All of these countries except Ethiopia were former British colonies. While there are significant cultural differences between and within the countries, this review examines commonalities in cultural beliefs on a topic within this geographical region. Third, the review includes only articles written and published in English. Finally, the earliest entry is from 1982, but there was no chronological limit specifically set for the literature search. Ninety-five various forms of media including books, journal articles, movies, and government and NGO documents were examined in a larger review about beliefs in all of Sub-Saharan Africa. The current review focuses specifically on journal articles about East Africa. Using the recommendations provided by McMillan and Schumacher (2006) for qualitative literature review, online databases from anthropology, linguistics, and psychology and special education were searched. Keyword and subject searches used disability, culture, attitudes, beliefs, perceptions, Africa, and East African country names as words. Also, using advanced search functions was intended to identify as many resources as possible. Figure 1 provides a list of the resources consulted. After locating relevant articles, each document was examined and cultural beliefs and values discussed in it were listed. Each entry was coded for statements about culture, beliefs and attitudes, and specific issues related to disability in Africa. After review of the coded documents, categories were developed and representative samples were selected for illustration of each category. Review of the Literature The literature reviewed will be presented in four key categories: (a) the causes of disability, (b) attitudes about people with disabilities, (c) treatment of people with disabilities, and (d) and use of language about disability in East Africa. The results are summarized in Table 1. Beliefs about Cause of Disability In East Africa, traditional beliefs about the causes of disability continue to be prevalent. Cause is important to consider because beliefs about cause may influence how a person or family is treated. S. G. Harknett classifies beliefs about the causes of disability in three categories: (1) traditional animism includes beliefs that disabilities are punishments for bad deeds or the result of witchcraft exercised by other people. (2) Christian fatalism beliefs revolve around notions that disability results as an act of God’s will. (3) Medical determinist beliefs accept the explanations of modern medicine as to the cause of disabilities (1996). It is not uncommon for individuals to use multiple categories of beliefs about cause, perhaps in an effort to neutralize negative beliefs about disability, such as suggesting a medical explanation in addition to traditional animism (Ingstad, 1995). Taboos and Punishment for Bad Deeds Beliefs about causes of disability in the examined literature were often described as expressed in proverbs, folktales, oral tradition, and from interviews with traditional healers. Historically, Adams found in 1949 that people in Zimbabwe attributed cerebral palsy to witchcraft, spirits, or disobeying a taboo. They attributed blindness to witchcraft and leprosy to witchcraft, spirits, or natural causes (Mallory, 1993). Mbah-Ndam (1998) explained that disabilities are “regarded as punishment from the gods or bad omens, and hence [people with disabilities] are rejected or abandoned.” There are also descriptions of taboos that, when broken, are thought to cause a disability. For example, the Nandi of Kenya consider it wrong to kill animals without good reason during a wife’s pregnancy (Ogechi & Ruto, 2002). Having sexual intercourse during pregnancy is also a taboo, and breaking this too can cause the child to have a disability (Hartley, Ojwang, Baguwemu, Ddamulira, & Chavuta, 2005; Ogechi & Ruto, 2002). Laughing at people with disabilities could cause an individual to have a child with a disability himself or herself, cause an accident to befall you, or cause future generations in your family to be cursed (Ogechi & Ruto, 2002; Talle, 1995). A study from Kenya reported that family members and health care personnel believed that seizures were caused by several factors including birth trauma, abuse, witchcraft or spirits, and contact with certain animals (El Sharkawy, Newton, & Hartley, 2006). Misdeeds of family members can also cause a disability. Family members can do something wrong and the family can be punished for the act with a disabled child (Ogechi & Ruto, 2002). In Ethiopia, a father blamed his wife for causing their child’s disability after she complained about seeing a person with distorted features in the street (Teferra, 2003). In other cases, when the mistake of the family member is thought to be very bad, a child is born deaf or mute in order to keep them from telling the family secrets (Omiegbe, 2001). Divine Intervention God(s) can either bless or curse families who have a child with a disability. In several instances, although disability was accepted as an medical mishap, this explanation was accompanied by the belief that divine intervention caused the accident (Mashiri, 2000). In Tanzania, Kisanji (1995b) found the majority of tribal elders believed that disabilities were caused by God’s will (44%) or witchcraft (39%), whereas 82% of classroom teachers believed the disabilities were caused by diseases. In other studies examined, parents of children with disabilities explained that their child was a gift from God or that is was God’s will for a child to have a disability (Devlieger, 1999a; Kiyaga & Moores, 2003). Beliefs are changing and fewer East Africans are described as believing that witchcraft, curses or retribution from God(s) are the sole cause of disability. Medical explanations are more widely accepted. The influences of Christianity and Westernized education and medicine have altered traditional belief. Many report indigenous beliefs (animism) to be archaic (Ogechi & Ruto, 2002). Nevertheless, these beliefs emanate from years of oral tradition and beliefs emanating from traditional religions continue to be described as part of the culture (Omiegbe, 2001). Attitudes Toward People with Disabilities Attitudes toward people with disabilities in East Africa have both positive and negative aspects and are often linked to beliefs about the causes of disability. Throughout Africa, it is considered inappropriate to laugh or ridicule people with disabilities (Ogechi & Ruto, 2002; Talle, 1995). In a survey study of families in Kenya in which a family member had epilepsy, family members expressed a range of perspectives. Some believed that individuals with epilepsy could lead a normal life with medication, but others thought their children with epilepsy would not go to school or marry. Overall respondents identified negative attitudes within the community, but also described experiencing support from community members who helped with care and treatment when children had seizures (El Sharkawy, Newton, & Hartley, 2006). Similarly, Kisanji (1995a) found a range of views when he interviewed Tanzanian tribal elders and schoolteachers about people who were deaf, blind, or had physical or severe disabilities. Some people felt that individuals with disabilities could be productive in society if trained to do certain jobs, while others felt that training people with disabilities was a waste of time and money. In general, teachers gave more positive responses than others (Kisanji, 1995b). Treatment of People with Disabilities In many African societies, families and communities care for their children with disabilities, but children and family members appear to be less accepted into the community if the individual cannot contribute economically to the family or the community. Among the Abagusii and Nandi people of Kenya, individuals are described by how well they integrate into social and communal life (Ogechi & Ruto, 2002). As in other East African communities, integration into communal life relates to how well individuals fit within the social norms and, importantly, if they can do their share in the community, whether or not they have a disability as defined by the developed world (Mallory, Charlton, Nicholls, & Marfo, 1993). Furthermore, people with physical, hearing, and visual impairments are not seen as categorically different from others, but simply as people with a specific impairment (Ogechi & Ruto). Similarly, the Maasai of Kenya only see people with disabilities as “abnormal” if they are unable to carry out daily activities (Talle, 1995). This holistic view of people is not uncommon in Africa. Specific characteristics, such as disability appear as less important features than other aspects of an individual (Miles, 2002). Kisanji (1995c) reports that marginalization and the categorization of people with physical disabilities as “subhuman” has been reported in other East African countries, but is not seen in Tanzanian proverbs and oral tradition. In many East African communities, coming of age ceremonies, marriage, and childbearing involve very important rituals. If people with disabilities are able to take part in these rituals, they are more likely to be accepted. The ability to participate in these rituals increases social standing. Among the Maasai in Kenya, women with a disability can bear children and live in their parents’ home, instead of moving into the husband’s family home. The children of a woman with a disability will then inherit family property. In fact, this practice of the “girl of the homestead” is a privilege, and is a category not just for women with disabilities, but for other women who remain in their parent’s home for a variety of reasons (Talle, 1995). Some East African communities are reported as demonstrating care for the individuals with disabilities in order to protect the rest of the community. For example, the Chagga of Northern Tanzania believe that people with disabilities satisfy the interests of the evil spirits and if members of the community protect and care for them, evil spirits will not disturb the balance needed for daily life. Caring for individuals with disabilities, therefore, protects members of the community who are not disabled (Mallory et al., 1993). The Turkana of Kenya believe that children with disabilities are gifts from God and the families must care for their children as best they can, or God(s) will take His revenge on the family through death (Kisanji, 1995a). Families are described as caring for their children, regardless of their condition (Masasa, Irwin-Carruthers, & Faure, 2005). Among the Maasai, all children are cared for the same way, given the same food, and they all participate in the same ceremonies and rituals despite disabilities (Talle, 1995). In Ethiopia, when children go blind, parents help them to maintain and learn skills that will help them be successful (Teferra, 2003). Benedicte Ingstad recounts a story of a grown man with mental retardation who was hidden away in a locked hut, but upon questioning the family, the researcher learned that he had spent time in an institution at the recommendation of doctors and had developed many problematic behaviors. When the parents requested his release from the institution, it was only granted on the condition that he remained locked up in a hut at all times. After Ingstad gave the mother some advice and encouraged her to socialize the son, he became very friendly and did small jobs around the house and village. This family dearly loved their son and were only doing what they thought was best. They were also following the advice of the trusted professionals who, from certain perspectives, seem to have been misguided (Ingstad, 1995). People with disabilities in East Africa continue to deal with discrimination that comes about from negative attitudes and beliefs (wa-Mungai, 2009). In Kenya, it is unlawful for people with hearing or visual impairments to become president because the law requires that the president speak and read in Kiswahili and English, not Braille or sign language (Ogechi & Ruto, 2002). In a Ugandan study, caregivers reported discrimination by schools and people in the community. Deaf children are purported to be seen as a burdens to their families and are often hidden to prevent public shame from coming to the family (Kiyaga & Moores, 2003; Stone-MacDonald & Butera, 2011). In a qualitative study from Uganda, some participants did not take their children with disabilities out into the community but cared for them at home. Parents could not enroll their children in school, although they wanted their children to have an education, because the schools had rejected the students or the families could not afford the school fees (Hartley, Ojwang, Baguwemu, Ddamulira, & Chavuta, 2005). Languages of East Africa Many East African languages simply do not include words that allow “disabled” to be directly translated from English (Ogechi & Ruto, 2002). Each disability is defined and named as it relates to the body part that does not function normally. East African languages do not provide a common word or construct for “disability,” preventing individuals with different disabilities such as physical disabilities, deafness, or intellectual disabilities to be classified together. For example, the Ekegusii of Kenya term a person with an impaired hand “Nyakoboko” and a person with an impaired finger “Nyakiara” (Ogechi & Ruto, 2002). In the Maasai language, there are different words for each of the different common disabilities such as physical impairments and blindness. In Somalia, rehabilitation workers use the term “naafo” in their work, but this term only refers to individuals with amputated or badly injured limbs and does not include those who are deaf or blind (Helander, 1995). Among the Abagusii and Nandi of Kenya, children are often given personal names that describe their disability along with other clan names (Ogechi & Ruto, 2002). Ogechi and Ruto provide examples of names for children with different disabilities that could be nicknames or personal names, such as names for “one who stammers” and “big head,” referring to children with speech or mental impairments. In several countries, children are given names that denote their disability (Mashiri, 2000). Parents make choices in the terms they use to describe their children and these may reflect the extent to which they to accept the child and his or her disability. The body and words about the body are prominent in East African languages because a healthy body is important to daily life in local communities (Talle, 1995). Some words referring to disability are derogatory. For example, when referring to the deaf, the Kinyarwanda of Rwanda use the word “ibiragi” (foolishness) and in Uganda, people use the word “kasiru” (stupidity) (Kiyaga & Moores, 2003). The terms used to describe people with disabilities sometimes derive from categories typically reserved for non-humans (Devlieger, 1998; Mashiri, 2000). Only recently have people in Tanzania started using the term “ulemavu” for disability in general and the terms “asiyeona” and asiyesikia” to refer to an individual who cannot see or one who cannot hear. In Tanzania, the term “watoto wenye ulemavu,” meaning children with disabilities is relatively new in daily language (Stone-MacDonald, 2010). These newer terms use person first language and move away from words in the ki-vi noun class that are normally used to reference objects rather than people. Proverbs are an important form of oral and written communication in East Africa. In many proverbs, kindness towards individuals with disabilities and punishment for negative attitudes or actions are evoked (Devlieger, 1994). Several proverbs describe the punishments for laughing at a person with a disability. Other proverbs from around East Africa indicate that God has placed you on the earth for a reason that should be respected by others. “People with a disability represent life and death and are, therefore, highly ambiguous” (Devlieger, 1999b). According to the author, individuals with disabilities are viewed as a reminder that God controls life, death, and much that happens in between. After extensive research on the use of language as it relates to educational policy, Devlieger recommends the use of proverbs to promote the integration of people with disabilities into communities. Proverbs that express the positive position of people with disabilities in the community should be used to support education and rehabilitation programs and to foster community integration (Devlieger, 1994). He describes how proverbs might be used to “generalize a community’s experience and that each proverb [is] accompanied by a parable which provided a sketch of the original situation” (Devlieger, 1999a). More recently, wa-Mungai (2009) in describing his research in the Kakuma refugee camp in Northern Kenya, comments on the paucity of disability references in proverbs in several East African languages. While the author argues that “it is not in dominant society’s interest to come to a full acceptance of the disabled,” he also cites examples from popular Kenyan culture in which an individual with a disability is portrayed as successful. The concept of disability, he explains, is clearly in a state of flux, perpetually reworked and “invoked for the service of particular social, cultural, economic and political imperatives.” Discussion Throughout the reviewed literature about disability in East Africa, a variety of cultural beliefs and attitudes about people with disabilities are illustrated. While the literature suggests variations across different regions and cultural groups in East Africa, specific differences in the treatment of individuals with disabilities among various cultural groups are difficult to ascertain. Although clearly disadvantaged by a lack of resources to address social and educational needs, a variety of responses to disability is common. In this regard, East Africa does not differ from the nations of the developed world. Some authors report that individuals with disabilities are well cared for, generally integrated into the community, and that services to help them are provided when available. In other instances, authors report that individuals with disabilities in East African countries are ridiculed and denied services in favor of people believed to be more economically productive. The literature about disabilities in East Africa also demonstrates culturally specific attitudes and beliefs that suggest a social or pluralistic model of disability is more common in East Africa than in the developed world. First, a range of beliefs about the causes of disability is evident. While most authors document a growing awareness of the biological or genetic causes of disability, witchcraft, the breaking of taboos, punishment by God(s), indication of God(s) will or God(s) giving the child as a gift continued to be reported as an important aspect of how East Africans understand disability. Second, based on the literature reviewed, it appears that individuals with disabilities are less likely to experience stigma associated with an obvious physical deformity or a diagnostic label and more likely to face discrimination if they are unable to participate in the daily social and economic activities of the community than their counterparts in the developed world. While the range of beliefs about the causes of disabilities may seem archaic from the perspective of the developed world, it is noteworthy that the social-cultural context in which disability as an event occurs appears as a critical feature of how disability itself is understood in the East African context. It is also evident in the literature that East Africans have a more holistic view of well-being or “wholeness” than is typical in the developed world (Harknett, 1996). The reviewed literature demonstrates that East Africans are less likely to view disability as an isolated construct than individuals in the developed world. This holistic view is evident when the language used to refer to disability is examined. Specific references tend to be more often directly descriptive of characteristic appearance or the function (or lack) of various body parts. The study of East African proverbs serves to provide additional understanding about the attitudes and treatment of individuals with disabilities in East Africa and suggests that the socio-cultural context is central to understanding how disability is understood. It is of note that only recently have some East African languages had words to describe individuals with disabilities as a group. Considering the array of terms and acronyms associated with various disability categories and diagnoses in the developed world, the contrast with the developed world in this instance is pronounced. Given that a social or pluralistic model of disability is more common in East Africa, it would be easy to conclude that individuals with disabilities are more fully included in East African schools and communities. In some situations this may indeed be the case. The literature provides examples of how individuals with disabilities in East Africa are relatively well assimilated into the community. This may be more common in some rural East African communities where traditional communal social organization is more apparent (Ogechi & Ruto, 2002; Stone-MacDonald, 2010). Overall, however, there is more compelling evidence that individuals with disabilities in East Africa continue to be excluded from schools and opportunities for work, virtually ensuring that they will be live as the poorest of the poor, forced to resort to begging as a means of survival. This is of grave concern as rural to urban migration across the globe continues. A 2008 United Nations report predicts that about 80 percent of the world’s population growth to 2050 will be in urban areas in Asia and Africa. Under such circumstances, considerable strain is placed on educational services including public education (Spring, 2009) and efforts to meet the needs of individuals with disabilities may be even less likely to be prioritized. If individuals with disabilities were indeed well assimilated into African communities in the past, it appears likely that the disruption that accompanies urban migration will disrupt it. Under such conditions, unless focus continues on protecting the rights of individuals with disabilities in East Africa, Ogechi and Ruto’s (2002) statement that “[t]he positive indigenous treatment of the disabled is now fast eroding away” (p. 64) will continue. The literature reviewed is replete with examples of the importance of greater understanding of local culture and beliefs by NGOs and other agencies from the developed world as they collaborate with communities in East Africa on behalf of individuals with disabilities. Collaboration with local stakeholders in planning and implementing education and rehabilitation programs is described as essential. Clearly, in order to effectively respond to the increasingly urgent needs of individuals with disabilities in East Africa, it is critical to acknowledge multiple ways of seeing and knowing the world. As Paul Wangoola, the founder of Mpambo, The African Multiversity in Uganda explains, “problems of human kind today cannot be resolved by modern scientific knowledge alone, or by indigenous knowledge alone. More durable solutions will be found in new synthesis between indigenous knowledges and modern scientific knowledge” (as quoted in Spring 2009, p. 145). Increasingly, East African scholars advocate for this perspective about disabilities. For example, Teferra (2003) promotes holistic programs that view the whole child within their family and community. This approach supports the needs of the family and the community as well as the individual. The author insists that dialogue can increasingly sensitize key stakeholders to the needs of individuals with disabilities and their families particularly when the discussion acknowledges and builds upon indigenous knowledge in a thoughtful and respectful manner. Finally, it is important to note the importance of research that can serve to illuminate understanding of cultural beliefs and attitudes about disability in East Africa and elsewhere. It is likewise important to acknowledge that, given the enormous geographic, linguistic and demographic diversity involved in such undertakings, this as a vastly presumptive task particularly from the perspective of the developed world. Moreover, as Maclure (2006) points out, African educational research is heavily dependent on foreign funding making it difficult to ensure that the process and products that emanate from it are truly reflective of the sociocultural context in which they originate. Nevertheless, if the goal is to support people with disabilities within their families and communities and cultural knowledge is to be the foundation for developing interventions (Devlieger, 1999b) we must understand and take into account the cultural attitudes and beliefs in which they reside. Research can help us acquire the needed understanding. Angi Stone-MacDonald, Ph.D. is an Assistant Professor at the University of Massachusetts Boston in the Early Education and Care in Inclusive Settings program. Her research areas include early intervention personnel preparation, online training for early childhood educators and international special education. Gretchen Digman Butera, Ph.D. is an Associate Professor at Indiana University-Bloomington where she conducts research in early intervention for preschool children considered at risk for school failure, special education personnel preparation, and children and families in rural schools. Correspondence concerning this article should be addressed to Angi Stone-MacDonald, Department of Curriculum and Instruction, University of Massachusetts Boston, 100 Morrissey Blvd., Boston, MA 02125. References African Studies Centre Leiden (2008). Disability in Africa. Retrieved from http://www.ascleiden.nl/Library/webdossiers/DisabilityInAfrica.aspx Banks, J., Banks, C. & Banks, M. (1989) Multicultural education: Issues and perspectives. Boston: Allyn & Bacon. Bogdan, R., & Taylor, S. J. (1982). Inside out: The social meaning of mental retardation. Toronto, Ontario, Canada: University of Toronto Press. Croft, A. (2002). Pedagogy in school context: An intercultural study of the quality of learning, teaching and teacher education in lower primary classes in Southern Malawi (Unpublished doctoral dissertation). University of Sussex, Brighton, UK. Deku, P. (2002). Effects of training in community-based rehabilitation on attitudinal change of people toward people with disabilities. IFE PsychologIA, 10(2), 175-184. Devlieger, P. J. (1994). Disability and community action in a Zimbabwean community: Priorities based on a biocultural approach. Journal of the Steward Anthropological Society, 22(1), 41-57. Devlieger, P. J. (1995). Why disabled? The cultural understanding of physical disability in African society. In B. Ingstad & S. R. Whyte (Eds.), Disability and Culture (pp. 94-106). Berkley, CA: University of California Press. Devlieger, P. J. (1998). Physical 'disability' in Bantu languages: understanding the relativity of classification and meaning. International Journal of Rehabilitation Research, 21(1), 51-62. Devlieger, P. J. (1999a). Frames of reference in African proverbs on disability. International Journal of Disability, Development, and Education, 46, 439-451. Devlieger, P. J. (1999b). Local knowledge and international collaboration in disability programs. In B. Holzer, A. Vreede & G. Weigt (Eds.), Disability in different cultures: Reflections on local concepts (pp. 167-179). New Brunswick, NJ: Transaction Publishers. Edgerton, R. B. (1979). Mental retardation. Cambridge, MA: Harvard University Press. El Sharkawy, G., Newton, C., & Hartley, S. (2006). Attitudes and practices of families and health care personnel toward children with epilepsy in Kilifi, Kenya. Epilepsy and Behavior, 8, 201-212. Filmer, D. (2008) Disability, poverty and schooling in developing countries: Results from 11 household surveys. Worldbank Policy Research Working Paper 3794. Retrieved from http://wber.oxfordjournals.org/cgi/content/abstrct/22/1/141 Fujiura, G. T., Park, H. J., & Rutkowski-Kmitta, V. (2005). Disability statistics in the developing world: A reflection on the meanings in our numbers. Journal of Applied Research in Intellectual Disabilities, 18, 295-304. Gall, M., Gall, J., & Borg, W. (2007) Educational research (8th ed.) Boston, MA: Pearson. Garland-Thomson, R. (1997). Extraordinary bodies. New York: Columbia University Press. Harknett, S. G. (1996). Cultural factors in the definition of disability: A community study in Nyankunde, Zaire. African Journal of Special Needs Education, 01, 18-24. Hartley, S., Ojwang, P., Baguwemu, A., Ddamulira, M., & Chavuta, A. (2005). How do carers of disabled children cope? The Ugandan perspective. Child: Care, Health & Development, 31, 167-180. Haywood, H. C. (1970). Social-cultural aspects of mental retardation: Proceedings. New York: Appleton-Century-Crofts. Helander, B. (1995). Disability as incurable illness: Health, process, and personhood in Southern Somalia. In B. Ingstad & S. R. Whyte (Eds.), Disability and Culture (pp. 73-93). Berkley, CA: University of California Press. Ingstad, B. (1995). Mpho ya modimo-A gift from God: Perspectives on "Attitudes" toward disabled persons. In B. Ingstad & S. R. Whyte (Eds.), Disability and culture (pp. 246-264). Berkley, CA: University of California Press. Ingstad, B., & Whyte, S. R. (Eds.). (1995). Disability and culture. Berkley: University of California Press. Kaplan, D. (1999). The Definition of Disability. Retrieved from http://www.accessiblesociety.org/topics/demographics-identity/dkaplanpaper.htm Kisanji, J. (1995a). Attitudes and beliefs about disability in Tanzania. In B. O'Toole & R. McConkey (Eds.), Innovations in developing countries for people with disabilities (pp. 51-70). Chorley, England: Lisieux Hall Publications. Kisanji, J. (1995b). Interface between culture and disability in the Tanzanian context: Part I. International Journal of Disability, Development, and Education, 42(2), 93-108. Kisanji, J. (1995c). Interface between culture and disability in the Tanzanian context: Part II. International Journal of Disability, Development, and Education, 42(2), 109-124. Kisanji, J. (1995d). The relevance of indigenous customary education principles in the formulation of special needs education policy. Paper presented at the International Special Education Congress Birmingham, England, UK. Kiyaga, N. B., & Moores, D. F. (2003). Deafness in Sub-Saharan Africa. American Annals of the Deaf, 148, 18-24. Lamorey, S. (2002). The effects of culture on special education services: Evil eyes, prayer meetings, and IEPs. Teaching Exceptional Children, 34, 67-71. Livingston, J. (2005). Debility and the moral imagination in Botswana. Bloomington, IN: Indiana University Press. Maclure, R. (2006). No longer overlooked and undervalued? The evolving dynamics of endogenuous educational research in Sub-Saharan Africa. In B. Piper, S. Dryden-Peterson, & Y. Kim (Eds.), International education for the millennium: Toward access, equity and quality (pp. 75-102). Cambridge, MA: Harvard University Press. Mallory, B. L., Charlton, J. I., Nicholls, R. W., & Marfo, K. (Eds.). (1993). Traditional and changing views of disability in developing societies: Causes, consequences, cautions [Monograph #53]. New York: World Rehabilitation Fund. Mamboleo, G. (2011). Predictors of attitudes toward disability and employment policy concerns among undergraduate students at the University of Nairobi [Doctoral dissertation]. University of Arizona, Tucson, Arizona. Masasa, T., Irwin-Carruthers, S., & Faure, M. (2005). Knowledge of, beliefs about and attitudes to disability: Implications for health professionals. South African Family Practice, 47(7). Mashiri, P. (2000). The socio-cultural and linguistic aspects of childhood disability in Shona culture. Zimbabwe Journal of Educational Research, 12(2), 170-194. Mbah-Ndam, J. N. (1998). Caring for the disabled: The African experience. The Parliamentarian: Journal of the Parliaments of the Commonwealth, 79, 251-252. McMillan, J. H., & Schumacher, S. (2006). Research in education: Evidence-based inquiry (6th ed.). Boston, MA: Pearson/Allyn and Bacon. Miles, M. (2002). Children with hydrocephalus and spina bifida in East Africa: Can family and community resources improve the odds? Disability & Society, 17(6), 643-658. Mutua, K., & Dimitrov, D. M. (2001). Prediciton of school enrolment of children with intellectual disabilities in Kenya: The role of parents' expectations, beliefs, and education. International Journal of Disability, Development and Education, 48, 179-191. Nyerere, J. (1985) Education in Tanzania. In B. Piper, S. Dryden-Peterson, & Y. Kim (Eds.), International education for the millennium: Toward Access, equity and quality (pp. 109-118). Cambridge, MA: Harvard University Press. O'Keefe, P. (2007). People with disabilities in India: From commitments to outcomes. Retrieved from http://siteresources.worldbank.org/DISABILITY/Resources/Regions/South%20Asia/PeoplewithDisinIndia.pdf Ogechi, N., & Ruto, S. (2002). Portrayal of disability through personal names and proverbs in Kenya: Evidence from Ekegusii and Nandi. Vienna Journal of African Studies, 3, 63-82. Omiegbe, O. (2001). Superstitious beliefs associated with the handicapped in Africa. In A. O. Orubu (Ed.), African traditional religion (a book of selected readings) (pp. 62-72). Benin City, Nigeria: Institute of Education University of Benin. O’Sullivan, M. C. (2002). Reform implementation and the realities within which teachers work: a Namibian case study. Compare, 32, 219-237. Peters, S. J. (1993a). An ideological-cultural framework for the study of disability. In S. J. Peters (Ed.), Education and disability in cross-cultural perspective (pp. 19-35). New York: Garland Publishing. Peters, S. J. (Ed.). (1993b). Education and disability in cross-cultural perspective. New York: Garland Publishing. Peters, S. J. (2003) Education Notes. Retrieved from http://www.worldbank.or/education. Peters, S. J. (2004). Inclusive education: An EFA strategy for all children. Retrieved from http://siteresources.worldbank.org/EDUCATION/Resources/278200-1099079877269/547664-1099079993288/InclusiveEdu_efa_strategy_for_children.pdf Peters, S. J., & Chimedza, R. (2000). Conscientization and the cultural politics of education: A radical minority. Comparative Education Review, 44, 245-271. Piper, B., Dryden-Peterson, S., & Kim, Y. (2006) Introduction. In B. Piper, S. Dryden-Peterson & Y. Kim (Eds.), International education for the millennium: Toward access, equity and quality (pp. 1-8). Cambridge, MA: Harvard University Press. Skinner, D., & Weisner, T. S. (2007). Sociocultural studies of families of children with disabilities. Mental Retardation and Developmental Disabilities, 13, 302-312. Spring, J. (2009) Globalization of education: An introduction. New York: Routledge. Stone-MacDonald, A. (2010). From Goats to Gardens: Preparing Children with Developmental Disabilities for Community Integration in Rural Tanzania (Unpublished doctoral dissertation). Indiana University, Bloomington, Indiana. Stone-MacDonald, A., & Butera, G. (2011). Immigration, globalization, and special education: Joy becomes an American. Unpublished manuscript. Stromquist, N. P. (2006). Comparative and international education: A journey toward equality and equity. In B. Piper, S. Dryden-Peterson, & Y. Kim (Eds.), International education for the millennium: Toward access, equity and quality (pp. 15-36). Cambridge, MA: Harvard University Press. Talle, A. (1995). A Child is a child: Disability and equality among the Kenya Maasai. In B. Ingstad & S. R. Whyte (Eds.), Disability and Culture (pp. 56-72). Berkley, CA: University of California Press. Teferra, T. (1993). Problems and prospects of persons with disabilities in Ethiopia. Ethiopian Journal of Development Research, 15(1), 67-88. Teferra, T. (2003). Early Intervention Practices: Ethiopia. In S. L. Odom, M. J. Hanson, J. A. Blackman, & S. Kaul (Eds.), Early intervention practices around the world (pp. 91-107). Baltimore, MD: Paul H. Brookes. UNESCO (1994). The Salamanca statement and framework for action on special educational needs. Report generated at the World Conference on Special Needs Education: Access and Quality, Slamanca, Spain. Retrieved from http://www.unesco.org/education/pdf/SALAMA_E.PDF wa-Mungai, M. (2009). “For I name thee…” Disability onomastics in Kenyan folklore and popular music. Disabilities Studies Quarterly, 29, 4. Retrieved from http://www.dsq-sds.org/article/view/9841172 Whyte, S. R., & Ingstad, B. (1995). Disability and culture: An overview. In B. Ingstad & S. R. Whyte (Eds.), Disability and Culture (pp. 3-32). Berkley, CA: University of California Press. Zhang, C. (2001). Multicultural views of disability: Implications for early interventionist professionals. Infant-Toddler Intervention, 11, 143-154. Figure 1. List of Databases Consulted Academic Search (EBSCO) African Journals Online African Studies (Biblioline Quick Search) African Studies Companion Anthropological Index Online Anthropology Plus Bibliography of Africana Periodical Literature Database Center for Research Libraries Current Bibliography on African Affairs (2002-2006) Dissertations and Theses Abstracts ERIC IUCAT (Indiana University Library Catalog) JSTOR Linguistics and Language Behavioral Abstracts MLA International Bibliography PAIS International PsychINFO Quarterly Index of African Periodical Literature Theses Canada Web of Science WorldCAT Table 1. Summary of Key Categories Categories Articles Country Taboos and Punishment for Bad Deeds Mallory et al. (1993) Talle (1995) Mbah-Ndam (1998) Ogechi & Ruto (2002) Kiyaga & Moores (2003) Hartley et. al (2005) El Sharkawy et. al (2006) Various Countries Kenya Various Countries Kenya Various Countries Uganda Kenya Blaming Individuals Talle (1995) Mashiri (2000) Omiegbe (2001) Ogechi & Ruto (2002) Teferra (2003) Kenya Kenya Various Countries Kenya Ethiopia Divine Intervention Mallory et al. (1993) Kisanji (1995b) Devlieger (1999a) Mashiri (2000) Omiegbe (2001) Kiyaga & Moores (2003) Various Countries Tanzania Various Countries Kenya Various Countries Various Countries Attitudes Toward People with Disabilities Kisanji (1995b) Talle (1995) Deku (2002) Ogechi & Ruto (2002) Kiyaga & Moores (2003) El Sharkawy et. al (2006) Tanzania Kenya Various Countries Kenya Various Countries Kenya Treatment of People with Disabilities Mallory et al. (1993) Devlieger (1995) Ingstad (1995) Kisanji (1995b) Talle (1995) Miles (2002) Ogechi & Ruto (2002) Teferra (2003) Various Countries Various Countries Various Countries Various, Tanzania Kenya East African countries Kenya Ethiopia Language Differences Helander (1995) Talle (1995) Devlieger (1998) Devlieger (1999a) Ogechi & Ruto (2002) Kiyaga & Moores (2003) Stone-MacDonald (2010) Somalia Kenya Various Countries Various Countries Kenya Various Countries Tanzania