Persons with disabilities as experts-by experience: using personal narratives to affect community attitudes in Kilifi, Kenya

How a community views, understands and responds to disability is important to the everyday life of people who have disabilities. Cognitive maturity [1‐3], cultural beliefs and practices [4], information availability [5, 6] and exposure to people who have disabilities [7] are influential factors [8] . Childhood representations of disability tend to be negative and typically associated with an undesirable condition [9], resistant to parental influence and closely aligned to an individual or medical model, with attention given particularly to physical and biological factors [9, 10]. Federici et al. proposed that this was evidence of a ‘cognitive mechanism’ underlying the conceptualisation of disability [2]. As cognitive maturation occurs, there is engagement with alternative perspectives on disability [1‐3]. However, it was observed that parents resort to early mental representations in response to open-ended questions, as opposed to closed question responses that were aligned to the social model [1] .

Cultural learning is also important. Traditional beliefs have tended to associate disability with negative images and experiences [4], although some variations have been reported in East Africa, e.g., people with physical disabilities were perceived as pacifiers of evil spirits [4], while autistic spectrum conditions (ASCs) were attributed to evil spirits, witchcraft and curses [11]. Some of the distaste associated with disability in sub-Saharan Africa may lie in the cultural explanations that imply: breach of social conventions, e.g. in Botswana [12], Ghana [13], Kenya [14‐16], Tanzania [17], Malawi [18]; external, preternatural forces, e.g. in Kenya [14‐16], Namibia [17],; and the will of God [19‐22]. Negative and sometimes fearful images associated with disability, not only hinder acceptance of the person who has a disability, but also undermine possibilities and opportunities for the person [23]. Corrigan [24] and Corrigan & Watson [25] asserted the cognitive, affective and behavioural components of stigma, whereby people who share a particular characteristic that marks them out as different, e.g. an inability to walk, are cognitively appraised by others, leading to a possible negative emotional response and discrimination [26].

The question of how such stigma spreads across a community remains. Dipple et al. considered the relevance of ‘stigmergy’, a term originating from the French language, to the human world [27]. Thus stigmergy provides an explanation for the tendencies that exist within a community in their responses to persons with disabilities and their close family members. At its most extreme point, community responses to people with disabilities may descend into abuse, neglect and exploitation. For example, discriminatory practices reported in Nigeria [28] and Uganda [29] included physical, sexual and emotional violence, human trafficking, ritual killing and alms begging.

As a counter point, purposeful encounters with people who have disabilities appear to be critical to the formation of positive attitudes. Allport’s early ‘contact hypothesis’ proposed that increased interactions by one social group with another would promote more positive attitudes and decrease prejudice [30]. This has been borne out in studies of children’s attitudes towards disability [31, 32]. A systematic review of 35 studies revealed that children’s attitudes were positively associated with the social contact experienced with people who have disabilities [33]. This was corroborated in a more recent cross-sectional survey of over 1800 children, in which empathy for and underlying anxiety about interacting with people with disabilities were reported mediators of the contact-attitude link [34].

Disability awareness training often involves interacting with people who have disabilities, combined with activities that have a more cognitive focus, e.g. engaging with new information and participating in discussions that challenge stereotypes. By increasing exposure to the people who are the very objects of devaluation in a positive and informed way, previous evaluations may be challenged [35‐37]. Krahè & Altwasser [38] found that combining cognitive and behavioural activities, (where students took part in sporting activities led by Paralympic athletes), improved attitudes toward persons with physical disabilities. In direct contrast, no change was associated with the cognitive condition only and the control condition. Similarly, Papaioannou et al., used disability simulation in sports activities, some lectures and video presentations, to bring about positive change in attitudes [37]. A systematic review of interventions targeted at schools in Canada revealed shifts in attitudes and behaviours of the children associated with five basic approaches to disability awareness: (i) social contact; (ii) simulation; (iii) curriculum; (iv) multi-media curriculum; and (v) multiple components [39]. Documentary evidence of living with disability and discursive interactions were found to improve disability awareness in teenage boys in Australia [37]. In an epilepsy education programme conducted on the Kenyan coast to reduce the treatment gap, traditional songs with positive depictions of epilepsy were used to change community perceptions and to promote new understanding [40].

Disability awareness training features in the ‘empowerment’ component of the Community-Based Rehabilitation (CBR)/Inclusive Development guidelines, which cuts across the other four components of health, education, livelihood and social [41]. However, there is a dearth of evidence for CBR initiatives generally, with published studies being criticised for a lack of research rigour, and for being overly descriptive or theory-based [42]. In their recent Systematic Review, Lemmi et al. [43] focused on assessed impact. Modest benefits were suggested for people with mental disabilities and their caregivers, although the authors acknowledge ‘methodological constraints’ (p.6) in the studies. More recently, consultations on how best to address the evaluation of CBR have favoured a flexible and iterative approach [44].

Based on the evidence that personal encounters with people living with disability have positive influence, and in harmony with the recommendations of the CBR guidelines, a project was set up to engage neighbourhood communities in a process of reflection and education. The first aspect - reflection, focused on community beliefs about disability causation and the attendant challenges [14]. The current paper reports on the second aspect – education. The aim was to develop and evaluate the effects of a disability awareness intervention on the values, perceptions and understanding of community groups in a rural part of Kenya. The research question was: How do personal narratives of ‘experts by experience’, i.e. persons with disabilities, affect the perceptions, values and understanding of community groups?

With reference to Creswell et al.’s description, a phenomenological approach was adopted [45]. Thematic analysis of focus group discussions data was conducted before and after a disability awareness intervention.

The setting was Kilifi County, one of the poorest areas in Kenya, with a poverty level of 71% [46]. Situated on the Indian Ocean coast it covers a large rural area where subsistence farming dominates. Characteristics of the region include low levels of nutrition, inadequate control of infectious diseases, poor enrolment in schools, limited literacy amongst adults generally and unreliable rainfall. Typical dwellings are of mud construction with a thatched or iron sheet roof, no power supply or running water. Per capita, the average income for a household (typically parents plus six children) is Ksh1, 000 per month – less than $13 USD [46]. Languages spoken include Mijikenda and Swahili. Christianity is observed by about 70% of the people, traditional religious practices by 20% and Islam by about 10%. Based on a county-wide population of 1,109,735 and using a 15% prevalence of disability [46], it is estimated there were 166,460 people with disabilities in Kilifi County.

The emergent framework consisted of four organising themes: Burden; Agency; Sub-human; Human. They were arranged as pairs of opposing constructs along a continuum (A. to B.), i.e. burden vs agency; sub-human vs human as shown in Fig. 2 which captured the possibility of movement between them. Subordinate constructs were identified at lower levels of each main construct pair, as indicated by filled bullet points. Only the sub-human vs human construct was further sub-divided into opposing pairs of basic themes, as indicated by unfilled bullet points.

With reference to the framework in Fig. 2, the results are presented in a series of tables. Each table focuses on a different pair of subordinate constructs, labelled in the side margins of the table, from within an organising pair of constructs (labelled at the top of the table). Basic themes are shown in Tables 3 and 4 only (Sub-human vs Human) indicated by unfilled bullet points within a column, where data from pre- and post-intervention are presented. Immediately after each quote, the source is given in square brackets, i.e. the group type and participant number, and the pre- or post-intervention status indicated by − 1 or − 2 respectively.

Occurring mainly in pre-intervention group discussions, dominance of negative images and the use of language that tended to focus on the physical or visible characteristics of disability were suggestive of the individual or medical model [9]. The open-ended questions asked of the groups may have triggered access to early mental representations of disability that were formed in childhood as suggested by Federici, Meloni and colleagues [1, 2]. This would imply the presence of an underlying cognitive process at work [2]. In seeking to formulate a clear and consistent response to the disability focused questions, the respondents resorted to the most immediate explanation available in their mental lexicon [1]. The models act as reference points, which inform the development of social responses and relations [1]. In the absence of a more social representation of disability, the respondents have attributed disability to deviation from more typical biomedical structures and functions [9, 10].

Cultural beliefs and traditional practices have been commonly associated with negative images [12, 15‐18] and concepts that inspire fear in others [4]. Thus the explanations of disability that were espoused by members of this East African community, e.g. preternatural forces [12, 15‐19], may have shaped the images of abnormality and dysfunction that featured in the groups’ discussions. As suggested by Meloni et al. [1], the polarisation of the individual/medical and social models is more a product of culture than cognition, which infers a learning process. Inadequate coverage of information about disability across rural communities [5, 6] means that alternative models or ways of understanding disability may not have been available. Thus, it could be said that the cultural construction of disability upheld the idea of the individual model, at least in part, by viewing disability as a direct consequence of a supernatural event [15‐18]. In contrast, breach of social conventions [14, 17] placed responsibility on the actions of other people, and therefore deflected the focus from the child to the setting. Ultimately, however, the individual was still viewed as different to most people.

Many of the stories of people with disabilities spoken about in the focus groups, particularly pre-intervention, yielded images that portrayed children and adults with disabilities as undesirable or associated with an unpleasant encounter, which affected the extent to which the person was accepted by the community [24‐26]. There was some distancing of the person with a disability through the language used to describe individuals. Use of inanimate linguistic objects to describe people with disabilities, e.g. words belonging to the KI-VI class of nouns in the Swahili language such as “kiwete” which has a plural of “viwete” (cripple-cripples), rendered the person as an object. Thus disabilities were viewed as entities, devoid of human life. There was the added tendency to describe a lack, or total absence of ability. This finds resonance in the reification/recognition dichotomy explored by the German philosopher Axel Honneth [50]. He highlighted the human tendency to treat other people as mere objects (reification) instead of responding to them as individuals who are more than just things (recognition). The propensity to abuse vulnerable individuals springs partly from this tendency. However, we also have the capacity to recognize others, which was evident in some of the accounts of persons with disabilities who were known to the respondents, and emphasized in the post-intervention data.

Encountering experts-by-experience who shared their personal narratives, appears to have triggered a reassessment of the meanings associated with disability [32‐37]. Confronted with the experiences of people living with disability, the groups developed stronger recognition of the person who has a disability. According to Honneth, this is a prerequisite for empathy [50], and certainly the post-intervention discussions revealed the expression of empathetic views. There was also greater emphasis placed on the agency of persons with disabilities in terms of abilities and facilitating actions by others, and on being human in terms of recognition and inclusion. Allport’s ‘contact hypothesis’ attributes these changes to the deliberate interactions with people living with disabilities [32], which corroborates the findings of Armstrong et al. [34, 35], MacMillan et al. [32], and Schwab [34]. The deliberate exposure of the groups to people with disabilities, who were the frequent subjects of negative images and devaluation, challenged the stereotypical views of persons perceived to be a burden and the ‘objects’ of dehumanizing practice [36‐38]. This resonates the findings of other studies that have promoted encounters with people with disabilities in pursuit of attitudinal change [36‐39]. Post-intervention, there was a general realization that people with disabilities needed love and respect, just like other human beings. The stories by the experts-by-experience caused many participants to shed tears, and to express new insights into the experiences of people with disabilities, which were commensurate with empathy. The call to act on this new knowledge was shared by many of the groups, who sought to sensitize the community and employ experts-by-experience themselves to affect positive change in their communities.

The research contributes to the evidence on CBR, demonstrating the potential of a low-cost, relatively brief intervention, which may be applicable in other low-income settings. The very act of employing people with disabilities assigns them a higher status as ‘experts-by-experience’, which is in opposition to the more familiar ‘discounted’ role seen in many communities. The participants wanted the experts to have the same opportunities as others, which extended to being married and having their own home.

The sharing of life experiences through organized community engagement, appears to have facilitated community groups to reflect on, examine and adjust their attitudes towards people with disabilities. The personal narratives served to authenticate the process of learning by the community groups. Listening to and interacting with the experts-by-experience invited the participants to reflect on their own values, against a backdrop of deeply held cultural beliefs and practices. The personal stories guided the participants in viewing the ‘person’ before the ‘disability’. This appeared to be a catalyst for change, both in the attitudes espoused, and in the motivations expressed by the groups. For example, the groups articulated a shared quest to achieve better understanding of disability and to reach more people in their communities. Ultimately, the findings from the current study have implications for mobilizing DPOs, parent or caregiver groups and other rights-based organizations as agents for change in local communities. In this way, a new type of ‘stygmergy’ [28] may be triggered by engaging with the lived experiences of people with disabilities – one that revises the view from the community bringing about recognition of the person - who just happens to have a disability.