With multiple types and causes, impairment or disability can affect any person at some point in life, temporarily or permanently. Though impairment and disability had been used interchangeably well into the 1970s, disability movement espoused a social model that distinguished between the two i.e., impairment as a function of the condition the body or mind, and disability as an undesirable “outcome of an oppressive relationship between people with impairments and the rest of society” (31). This powerful distinction between the body and the society/culture, impairment and disability has helped the disability movement towards the advancement of the rights of persons with disabilities (PwDs).
But these achievements of the social model came at the cost of, some writers (e.g., Hughes and Paterson 1997) argued, emptying disability from the rich personal experiences of impairment, which made disability inadequate as a concept in postmodern identity politics centered on the body as a contested cultural terrain (32). Hughes and Paterson (1997) proposed not only to bring back the body/impairment experience into the cultural, symbolic space but also account for the multiple, individualized representations of pain and the oppressive societal/environmental factors. If the body enters the cultural realm in disability studies and movement, they argued, it can become a powerful ‘emancipatory’ concept.
This study drew on the WHO-ICF definition of disability whereby a person is considered disabled if and when his/her activity performances in his/her usual environment are limited in nature, function, or quality. This definition shifts the focus from individual factors measured in terms of medical or health indicators to broader factors that include health, education, social relationships and cultural participation. It treated disability in contrast to full functionality and both are “conceived as a dynamic interaction between health conditions (diseases, disorders, injuries, traumas, etc.) and contextual factors.” (33) In a way, such a definition draws on the complementary conceptualization of disability – with their own variations, of course – in the social model and the capabilities framework i.e., not only in understanding disability in terms of social/environmental barriers to equal opportunities and resources but also in identifying discrimination and oppression as central to its characterization (31). As such, this study recognizes all physical or learning and intellectual impairments that cause limited social functionality, opportunities and autonomy that are inconsistent with human dignity, equality and inclusion as disability.
Disability statistics, services and barriers. Using the definition of disability adopted in this study, the WHO and the World Bank (WB) estimated that about 80% of the global 1 billion persons with disabilities (PwDs) currently live in low and middle-income countries (1). In most of these countries, especially on the African continent, community attitude towards disability and persons with disabilities are less than penchant and socioeconomic support and rehabilitation services are poor or non-existent (40, 41). These challenges persisted, and the numbers of PwDs are increasing – both globally and in developing countries – due to population growth, man-made and natural disasters, war, accidents and aging.
In Ethiopia, data on the prevalence of disability is highly fragmented, or sometimes misleading and contradictory. For example, the 2007 Population and Housing Census reported the prevalence of disability to be 1.2%. Conversely, WHO estimates the national prevalence of disability in Ethiopia around 17% (1) The in-congruence between the two disability statistics could be due to several factors. The Census report was based on self-identification of household heads and members as being disabled or not, which generally underestimates prevalence rates due to stereotypes and stigma attached to disability (33). Furthermore, statistics on disability varies “according to the purpose and application of the data, the conception of disability, the aspects of disability examined, the definitions, question design, reporting sources, data collection methods, and expectations of functioning” (1). Many (34, 35) have reported skepticism about the Census statistics on disability in Ethiopia that could have been affected by “under-reporting, the way the Census questions were formulated, lack of disability awareness among enumerators and data managers and use of a narrow definition of disability”. In fact, there are reports that PwDs tend to avoid reporting their conditions due to negative community attitude towards disability and PwDs, which are prevalent in Ethiopia (34, 35, 39). In similar contexts, studies had identified institutional and cultural factors such as cost of treatment and stigma where there is significant underreporting (38). These reports show how Census reports actually underline the unreliability of statistics on PwDs in Ethiopia.
The significance of reliable disability statistics cannot be overstated. Having reliable statistics on disability informs better, policy making, planning and programming centered on inclusive and sustainable development. Data on the level of functioning in the population and the need for social and rehabilitation services will guide interventions to promote the equalization of opportunity and access to social resources such as education and health for PwDs. In recent years, national and global actors have used disability statistics to push the issue of disability to the center and front of policies, programming and service provision to ensure the effective inclusion of PwDs in development.
Empirical evidence on causes and impacts of disability on people are also relevant to prevention and rehabilitation policy making and programming. In Africa, studies identified the major causes of disability as communicable diseases, war, accidents, and inadequate prenatal and neonatal health-care services (36, 37). It has been reiterated that disability is strongly linked to underlying and basic problems of poverty, poor nutrition and restricted access to basic services such as health and schooling. These factors are also relevant to the Ethiopian context where the list of causes/factors include low standard of living, malnutrition, natural and man-made disasters, accidents, infectious and non-infectious diseases, intermittent wars and violence.
The challenges PwDs face – as we have noted above – emanate from unfavorable relationships between their impairments and their social environment. The outcomes of disability have more to do with the way disability is perceived and treated by communities than the degree and type of physical impairments. African communities harbor misconceptions that deter the inclusion of PwDs and expose them to debilitating stigma. For instance, traditional/rural African communities attribute impairments to such factors as supernatural forces – curse, demonic possession or wrath of god for a family’s mischiefs (42, 43). This scenario has, in turn, led to PwDs poor mental health and well-being.
But PwDs do not form a homogenous group. Despite inconsistencies, the literature and statistical reports on disability in Ethiopia identify mobility, visual and hearing impairments as the top-three most prevalent forms of disabilities, in that order. The prevalence and types have also been reported to be similar in North Gondar Administrative Zone of the Amhara National Regional State (ANRS), Ethiopia.
In addition to difference in the type of impairments (e.g., physical, psycho-social, sensory, intellectual, neurological), PwDs live in a variety of contexts with different intersecting identities. This includes gender, age, education status, employment and economic status, and, geographical location. How these contexts and different characteristics intersect lead to very different experiences of disability . In Ethiopia, for instance, about 46% of PwDs are women who carry the double burden of stigma, discrimination and other challenges due to patriarchy and misgivings about disability. Age is also a factor whereby children with disabilities (CwDs) are less likely to attend schooling or access healthcare services leaving them vulnerable to poverty and poor health that substantially reduce their quality of life [17, 18]. As a group, without underplaying these variations within however, PwDs are still among the most disadvantaged segment of the society.
With the understanding that disability statistics and surveillance are necessary to assess and examine trends and conditions of PwDs to inform policies, strategies and programming, this study aims at filling the existing knowledge gap on disability, mainly severe disability, its prevalence, types and causes in Ethiopia, specifically northwestern Ethiopia, and promote the effectiveness of services and interventions to meet the challenges of PwDs. It builds on the Dabat Health Surveillance System (DHSS) that the University of Gondar (UoG) established in 1995 to collect, organized and disseminate regular and up-to-date information on vital statistics – birth, death, migration and pregnancy - in Dabat district, northwestern Ethiopia. The justification for the DHSS lay in the relevance of up-to-date information on population to policy, planning and programming in all levels and sectors. But it included only one question on disability – “Are there members in the household with disability?” – which did not produce detailed information on degree, types and causes of disability.. It is against this backdrop that this study aims at assessing the prevalence, types and causes of severe disability in Dabat district employing a disability measurement tool adapted from WHO Disability Assessment Schedule (WHODAS