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Cultural narratives on disability have received much attention over the past few decades. In contexts of poverty, limited information and everyday challenges associated with having, or caring for someone with a disability, different understandings have emerged. A project was set up to promote disability awareness in neighborhood communities in a rural part of Kenya, using a process of reflection and education. This paper reports on the first aspect–reflection. The aim was to investigate local understanding of disability as a co-constructed concept. The research questions were: 1. What cultural beliefs shape local understanding of disability? 2. What challenges are perceived to be associated with disability? A phenomenological approach was adopted. Focus group discussions were conducted with twenty-one community groups involving 263 participants and audio-recorded. The data were transcribed and thematic analysis was carried out. Visual maps were created to illustrate any interconnections, before establishing the final conclusions. Local beliefs attributed disability to: human transgression of social conventions, particularly concerning inappropriate family relations, which invoked a curse; supernatural forces affecting the child; the will of God; unexplained events; and biomedical factors. Challenges associated with disability related to the burden of caregiving and perceived barriers to inclusion, with stress as a shared bi-product. Local understanding of disability in this rural part of Kenya demonstrated overlapping explanations and plurality of beliefs. Two possible interpretations are offered. Firstly, oscillation between explanatory lines demonstrated instability, affecting broader acceptance of disability. Secondly, and more positively, in the face of challenges, the desire to make sense of the existing situation, reflected a healthy pluralism.
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RESEARCH ARTICLE
The perception of disability by community
groups: Stories of local understanding, beliefs
and challenges in a rural part of Kenya
Karen Bunning
1
*, Joseph K. Gona
2
, Charles R. Newton
2,3
, Sally Hartley
1,4
1School of Health Sciences, University of East Anglia, Norwich, United Kingdom, 2Centre for Geographic
Medicine Research (Coast), Kenya Medical Research Institute, Kilifi, Kenya, 3Department of Psychiatry,
University of Oxford, Oxford, United Kingdom, 4London School of Hygiene and Tropical Medicine London,
United Kingdom
*k.bunning@uea.ac.uk
Abstract
Cultural narratives on disability have received much attention over the past few decades. In
contexts of poverty, limited information and everyday challenges associated with having, or
caring for someone with a disability, different understandings have emerged. A project was
set up to promote disability awareness in neighborhood communities in a rural part of
Kenya, using a process of reflection and education. This paper reports on the first aspect–
reflection. The aim was to investigate local understanding of disability as a co-constructed
concept. The research questions were: 1. What cultural beliefs shape local understanding of
disability? 2. What challenges are perceived to be associated with disability? A phenomeno-
logical approach was adopted. Focus group discussions were conducted with twenty-one
community groups involving 263 participants and audio-recorded. The data were tran-
scribed and thematic analysis was carried out. Visual maps were created to illustrate any
interconnections, before establishing the final conclusions. Local beliefs attributed disability
to: human transgression of social conventions, particularly concerning inappropriate family
relations, which invoked a curse; supernatural forces affecting the child; the will of God;
unexplained events; and biomedical factors. Challenges associated with disability related to
the burden of caregiving and perceived barriers to inclusion, with stress as a shared bi-prod-
uct. Local understanding of disability in this rural part of Kenya demonstrated overlapping
explanations and plurality of beliefs. Two possible interpretations are offered. Firstly, oscilla-
tion between explanatory lines demonstrated instability, affecting broader acceptance of dis-
ability. Secondly, and more positively, in the face of challenges, the desire to make sense of
the existing situation, reflected a healthy pluralism.
Introduction
Information on the causes of childhood disability is not widely available across communities
in low-income countries [1]. Limited support services and poor access to knowledge may be
PLOS ONE | https://doi.org/10.1371/journal.pone.0182214 August 3, 2017 1 / 20
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OPEN ACCESS
Citation: Bunning K, Gona JK, Newton CR, Hartley
S (2017) The perception of disability by community
groups: Stories of local understanding, beliefs and
challenges in a rural part of Kenya. PLoS ONE 12
(8): e0182214. https://doi.org/10.1371/journal.
pone.0182214
Editor: Stefano Federici, Universita degli Studi di
Perugia, ITALY
Received: March 28, 2017
Accepted: July 16, 2017
Published: August 3, 2017
Copyright: ©2017 Bunning et al. This is an open
access article distributed under the terms of the
Creative Commons Attribution License, which
permits unrestricted use, distribution, and
reproduction in any medium, provided the original
author and source are credited.
Data Availability Statement: Data are not freely
available because of the terms for data sharing
included in the consent forms for this study. For
anyone interested in accessing the data, they can
write to the Data Governance Committee of the
KEMRI Wellcome Trust Research programme who
will review the application and advise and ensure
that uses are compatible with the consent obtained
from participants for data collection in this study.
Requests can be sent to the coordinator of the Data
Governance Committee on
contributing factors [23]. Communal narratives have emerged to explain the presence of dis-
ability. Underpinned by cultural belief systems [4], such explanations affect, not only the ways
individuals with disabilities view themselves, but also the responses of others [5]. Bronfenbren-
ner’s ecological systems theory defined humans as both a ‘culture-producing species’ and ‘culture
produced’ (p.123) [6]. Hence communal narratives, developed in response to the circumstances
of disability, may also affect social behaviours and practices. The importance of this dynamic
interaction between the person and their environment is now emphasised and enshrined in the
World Health Organisation’s biopsychosocial model of disability in the International Classifica-
tion of Functioning and disability (ICF) [78]. In a move away from the earlier medical model,
which located the ‘problem’ with the individual, and in recognition of the disabling/enabling
role played by the environment, as captured in the social model [910], the ICF highlights the
bi-directional influences that exist between the person and context. Thus the environment and
members of the community have the facility to promote or constrain the abilities, rights and
needs of persons living with disability.
Cultural beliefs
The extent to which culture is a factor in people’s understanding of disability appears to be
mediated by the individual’s exposure to people with different disabilities [1115]. The amount
of time and the immediacy of the contact, i.e. in person, were identified as critical factors in
the positive attitudes evinced by children [1114], and physiotherapy students [15]. Allport
hypothesised that face to face interactions would have a positive effect on the attitudes of one
social group for another [16]. The degree of cognitive maturation is also relevant here [1719].
Children’s early conceptualisation was found to be consistent with an individual or medical
view of disability, characterised by physical and biological factors, and associated with negative
and unpleasant experiences [1719]. Whilst parental understanding of disability was found to
be more closely aligned to a social model when given closed response choices, open-ended
questions triggered a response based on the most immediate mental representation [17]. Fed-
erici et al. [18] suggested that this was evidence of ‘a cognitive mechanism underpinning the
cultural construction of the individual/medical model of disability’ (p.7). However, as matura-
tion takes place, cognitive growth appears to open the individual to learning about alternative
explanations and views of disability [1719]. This is where real-life encounters with people
who have disabilities and cultural transmission of understanding attain relevance.
Locally-held beliefs about the causes of disability in low-income countries were categorised
broadly in an earlier paper by Ingstad [20], as attributable to: “Others”; “Oneself”; and “Fate,
nature or the will of God”. Although variations in narratives have been observed [21], some
resonate across sub-Saharan Africa. “Others” as an explanatory source may attribute a child’s
condition to an external force, such as a curse or evil spirits (‘jinnies’) as reported in Malawi
[2], Namibia [22], Tanzania [23], and Kenya [2426]. “Oneself” implies responsibility for a
wrong-doing resulting in disability. For example, angering ancestors by breach of moral code
or failing to honour their memory. Improper family relations, including extra-marital affairs
and incestuous relationships have been cited as perceived causes of disability with the mothers
generally implicated, e.g. in Botswana [27], Ghana [28], Kenya [2526], Namibia [22], Tanza-
nia [23] and Zimbabwe [2930]. Ingstad [20] suggested that such stories may be related to
social control and the need to adhere to social conventions and moral codes, for example,
being chaste in a marriage. However, “Oneself” and “Others’ are not necessarily mutually
exclusive. Improper relations attributed to “Oneself”, may trigger a curse affecting the child’s
well-being, thereby implicating “Others” as well. For example, it was reported that some Yor-
uba people believe that atypical developmental conditions are the result of a curse brought
The perception of disability in rural Kenya
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Data_Governance_Committee@kemriwellcome.
org.
Funding: The project is supported by the CP Trust.
Charles Newton is Wellcome-funded. Finally, we
would like to acknowledge the support of KEMRI in
funding the open-access publication.
Competing interests: The authors have declared
that no competing interests exist.
about by the defiance of a pregnant woman who walks outside at midday or midnight, or rep-
resent a punishment for wrongdoings, such as conducting an extra- marital affair [31]. Some-
times “Oneself” and “Others” combine, as in the causal explanation of albinism in Namibia,
where the mother was accused of having had sex with a white man or a ghost [22]. In contrast,
Otte et al’s study in Guinea-Bissau, reported quite separate explanations of epilepsy, where
over half the respondents with the condition viewed it as caused by evil spirits, with a relative
minority viewing it as punishment for a wrongdoing [32].
Ingstad’s last category “Fate, nature, or the will of God” captured the possibility of an unex-
plained, unplanned circumstance [20]. Theological explanations appear to offer both a positive
interpretation (e.g. gift from God) as well as a negative one (e.g. punishment from God).
Accordingly, the ascription of different religious meanings has served to justify the challenges
of caring for the child [30,33], implying acceptance and adaptability, or conversely, guilt and
insecurity [34]. Such beliefs have been used to rationalise aspects of daily life as part of ‘God’s
plan’ [35], with the power of prayer used to address the individual’s problems. Conversely, a
more punitive God has been associated with spiritual discontent, with God’s powers connected
to punishment [35].
The plurality of explanatory sources used in Eastern Africa has been referred to as “a melt-
ing pot of beliefs” (p.394) [36]. For example, respondents at a special school in Tanzania drew
on the dominant religions of Christianity and Islam to explain disability, whilst also consider-
ing the role of traditional healers [23]. A similar situation was found in Turkana, Kenya where
caregivers expressed multiple parallel views [37]. Not restricted to the African continent, the
mixing of belief systems was observed in Cambodian parents of children with cerebral palsy
who incorporated their Buddhist beliefs into biomedical and traditional explanations [38]. The
drive for answers and improvements in the existing situation may trigger changing allegiances
to belief systems [23], such that when one explanation and its associated response course fails,
there may be a shift to an alternative source of explanation and action.
Challenges
In the context of a resource-poor country, where the lives of the majority of citizens are charac-
terised by a reduced standard of living and minimal support compared to high-income coun-
tries [39], the challenges encountered by people with disabilities are shared by non-disabled
individuals [3940]. This includes poor access to health provision [41], low school attendance
[4243], limited employment rates and low wages [44]. In Africa alone, less than 10% of chil-
dren with disabilities were reported as attending school [45].
According to Eide and Ingstad the broader conditions of poverty may affect social relations,
attitudes, communal beliefs and behaviours towards persons with disability [46]. The way
members of a community respond has implications for those closest to the individual, particu-
larly those in caregiver roles. Referred to as ‘courtesy stigma’ [47], and more recently ‘affiliate
stigma’ [48], this is the experience of social stigma by association. This compounds the physi-
cal, psychological, temporal and financial stresses of the caregiver [2426,4951].
More extreme consequences of stigma and discrimination include neglect and abuse. Sex-
ual abuse has been reported to occur at some time in the lives of 90% of the population with
intellectual disabilities [52]. Individuals with communication difficulties were recognised to be
at increased risk [53], due to difficulties in reporting abusive incidents to others [5455].
Adults with disabilities in Malawi disclosed sexual abuse in relation to forced marriages with
later abandonment by a marital partner [55]. Family maltreatment of individuals with epilepsy
was linked to the perceived disgrace of behaviours associated with convulsive epileptic seizure,
such as loss of consciousness, incontinence and myoclonic jerks [32]. However, caregiver
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actions that are perceived to be negative may be underpinned by more altruistic motives. The
Kenya-based CNN documentary, ‘Locked Up and Forgotten’ showed how many children with
disabilities were kept apart from the local community in restricted environments, to protect
them from the abuses of others and to keep them safe [56]. Whether motivated by negative or
positive attitudes, such actions result in the exclusion of people with disabilities from the same
places, opportunities and social groupings as other members of the community.
This project was set up to promote disability awareness in neighbourhood communities in
a rural part of Kenya. The over-arching aim was to engage people in a process of reflection and
education. This paper reports on the first aspect–reflection, which investigated local under-
standing of disability as a co-constructed concept. The research questions were:
1. What cultural beliefs and knowledge shape local understanding of disability?
2. What challenges are perceived to be associated with disability?
Materials and methods
To capture the commonly held views and experiences of the community, the research adopted
a phenomenological approach with reference to Creswell et al’s description [57].
The setting was Kilifi County, situated on the Indian Ocean coast. The inhabitants were
mainly from the Mijikenda groups (about 80%) and spoke Giriama, Chonyi, and Swahili.
Christianity was observed by about 70% of the people, traditional religious practices by 20%
and Islam by about 10%. Kilifi was among the poorest areas in Kenya, with a poverty level of
71% (Kenya Commission on Revenue Allocation). Most of the rural population live as subsis-
tence farmers, with dwellings of mud construction, and consisting of one or two rooms, no
power supply or running water. Per capita, the average income for a household (typically
parents plus six children) was Ksh1,000 per month–less than $13 USD [58]. There were low
levels of nutrition, inadequate control of infectious diseases, poor enrolment in schools and
limited literacy amongst adults generally. Based on a county-wide population of 1,109,735 and
using a 15% prevalence of disability [59], it was estimated there were 166,460 people with dis-
abilities in Kilifi County. Therefore, it was envisaged that most people would have experience
of people with disabilities in their extended families and communities.
Ethics
The study was approved by the Scientific Ethics and Review Unit (SERU) in Nairobi Kenya
(SSC #1996) and the International Development ethics committee at the University of East
Anglia, UK.
Sample
For expedient recruitment of participants within the timescale, it was decided to focus on
established community groups. Locally situated, the groups were considered to be natural and
familiar settings for people to come together. The sample was comprised of 21 community
groups (263 participants in total) across the five constituencies in Kilifi County. Already con-
stituted, the groups provided a useful entry point to the wider communities. Inclusion of the
groups was determined by their: formal organization as community health worker (CHW)
groups or Women’s Groups (WG), the former being linked with a health facility [60] and the
latter being registered with the Women Microfinance Trust (KWFT) [61]; and their active
status with a minimum of once monthly meetings scheduled. The aim was to recruit 4–5
groups per constituency to achieve a cross-section of community groups in the county. A
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community-based organization called Pambazuko Disability Initiative identified groups who
met the selection criteria above, and arranged an initial meeting when project information was
disseminated both orally and in paper format. Informed consent was recorded for each group
member on a prepared form by participant signature or thumbprint.
There were eleven CHW groups and ten WGs. The CHW groups had a mainly voluntary
membership of men and women, ranging from 20–50 years, who came together to assist the
government-funded, local health provision. They were recruited by the county public health
team and trained in basic health care, although this was reported to be minimal. The WGs
were comprised of women only whose membership was voluntary. Their ages ranged from
24–65 years. They were supported by the KWFT, a non-government funded organisation and
saved the group’s money in shares, servicing loans to individuals to improve quality of life
[61].
Data collection
Focus groups were carried out with each community group. In order to capture the popular
stories in a community, the bringing of people together in a focus group discussion was con-
sidered a suitable approach; one that would support review of individual contributions and
invite shared recognition of the familiar explanations for disability within the community. The
representative from Pambazuko was well known to the community groups. In correspondence
with each group’s Chair, she arranged the meetings where the focus group discussions would
take place, e.g. at health centres, churches and in classrooms, and arranged the delivery of
refreshments. The meetings were opened by the Chair and usually started with a group prayer.
The discussion was then introduced by the second author who was a native of the area and
proficient in the local languages–Swahili, Giriama and Chonyi. The Pambazuko representative
was present at all the meetings.
Participants were encouraged to talk about their experiences of individuals with disabilities
residing in their own communities. A discussion guide was followed with each group. Initially,
participants were invited to reflect on and share their real-life encounters with people with dis-
abilities. This included living alongside and communicating with such individuals. Then the
discussion moved to the causes of disability and problems in communication. Specific men-
tion of ‘communication’ was to support the inclusion of deafness, and its associated impacts,
in the groups’ reflections. Finally, the participants were asked what the community could do in
response.
The median attendance was 13, with a range of 8–17 participants present at the 21 focus
group meetings. Discussions were carried out in the group’s preferred language and recorded
on a digital audio device. Using the topic guide, open-ended questions were addressed to the
whole group initially and the members were invited to contribute their views and ideas. After
the first contributions by members, the questions were re-offered to others in the group in
order that conversation floor was shared as equitably as possible. Probes were inserted by the
researcher to encourage clarification or topic extension. Once the current discussion appeared
to be waning, the next topic would be introduced. On average the discussions took 50 minutes
with a few meetings taking over one hour.
The recordings were uploaded to a computer and transcribed by the second author, a native
of the area who was conversant in the local languages. The data were transcribed in the local
language used in the original discussion, before translation into English. The data were then
imported to the data management programme NVivo 10. Throughout the analysis period,
checks were carried out on the translation to ensure accurate representation of meanings. This
involved an iterative process whereby the first author (native English speaker, UK-based) and
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the second author reviewed the transcripts, queried emergent concepts and their meanings,
using back translation as appropriate.
Data analysis
Firstly, thematic analysis [62] was used to identify patterns within the data and any intercon-
nections. Initially, the first and second authors analysed the data independently of each other.
The transcripts were read in their entirety to establish familiarity with the discourse. Key ideas
and concepts were identified and recorded in note form at this stage. This informed the identi-
fication of recurrent themes for the creation of a first generation of ‘nodes’ (basic themes)
using NVivo-10. The transcripts were reviewed and relevant excerpts were assigned to the
‘nodes’, including a reference to the transcript source. The content of each node was then
reviewed and adjustments made to the categorisation as required. Next the ‘themes’ were
reviewed for interconnections and grouped under ‘organising’ themes.
The researchers inspected the commonalities and differences in their separate analyses at
the levels of basic and organising themes. The second author was able to draw on his back-
ground and experience of growing up in this part of Kenya, such that complex local expla-
nations of disability could be unravelled. The other, a UK-based visitor to Kenya for the
purposes of disability-focused research, who had accrued some experience in this setting
since 2007, contributed a more remote stance, which enabled translations and concepts to
be queried and explored in depth. Once consensus on the categories and their labels was
achieved at the levels of basic and organising themes, a thematic map was generated. The
themes that emerged in relation to research question 1, were resonant of Ingstad’s catego-
ries, and it was therefore decided to use Ingstad’s three categories as organising themes, as
far as possible (Onself,Others and Fate,Nature or the will of God) [20]. Data that were con-
sidered unrelated to Ingstad’s categories but still addressed the research question, were
grouped according to homogeneity, suitably labelled and added to the thematic map. Lastly,
a critical review of possible interconnections at the levels of basic and organising themes
was undertaken.
Results
Local understanding of disability
Fig 1 illustrates ‘Local Understanding’ through uni-directional arrows connecting the themes,
left to right, from organising themes to basic themes relating to ‘Child Disability’. Whilst
Ingstad’s categories of cultural belief, represented by italicised titles, were identifiable in the
data, they were neither mutually exclusive nor exhaustive. The category Oneself expressed as
‘Inappropriate relations’ was said to bring forth a curse issued through ‘Witchcraft’, which was
attributable to Others. Additionally, some beliefs corresponded to more than one category as
indicated by arrows with dashed lines. A fourth category was added to Ingstad’s three original
categories, Biological, which is indicated by an asterisk before the box title.
Oneself. More than any other perceived cause of childhood disability, attribution to One-
self was supported by the local Giriama culture. The parents, often the mother, were impli-
cated. This was expressed as ‘Inappropriate relations’ or what was referred to as “mixing in the
family”, which appeared to be connected closely to family/community values and the flouting
of social conventions:
“Disability results from lack of cultural observations; like committing adultery with people
in the homestead.” [CHW9]
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The perceived improper relations were considered to bring forth a ‘curse’, which affected
the perpetrator through the child. Thus belief in an external force responsible for issuing the
curse was also implicated, i.e. Others. Particular words were reserved for the type of improper
relations, although word definitions often seemed to overlap and were used inter-changeably.
For example, “mavingane”, “chirwa” and “vitio” were used variously to imply that extra-mari-
tal relations had taken place with another family member:
“you will be told that you slept with your younger brother-in-law that is why your child is
like this—that is vitio.” [CHW6]
“Mavingane” was also used to refer to adultery. Similarly, “kitio” described improper sexual
behaviour in the homestead. In such circumstances, it was common to blame the mother. One
respondent explained that the mothers attending the child’s birth would be the first to accuse,
upon sight of a newly born child with a disability. The father was said to be implicated ‘second’
or where the innocence of the mother had been proven. However, the word ‘chirwa’ was used
to capture the negative effect of the husband’s unfaithfulness during the gestational period.
The father’s touch was regarded as tainted with the power to affect the child.
Fig 1. Thematic map summarising local understanding of childhood disability.
https://doi.org/10.1371/journal.pone.0182214.g001
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. . . when a pregnant mother gives birth to her baby and during that period the husband
cheats on the wife and the father comes back and touches the child. . . [WG8]
Distinguishing features of disability were described with mention of “humps”, “curved
limbs” and “sickness” often associated with different types of transgression. ‘Inappropriate
relations’ also extended to sickness in the child and was associated with malnourishment,
changes to the skin and general failure to thrive. The gender of the offending parent was some-
times considered relevant also:
. . . if it is the father the child crosses the legs and if it is the mother the skin develops wrin-
kles and stretches his or herself.” [WG9]
“If it is the mother the right leg curves and if it is the father the left one curves.” [CHW6]
The misplacement of household items was also associated with ‘inappropriate relations’.
There was mention of (bed) “mats” and “washing” (lines) among the various physical signs pur-
ported to bring forth “mavingane”, such as the tying of a rope from the mother’s house to that of
the father-in-law for hanging out the washing, and disordered cooking stones. Whether these
were believed to be signs that extra-marital relations were taking place, or actual factors in the
advent of disability was not clear. It is possible that the narratives contained a cautionary note by
recommending against particular actions, which might contravene certain social conventions:
. . . you cannot take the mother-in-laws mat and sleep on it or the daughter-in-law gives it
to the mother-in-law. . . [CHW5]
Interestingly, improper behaviour towards someone with a disability was also perceived as
capable of bringing forth a curse that would affect an unborn child. This was recognition of a
different type of transgression. For example, laughing at someone because of their appearance
was thought to affect the perpetrator’s own offspring eventually. One story told of a woman
who laughed at someone with restricted growth and was told by the person that:
“if the baby she was carrying on her back was the last one then he will be tall but if she was
still giving birth to more children then she will laugh a lot at home. . . she gave birth to three
dwarfs.” [WG1]
Others. As implicated in the narrative of Oneself through the issue of a curse, Others con-
veyed the sense of an external force that was in some way responsible for the child’s condition.
Fig 1 illustrates how Others was expressed through the themes of: ‘Witchcraft’; Demons & evil
spirits’; and ‘Natural elements’. The actions of witchcraft were invoked in the circumstance of
offence by others. A curse or spell was cast as retribution for a past transgression, with disabil-
ity viewed as the negative consequence.
. . . other people can put a spell on the Mother or in that family, so when the parents give
birth they give birth to helpless children. . . the child instead gives trouble to the parents.”
[CHW2]
However, this did not exclude the possibility of other causes. For example, it was recognised
that certain types of disability may be attributable to sickness or unexplained reasons, whilst
others to a preternatural power:
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“There is disability . . . that one is born with and there is another that one gets through sick-
ness and there is another through witchcraft. . . [CHW7]
‘Demons & evil spirits’ dominated group views of disability causation. The cause of disabil-
ity was explained by an external force. The person with a disability was sometimes described as
having been placed under or on a seat for demons or ghosts. Explanations not only defined the
external, supernatural force in disability causation, but also identified concomitant physical
symptoms and financial gains. Mention of drooling (dripping saliva) by the individual with a
disability was sometimes related to the perceived wealth of a parent, often the father, or
another person. Thus disability in one person appeared to be explained by suspect financial
gain in a relative.
. . . the work that the child does is just to sit there while the saliva is dripping; he is just in a
terrible condition while the father there has a lot of money.’ [CHW5]
The phrase “borrowing the pregnancy” was used to describe how the parents would have
visited a shrine to help them have a baby. In this circumstance, references were made to mythi-
cal creatures and evil spirits:
. . .others who are also born . . . cannot be understood if they are human or animal-like . . .
because the pregnancy was forced. They went and borrowed it from the ogres.” [CHW10]
Less frequent reference was made to the ‘Natural elements’, specifically the influence of the
moon and sea, which was used principally to rationalise the occurrence of epileptic seizures.
Fate, nature or will of God. The Will of God as per Ingstad’s categorisation [15], inter-
preted disability as part of ‘God’s plan’. However, it could also be said to be attributable to Oth-
ers; although a more philosophical stance was implied, which was associated with acceptance
and recognition of fate or nature. This contrasted with the more negative themes in the Others
category:
“I think he was born like that because the father and the mother are fine. So I think God cre-
ated him like that.” [WG2]
Such beliefs appeared to satisfy not only an explanation for and acceptance of the child’s
condition, but also provided a source of hope that things would change for the better. Stories
were told of miracles whereby a disability was somehow cured:
. . .he was disabled and the mother looked for help from everywhere she gave up and left it
in the hands of the Lord. She stayed one day only, the next day he was walking by himself
and everybody was amazed.” [WG4]
Relating to Fate and Nature, there was recognition that some babies were “born like that”,
which included the “unexplained”. It appeared there was an overlap with the fourth category,
Biological, which was added to Ingstad’s three. Acceptance of the child’s condition or the
notion that some events were beyond human control, appeared to be implicit in this interpre-
tation. This represented a direct counterpoint to cultural beliefs focusing on Oneself and
Others.
“You can get out of your mother’s womb as a disabled child.” [WG4].
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Biological. As well as accounting for the ‘unexplained’, Biological attribution defined tan-
gible events or biomedical circumstances that were likely responsible for an individual’s condi-
tion. It was expressed in three key areas as illustrated in Fig 1: ‘Pre-natal’; ‘Peri-natal’; ‘Post-
natal’.
‘Inherited’ conditions’ were mentioned sparingly, where a family history or a grandparent
with a similar problem was proffered as an explanation for occurrence in a later generation.
Maternal well-being issues regarding antenatal care were more frequently mentioned, but
maternal age was implicated in a single reference to the menopause. Certain conditions or
actions were observed to be counter to a safe pregnancy and implicated Oneself, such as the
mother being infected by a sexually transmitted disease or taking drugs, massaging the stom-
ach or sexual relations with the husband during confinement.
. . . the parents did not relax concerning matters of the bedroom that is why the child
became blind.” [CHW4]
The mother’s health and nutritional level were recognised as important to the baby’s well-
being, alongside the role of medical services in maintaining the mother’s health during preg-
nancy. A lack of attention to antenatal care was viewed as a possible reason for a child to be
born disabled.
. . . there are those of us who never visit the hospital throughout the entire period of preg-
nancy you might find that the child maybe born disabled.” [WG1]
Family planning, particularly the use of contraceptive pills, was viewed with suspicion by
some respondents and considered responsible for a child born with:
. . . no senses’ or . . . without eyes” [WG8]
Stories were told of “attempted home abortion” using some form of medicine that was not
successful and instead affected the baby:
. . . she wanted to abort the baby . . . used drugs but by bad luck the pregnancy did not
come out, but when she gave birth to the child the time had not yet arrived and the child
was terrible because one of the hands was clawed and the leg was a half.” [CHW6]
‘Birth complications’ focused on difficulties in breathing during or after birth. There was
also mention of twisting of strangulation by the umbilical cord, placental difficulties causing
bleeds, and ingestion of liquid variously affecting the unborn child. Birth struggles and the
need for help during delivery were also cited causes.
Post-natally, a range of ‘infections and illnesses’ was identified including malaria, polio, yel-
low fever and febrile convulsions. Inadequate vaccination was seen as the cause, with delayed
or lack of treatment a possible factor in any resulting disability:
. . . some of the children I have seen, were infected with malaria, and when they get treat-
ment it is okay, but when they miss treatment quickly, they get disabled.” [WG9]
Epilepsy was said to have developed as a later consequence of some forms of illness. The
respondents described the development of sores and boils on the child’s body and the disabling
The perception of disability in rural Kenya
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consequences that were observed. Stroke as a source of disability was mentioned in relation to
blood pressure problems in adults. ‘Accidents’, mainly transport related, were viewed solely as
affecting adults, and referred to the loss of a limb and altered motor function as possible conse-
quences. Of concern was the negative effect on the person’s ability to work. However, no men-
tion was made of other impacts that may not be immediately visible, such as acquired brain
injury.
Plurality of beliefs. Far from being completely remote to each other, the cultural beliefs
shaping understanding of disability appeared to be interconnected. The preference for one
narrative was not to the exclusion of another. Rather it was common for two or more explana-
tory lines to run concurrently, and even be applied together to a given situation in the pursuit
of change for the better, if not a cure for the child’s disability:
“the child has been taken to hospitals and the child has also to the church for prayers but
the parents were told that she was attacked by demons and till now the child is just the
same.” [CHW5]
The quest for a treatment to improve the child’s condition was a clear driving force. Occa-
sionally, change for the better was attributed to one particular course of action that aligned
itself to one of the narrative genres:
“I tried everything possible. In fact he had amulets on the hand and leg. But the doctors
really helped a lot.” [WG10]
Challenges
Challenges were recognised in relation to disability, both for the person affected, and their
family, particularly the caregiver. As illustrated in Fig 2, these were organised around two orga-
nising themes: Burden of Care and Barriers to Inclusion.Caregiver stress, which included psy-
cho-social, physical and financial factors, emerged as a third theme with connections to both
the other two.
Burden of care
Associated with disability, this was related to ‘support demands’ and ‘preventing harm’. Chal-
lenges concerned personal maintenance of the individual and family in terms of clothing,
hygiene, mobility and sustenance. This extended to self-care, and caring for your children
when you have a disability yourself. Stories of ‘support demands’ told of individuals who were
unable to swallow food placed in their mouth, who would discard their clothes once dressed,
had poor motor control and problems with continence, and who were dependent on others
for bathing.
“she has to be bathed and removed from where she has been washed and she is carried by
two people and put back to the bed because she is not able to move on her own.” [WG7]
Beyond everyday care demands, management of the individual’s behaviour was a common
concern. This included behaviour that impacted on others in routine events. For example,
“grabbing of food” away from others:
“if you don’t take away the food and he comes and he sees other children eating he will just
grab the food.” [WG2]
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Alongside ‘support demands’, there was recognition of the potential for exploitation and
harm of the person who was unable to decipher dangerous situations. The need to manage the
environment and reduce the degree of risk to the child’s health and wellbeing resonated across
the discussions.
“When the parent leaves the house she has to remove everything and hide it because it is a
must for him/her to take it, for example if it is kerosene he will take it and even drink it and
do with it other messy things.” [CHW2]
Sometimes the groups spoke of actions to either conceal the presence of the person, or else
to protect them from harm. For example, one respondent told of a boy tied up to prevent him
from roaming and forcing himself on a woman.
Barriers to inclusion. Whilst the Burden of Care featured in many of the stories told by
the respondents, insights into the Barriers to Inclusion were also shared. Difficulties in ‘access-
ing opportunities’ were recognised with individual experiences, such as going to school, being
constrained. There was a sense that many children and young people with disabilities stayed
within the confines of the homestead and were not part of the surrounding community. Empa-
thy was expressed for known individuals as the challenges of accomplishing routine functions
and transactions were described. Communication difficulties were attributed to many people
familiar to the groups, which included problems with self-expression and understanding the
communications of others. The perceived problems of individuals who were deaf were talked
about particularly.
Fig 2. Thematic map summarising the perceived challenges associated with disability.
https://doi.org/10.1371/journal.pone.0182214.g002
The perception of disability in rural Kenya
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“When she is asked she cannot talk, she is pregnant and she has not finished school. . .. . .
[CHW1]
Concern was expressed about the mobility and comfort of some individuals with motor
problems, with a lack of suitable equipment, such as wheelchairs, and the physical pain
endured by some also. Even when a wheelchair was available, the challenges of navigating
unmade roads and a limited transport system were evident:
“they gave him a wheelchair but even coming to buy something from the shop was a prob-
lem because the road was terrible.” [CHW1]
Alongside ‘accessing opportunities’ there was ‘stigma’. The child was viewed as being
tainted in some way and therefore not deserving of the same recognition as a non-disabled
child. Reference was made to a child being physically rejected by the family, as in excluding
them from the home or being “thrown away” [CHW2].
“when you want to mention something about the disabled you will find that the Mother
does not want to speak of it. . .. it’s like she has already changed the topic.” [WG8]
The desire to conceal the child was expressed in two main ways. Firstly, there was denial of
disability in conversation, whereby a mother was described as having “already changed the
topic” [WG8]. Secondly, and demonstrating a more extreme response to the negative view of
disability, there was talk of children being restrained in some way with chains or ropes. Inter-
actions with the child were described as showing a lack of human warmth and regard, thereby
assigning the child to a sub-human class:
“She locks the child up in a house and when she is being given food she pushes the food to
her using a stick. The child looks as if he/she has not taken a bath for ages.” [CHW2]
The groups told of many incidents of unfair and abusive treatment of the person with a dis-
ability. Stories were told of children being chased away if they asked for food and of individuals
being “falsely judged”. When something happened that was undesirable or caused a problem,
it was often the case that the individual with a disability would be blamed and punished:
“He sleeps at home with the other children and they wet the bed but he is the only one who
will be beaten and will also wash the clothes of the other children.” [CHW5]
The stigma associated with people with disabilities extended to people trying to help. The
implication was that the person offering assistance would also . . .give birth to such a child”
[CHW7].
Stress. Stress appeared to be a bi-product of both ‘Burden of care’ and ‘Barriers to inclu-
sion’, affecting not only the caregiver, but also the individual with a disability. Unable to leave
their child for any period of time due to on-going care needs, caregivers were described as hav-
ing “trouble”. Often this depicted the tensions between making sure the child was looked after
whilst also needing to go to work in order to contribute to the household income:
“the mother is experiencing a lot of trouble because when she wants to go somewhere . . .
she cannot carry the child and cannot leave her at home also.” [CHW4]
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The “trouble” experienced by individuals with disabling conditions was also articulated,
either as a general recognition of the difficulties experienced in everyday life or more specifi-
cally in relation to parenthood and employment:
“She has problems, she has a child with no job and the times are hard. So these are things
which are sad.” [CHW1]
Discussion
Ingstad’s closely connected categories [20] of Oneself and Others reflected Giriama philosophy
in this part of the Kenyan coast, but were also resonant of narratives in other sub-Saharan
countries including Malawi [2], Namibia [22], Tanzania [23] and Zimbabwe [29]. Generally,
disability was associated with negative images, which is consistent with the representations
used by children [1719], and in the automatic responses of adults [17]. An underlying cogni-
tive process may be at work here, as suggested by Federici et al. [18], such that when open-
ended questions were posed to the groups, there was immediate resort to an early mental
representation. Attributing the child’s condition to some form of malevolent, preternatural
force, by reference to demons, evil spirits and witchcraft, contributed to the view of disability
as both undesirable and unacceptable.
Lacking exposure to alternative explanatory models, which might have supported a differ-
ent set of interpretations [17], the language used and its associated visualisations shifted the
view from what Goffman described as ‘a whole person to a tainted, discounted one’ (p.3) [47].
However, attributing disability to the flouting of moral codes, such as indulging in extra-mari-
tal relations and incest between members of the same family, at least deflected the focus from
the individual with a disability to others [20]. To the extent that answers were sought in the
immediate environment, this would seem to be reminiscent of a social model [910]. How-
ever, causal blame was still inferred, albeit attributed to immediate family members, and the
predominant view of the child was as a flawed being. Women were particularly identified as
complicit, although not exclusively so, in traditional stories of immoral behaviour, possibly
commensurate with their generally lower status in African society and their roIes as caregivers
and managers of the homestead. In this way disability was located in a social context, which is
consistent with the idea of sense-making [36]. Explanations for disability were further sup-
ported by references made to the physical world. For example, the tying of a washing line was
connected to incestuous relations in the family; curvature of spine or limbs represented the
effects of a curse; and saliva production was linked to demons and ill-gotten financial gain.
Thus the intangible, i.e. the preternatural forces, assumed a real world form in the communal
stories with references made to misplacement of household objects and physical manifesta-
tions of a child’s disability.
The data showed that religious beliefs provided a possible remedy for a major life stressor
such as disability, which is also corroborated in the literature [3334]. References to the ‘will of
God’ demonstrated cognitive appraisal of circumstances and rationalisation of responses [23,
3334]. The faith-based explanations revealed a benevolent presence, with no mention of the
punitive God reported by others [27,35]. Thus religion was seen as a coping strategy, which
entailed benign reappraisal of faith and the seeking of religious support. As Pargament sug-
gested, this appeared to be related to acceptance and adjustment [34]. This is different from
the published findings of others [22,3132] where a punitive God was also recognised.
Biological attributions of disabling conditions told of biomedical causes related to pre-,
peri- and post-natal difficulties. The participation of CHW groups, who were attached to a
The perception of disability in rural Kenya
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local health dispensary, may account for the growth in knowledge. Engaged in health matters
and interacting with trained practitioners on a voluntary basis may account for their awareness
of biomedical matters. However, the WGs also cited biological causes of disability. Some of the
women belonged to both types of community group and thus cross-fertilisation of information
was likely. It is worth noting that whilst some explanations appeared to have a scientific basis,
myths with no substantive foundation were also reported, e.g. taking birth control pills. Thus
the quality of biomedical information about the causes of disability was observed to be emerg-
ing, but inconsistencies in understanding were present. Never-the-less, it was evident that the
views expressed by the groups were, in part, attributable to a learning process [17].
In the circumstance of sparse information [1] and poor access to limited resources [23],
competing explanations appear to have developed–some based on biomedical evidence, and
some on superstitious beliefs. Thus a cultural repertoire of disability meanings and causes
existed. It is possible that pragmatism lies at the centre of these plural belief systems (Others;
Oneself; Fate,nature or the will of God; and Biological). Explanatory narratives were closely
associated with the pursuit for answers to the disability question and the quest to change the
given situation for the better [27]. For example, Biological attribution conveyed a health prob-
lem where a visit to a medical centre might follow. In contrast, Others or Oneself implied some
form of wrongdoing or the presence of an evil force might necessitate a visit to a local witch-
doctor. Failure to rectify the situation through one course of action seemed to trigger a shift
from one belief system to another, and to a different course of action. It appeared that the
major sources of explanation for disability were not mutually exclusive; rather they operated as
components of a spectrum defined by the desire to understand and improve the given
situation.
The communal narratives were set against a backdrop of perceived challenges of caring for
someone with a disability, or indeed living with a disability. The difficulties associated with
caregiving and meeting ‘support demands’ in the circumstance of limited resources were rec-
ognised factors. This is consistent with earlier research evidence, with much of the burden of
caregiving falling to the mother [2426,4951]. The respondents were not only aware of the
stresses placed on caregivers, but also recognised the difficulties experienced by some individu-
als with disabilities. The sharing of stories and the sympathy expressed regarding the chal-
lenges faced, indicated that many of the groups’ members had encountered people with
disabilities and their caregivers in their local communities, which may have tempered their
individual perspectives [1116]. Efforts made to protect the child from physical hazards in the
homestead, as well as from the aversive responses of others, formed another dimension of the
caregiver burden. The desire to ‘prevent(ing) harm’ reflected the narratives presented in the
Kenya-based CNN documentary, ‘Locked Up and Forgotten’ [56]. Of course, the very act of
keeping children with disabilities apart from the community, may contribute to the social dis-
tance between them.
Constraints on community inclusion were defined by challenges of accessing opportunities
and the existence of stigmatising attitudes. Practices that excluded the individual from the
places, activities and events shared by other members of the community were consistent with
the findings of others [4045], and undermined possibilities and opportunities for those with
disability [4], particularly in terms of education and livelihood [3445].
In a context of poverty, limited resources and psychological stresses, people with disabilities
appeared to be assigned a lower priority. Groce observed that cultural beliefs about disability
causation may have attracted prejudicial attitudes and discriminating behaviour within the
family unit, and beyond in the community [21]. However, an alternative explanation for exclu-
sionary behaviours was also evident in the desire of some caregivers to protect their child from
personal harm and to prevent anti-social behaviour. Thus, in addition to the plural belief
The perception of disability in rural Kenya
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systems used to explain disability, the practices observed in relation to people with disabilities
may also have had more than one type of rationalisation.
Limitations
Focus group discussions were conducted in formally constituted community groups. Whilst
this brought the benefits of a familiar membership in a natural setting, serving to authenticate
the popular explanations for disability, the purpose of the groups, the health focus of CHW
groups and the address of female interests in the WGs, were also potential sources of influence.
A purposive sample of members of the local community may have yielded a more representa-
tive data set. The membership of the CHW groups was mixed compared to the female mem-
bership of the WGs. In terms of discursive process, however, no gender-specific issues were
observed. High participant numbers in some of the FGDs may have constrained the flow of
discussion, although the alternative of capping the number invited into the discussion was
considered a risk to community engagement. The qualitative study focused solely on FGDs
and therefore triangulation of data was not carried out. As the first part of a two-phase study,
the focus was on reflection. Feedback to the groups was restricted to the intervention phase
(education) where disability awareness training was carried out. This is reported separately.
Conclusions
In a context of poverty, limited information, poor education and access to resources, a reper-
toire of communal narratives has emerged to support local understanding of disability. The
current study, whilst supporting the relevance of Ingstad’s categories of cultural beliefs [20] in
this part of Kenya, defined the inter-connections between the different categories. Biomedical
factors were also present within the framework of cultural understanding. Plurality of beliefs
was common, and closely linked to challenges associated with the burden of caregiving and
barriers to inclusion. In the face of such difficulties, it appeared that efforts were made to make
sense of the existing situation. It could be said that oscillation between explanatory lines dem-
onstrated instability, where the search for understanding and cure affected broader acceptance
of and adaptability to the circumstance of disability. Alternatively, a more positive interpreta-
tion asserts that the repertoire of explanatory narratives reflected a healthy pluralism, whereby
multiple and sometimes combined courses of action were part of efforts to make a difficult
and challenging situation better. Further research is needed to examine the relationship
between cultural beliefs and local responses, and the motivations underpinning particular
courses of action.
Supporting information
S1 File. Focus group discussion guide.
(DOCX)
Acknowledgments
We would like to express our gratitude to the members of the community groups for giving
generously of their time to share their experiences and perceptions with us. We would like to
thank the Director of Kenya Medical Research Institute for permission to publish the data.
The project is supported by the CP Trust. Charles Newton is Wellcome-funded. Finally, we
would like to acknowledge the support of the Kenya Medical Research Institute in funding the
open-access publication.
The perception of disability in rural Kenya
PLOS ONE | https://doi.org/10.1371/journal.pone.0182214 August 3, 2017 16 / 20
Author Contributions
Conceptualization: Karen Bunning, Joseph K. Gona, Sally Hartley.
Data curation: Karen Bunning, Joseph K. Gona.
Formal analysis: Karen Bunning, Joseph K. Gona.
Funding acquisition: Karen Bunning.
Investigation: Joseph K. Gona.
Methodology: Karen Bunning, Joseph K. Gona, Charles R. Newton, Sally Hartley.
Project administration: Karen Bunning, Joseph K. Gona.
Resources: Karen Bunning.
Supervision: Charles R. Newton, Sally Hartley.
Validation: Karen Bunning.
Visualization: Karen Bunning.
Writing original draft: Karen Bunning.
Writing review & editing: Karen Bunning, Joseph K. Gona, Charles R. Newton, Sally
Hartley.
References
1. Ensor T, Cooper S. Overcoming barriers to health service access: influencing the demand side. Health
Policy Plan. 2004; 19: 69–79. PMID: 14982885
2. Paget A, Mallewa M, Chinguo D, Mahabere-Chrambo C, Gladstone M. ‘‘It means you are grounded”–
caregivers’ perspectives on the rehabilitation of children with neurodisability in Malawi. Disabil Rehabil.
2016: 223–234. https://doi.org/10.3109/09638288.2015.1035458 PMID: 25879468
3. Bunning K, Gona JK, Odera-Mung’ala V, Newton CR, Geere J, Hong CS, et al. Survey of rehabilitation
support for children 0–15 years in a rural part of Kenya. Disabil Rehabil. 2014; 36: 1033–1041. https://
doi.org/10.3109/09638288.2013.829524 PMID: 23991677
4. Shakespeare T. Disability rights and wrongs revisited. 1
st
ed. London: Routledge; 2014.
5. Helander E. Prejudice and dignity: An introduction to community-based rehabilitation. NewYork: United
Nations Development Programme; 1993.
6. Bronfenbrenner U. Ecological systems theory 1992. In: Bronfenbrenner U, editor. Making Human
Beings human: Bioecological perspectives on human development. London: Sage Publications;
2005. pp. 106–173.
7. World Health Organization. International Classification of Functioning, Disability and Health: ICF.
Geneva, Switzerland: World Health Organization; 2001.
8. World Health Organization. International classification of Functioning, Disability and Health: Children
and Youth version: ICF-CY. Geneva, Switzerland: World Health Organization; 2008.
9. Oliver M. Understanding disability: From theory to practice. London: MacMillan Press Ltd; 1996.
10. Terzi L. The social model of disability: A philosophical critique. J Appl Philos. 2004; 21: 141–157.
11. Armstrong M, Morris C, Abraham C, Tarrant M. Interventions utilising contact with people with disabili-
ties to improve children’s attitudes towards disability: A systematic review and meta-analysis. Disabil
Health J. 2017; 10: 11–22. https://doi.org/10.1016/j.dhjo.2016.10.003 PMID: 27780687
12. Armstrong M, Morris C, Abraham C, Ukoumunne OC, Tarrant M. Children’s contactwith people with
disabilities and their attitudes towards disability: a cross-sectional study. Disabil Rehabil. 2016; 38:
879–888. https://doi.org/10.3109/09638288.2015.1074727 PMID: 26289369
13. MacMilan M, Tarrant M, Abraham C, Morris C. The association between children’s contact with people
with disabilities and their attitudes towards disability: a systematic review. Dev Med Child Neurol. 2013;
56: 529–546. https://doi.org/10.1111/dmcn.12326 PMID: 24219501
14. Schwab S. The impact of contact on students’ attitudes towards peers with disabilities. 2017; 62: 160–
165. https://doi.org/10.1016/j.ridd.2017.01.015 PMID: 28167314
The perception of disability in rural Kenya
PLOS ONE | https://doi.org/10.1371/journal.pone.0182214 August 3, 2017 17 / 20
15. Shields N, Taylor NF. Contact with young adults with disability led to a positive change in attitudes
toward disability among physiotherapy students. Physiotherap Canada. 2014; 66: 298–305.
16. Allport G. The nature of prejudice. Oxford: Addison-Wesley Publishing; 1954.
17. Meloni F, Ferici S, Dennis JL. Parents’ education shapes but does not originate, the disability represen-
tations of their children. PLoS One. 2015; 10: e0128876. https://doi.org/10.1371/journal.pone.0128876
PMID: 26053585
18. Federici S, Meloni F, Catarinella A, Mazzeschi C. Models of disability in children’s pretend play: Mea-
surement of cognitive representations and affective expression using the affect in play scale. Front Psy-
chol. 2017; 8: 794. https://doi.org/10.3389/fpsyg.2017.00794 PMID: 28572778
19. Smith LA, Williams JA. Children’s understanding of the causal origins of disability. J Cog Dev. 2004; 5:
383–397.
20. Ingstad B. The disabled person in the community: social and cultural aspects. Int J Rehabil Res. 1990;
13: 187–194. PMID: 2149366
21. Groce N. Disability in cross-cultural perspective: Rethinking disability. Lancet. 1999; 354: 756–757.
PMID: PMID: 10475203
22. Haihambo C, Lightfoot E. Cultural beliefs regarding people with disabilities in Namibia: implications for
the inclusion of people with disabilities. Int J Spec Educ. 2010; 25: 76–87.
23. Stone-MacDonald A. Cultural beliefs about disability in practice at a special school in Tanzania. Int J
Disabil, Dev Educ. 2012; 59: 293–407.
24. Gona JK, Newton CR, Hartley S, Bunning K. A home-based intervention using Augmentative and Alter-
native Communication (AAC) techniques in rural Kenya: what are the carers’ experiences? Child Care
Health Dev. 2014; 40: 29–41. https://doi.org/10.1111/cch.12031 PMID: 23452318
25. Gona JK, Mung’ala-Odera V, Newton CR, Hartley S. (2010) Caring for children with disabilities in Kilifi,
Kenya: What is the carer’s experience? Child Care Health Dev. 2010; 37: 175–183.
26. Gona JK, Newton CR, Rimba K, Mapenzi R, Kihara M, Van de Vijver FJR, et al. Parents’ and profes-
sionals’ perceptions on causes and treatment options for autism spectrum disorders (ASD) in a multicul-
tural context on the Kenyan coast. PLoS One. 2015; 10: e0132729. https://doi.org/10.1371/journal.
pone.0132729 PMID: 26267668
27. Shumba A, Abosi OC. (2011) The nature, extent and causes of abuse of children with disabilities in
schools in Botswana. Int J Disabil Dev Educ. 2011; 58: 373–388.
28. Anthony J. Conceptualising disability in Ghana: implications for EFA and inclusive education. Int J Incl
Educ. 2011; 15: 1073–1086.
29. Choruma T. The forgotten tribe: People with disabilities in Zimbabwe. 1
st
ed. London: Progressio;
2006.
30. Mckenzie JA, McConkey R, Adnams C. Intellectual disability in Africa: implications for research and ser-
vice development. Disabil Rehabil. 2013; 35: 1750–1755. https://doi.org/10.3109/09638288.2012.
751461 PMID: 23350758
31. Hamzat TK, Mordi EL. Impact of caring for children with cerebral palsy on the general health of their
caregivers in the African community. Int J Rehabil Res. 2007; 30: 191–194. https://doi.org/10.1097/
MRR.0b013e3281e5af46 PMID: 17762763
32. Otte WM, Nahaga AA, Tchuda DL, Abna B, der Maas F. Cultural beliefs among people with epilepsy or
physical impairment in Guinea-Bissau: Differences and similarities. Epilepsy Behav. 2013; 29: 504–
507. https://doi.org/10.1016/j.yebeh.2013.09.001 PMID: 24094843
33. Souza Tedrus GMA, Fonseca LC, De Pietro Magri F, Magalhaes Mendes PH. Spiritual/religious coping
in patients with epilepsy: Relationship with sociodemographic and clinical aspects and quality of life.
Epilepsy Behav. 2013; 28: 386–390. https://doi.org/10.1016/j.yebeh.2013.05.011 PMID: 23860472
34. Pargament KI, Koenig HG, Perez LM. The many methods of religious coping: development and initial
validation of the RCOPE. J Clin Psychol. 2000; 56: 519–543. PMID: 10775045
35. Whyte SR, Ingstad B. Help for people with disabilities: do cultural differences matter? World Health
Forum. 1998; 19: 42–46. PMID: 9610240
36. Stone-MacDonald A, Butera G. Cultural beliefs and attitudes about disability in sub-Saharan Africa. Rev
Disabil Stud. 2012; 8: 62–77.
37. Kuper H., Nyapera V., Evans J., Munyendo D., Zurmond M., Frison S, et al. Malnutrition and childhood
disability in Turkana, Kenya: Results for a case control study. PLoS One. 2015; 10: e0144926. https://
doi.org/10.1371/journal.pone.0144926 PMID: 26689213
38. Morgan F, Tan. Parental views from rural Cambodia on disability causation and change. Disabil Reha-
bil. 2011; 33: 2114–2120. https://doi.org/10.3109/09638288.2011.560334 PMID: 21401333
The perception of disability in rural Kenya
PLOS ONE | https://doi.org/10.1371/journal.pone.0182214 August 3, 2017 18 / 20
39. Ingstad B, Whyte SR. Disability connections. In: Ingstad B, Whyte SR, editors. Disability in local and
global world. Berkley: University of California Press; 2007. pp. 1–29
40. Mitra S, Posarac A, Vick B. Disability and poverty in developing countries: A snapshot from the World
Health Survey; 2011. SP Discussion Paper no. 1109. Washington: The World Bank. Available from:
http://documents.worldbank.org/curated/en/501871468326189306/pdf/
625640NWP0110900PUBLIC00BOX361487B.pdf. Cited 7 March 2017.
41. Peters DH, Garg A, Bloom G, Walker G, Brieger WR, Rahman MH. Poverty and access to health care
in developing countries. Ann N Y Acad Sci. 2008; 1136: 161–171. https://doi.org/10.1196/annals.1425.
011 PMID: 17954679
42. UNESCO Strong Foundations: Early Childhood Care and Education. EFA Global Monitoring Report
2007. Paris: UNESCO; 2006. Available from: http://unesdoc.unesco.org/images/0014/001477/
147794e.pdf. Cited 7 March 2017.
43. Kuper H, Monteath-van Dok A, Wing K, Danquah L, Evans J, et al. The impact of disability on the lives
of children; Cross-sectional data including 8,900 children with disabilities and 898,834 children without
disabilities across 30 countries. PLoS One. 2014; 9: e107300. https://doi.org/10.1371/journal.pone.
0107300 PMID: 25202999
44. Mizunoya S, Mitra S. Is there a disability gap in employment rates in developing countries? Cornell Uni-
versity; 2012. Available from: http://digitalcommons.ilr.cornell.edu/gladnetcollect/562. Cited 7 March
2017.
45. Bines H, Lei P. Education’s missing millions: including disabled children in education through EFA FTI
processes and national sector plans. World Vision; 2007. Available from: http://cdn.worldvision.org.uk/
files/4613/8029/8799/Educations-Missing-Millions-Main-Report.pdf. Cited 7 March 2017.
46. Eide AH, Ingstad B. Disability and poverty–Reflections on research experiences in Africa and beyond.
African J Disabil. 2013; 2: Art. #31, 7 pages. http://dx.doi.org/10.4102/ajod.v2i1.31
47. Goffman E. Stigma: Notes on the management of the spoiled identity. Harmondsworth: Penguin Pub-
lishers; 1963.
48. Mak WWS, Cheung RYM. Affiliate stigma among caregivers of people with intellectual disability or men-
tal illness. J Appl Res Intellect Disabil. 2008; 21: 532–545.
49. Thrush A, Hyder A. The neglected burden of caregiving in low- and middle-income countries. Disabil
Health J. 2014; 7: 262–272. https://doi.org/10.1016/j.dhjo.2014.01.003 PMID: 24947567
50. Murphy NA, Christian B, Caplin DA, Young PC. The health of caregivers for children with disabilities:
caregiver perspective. Child Care Health Dev. 2006; 33: 180–7.
51. Ambikile JS, Outwater A. Challenges of caring for children with mental disorders: Experiences and
views of caregivers attending the outpatient clinic at Muhimbili National Hospital, Dar es Salam, Tanza-
nia. Child Adolesc Psychiatry Ment Health. 2012; 6: 6.
52. Groce N, Trasi R. Rape of individuals with disability: AIDS and the folk belief of ‘virgin cleansing’. The
Lancet. 2004; 363: 1663–1664. https://doi.org/10.1016/S0140-6736(04)16288-0
53. Sullivan PM, Brookhouse PE, Scanlan JM, Knutson JF, Schultes LE. Patterns of physical and sexual
abuse of communicatively handicapped children. Ann Otol Rhinol Laryngol. 1991; 100: 188–194.
https://doi.org/10.1177/000348949110000304 PMID: 2006816
54. Hibbard R, Desch LW. Maltreatment of children with disabilities. Pediatr. 2007; 119: 1018–1025.
55. Kvam MH, Braathen SH. “I thought. . . maybe this is my chance” Sexual abuse against girls and women
with disabilities in Malawi. Sex Abuse. 2008; 20: 5–24. https://doi.org/10.1177/1079063208314817
PMID: 18420554
56. Mckenzie D, director. Locked Up and Forgotten [Film]; 2011. Atlanta, GA: Turner Broadcasting Sys-
tems. Available at: https://www.youtube.com/watch?v=gM4meNCLYAA. Cited 7 March 2017.
57. Creswell JW, Hanson WE, Plano Clark VL, Morales A. Qualitative research designs: Selection and
Implementation. Couns Psychol. 2007; 35: 236–264.
58. Kenya National Bureau for Statistics (KNBS). Kenya Integrated Household Budget Survey (KIHBS)
2005 and 2006. Available from: http://www.knbs.or.ke/pdf/Basic%20Report%20(Revised%20Edition).
pdf Cited 7 March 2017.
59. World Health Organisation. Disability–a global picture. In: World report on disability. Geneva: WHO &
World Bank; 2011. pp19-53.
60. Oliver M, Geniets A, Winters N, Rega I, Mbae SM. What do community health workers have to say
about their work, and how can this inform improved programme design? A case study with CHWs within
Kenya. Global Health Action. 2015; 8. Available from: http://dx.doi.org/10.3402/gha.v8.27168. Cited 7
March 2017.
The perception of disability in rural Kenya
PLOS ONE | https://doi.org/10.1371/journal.pone.0182214 August 3, 2017 19 / 20
61. Women groups in Kenya. SoftKenya: All about Kenya. Available from: www.softkenya.com. Cited 7
March 2017.
62. Braun V, Clarke V. Successful qualitative research: A practical guide for beginners. London: Sage;
2013.
The perception of disability in rural Kenya
PLOS ONE | https://doi.org/10.1371/journal.pone.0182214 August 3, 2017 20 / 20

Supplementary resource (1)

... A respondent stated that 'many disabled people in rural areas face even greater discrimination due to lower levels of education and to the influence of local culture' (R8). In the same way, some authors (see Bunning et al., 2017;Stone-MacDonald et al., 2014) assert that the local culture in rural areas often views disability as a curse or a punishment, resulting in stigma and prejudice against PWDs. ...
... Interviews mirror international research emphasising the psychological toll of social exclusion on PWDs (Stone-MacDonald et al., 2014;Dauti, 2015;Boardman et al., 2022). Testimonies also corroborate trends of employment discrimination due to lack of reasonable accommodation and accessible training opportunities, as found generally in developing countries amid crisis (Bunning et al., 2017;Blanck, 2020;Ochrach et al., 2022;Lindsay et al., 2023). ...
... Rural areas exhibit heightened discrimination rooted in traditional beliefs. Rural contexts present unique barriers through inaccessibility, poverty and traditional beliefs (Bunning et al., 2017). Targeted local interventions and advocacy are required to reach dispersed communities. ...
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This article highlights the challenges faced by people with disabilities (PWDs) in northwest Syria (NWS), a region that has been severely affected by the ongoing conflict. The study draws attention to the increasing number of disabilities resulting from the war and the lack of support and infrastructure for persons with disabilities (PWDs). It examines the barriers that PWDs face in their communities, education, health services, and the labour market. The research identifies three pivotal domains of challenges: Identity and Community Participation; Learning and Work; and Protection and Wellbeing. The article argues that these challenges are rooted in a lack of disability-inclusive policies and infrastructure, as well as negative societal attitudes. The findings underscore the need for concrete steps to dismantle barriers, promote inclusion, and uphold the fundamental rights of PWDs. This includes addressing gender disparities, providing accessible education and employment opportunities, and ensuring legal protections and healthcare access. Drawing on the social model of disability and human rights perspectives, the article argues for the need to adopt inclusive policies, and awareness campaigns to create a more equitable society.
... Care should therefore be taken to provide the right and relevant information to communities and relevant stakeholders on the causes, prevention and management of HL. This has equally been employed and recommended in settings with similar findings to ours (Barnett, 2002;Bunning et al., 2017;Davids et al., 2021;Govender & Khan, 2017;Hallam et al., 2008;Shaw et al., 2013). The fact that several respondents believed that PWHL could not lead lives comparable in achievement to their hearing counterparts suggested community stigma, poor acceptance of PWHL and threatened the quality of life of PWHL. ...
... Challenges experienced by PWHL are generally more compared to their normal hearing peers and range from individual to systemic with potential spillover to involve family and friends (Bunning et al., 2017;Davids et al., 2021;Hallam et al., 2008). One of the systemic challenges reported is workplace discrimination and in-service delivery, fuelled by social stigma and the absence of accommodative infrastructures for PWHL. ...
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The World Health Organization (WHO) advocates for community accessibility of ear and hearing health services. The success of such services is influenced by a community’s under-standing of hearing loss causes and attitudes towards persons with hearing loss (PWHL). A cross-sectional mixed methods study was conducted in a local community in southwestern Uganda aimed at assessing knowledge on causes of hearing loss (HL) and attitudes towards PWHL using questionnaires and Focus group discussions (FGDs). Quantitative data was ana-lyzed using STATA and reported as frequencies while qualitative data was recorded, tran-scribed and relevant themes reported. A total of 370 participants between 18-35 years were recruited for the study. Community knowledge level on HL was high for congenital anoma-lies (77.3%), drugs (77%), infections like measles (84.3%) and excessive phone use (92.7%). A few participants attributed HL to cultural factors like witchcraft (45.1%). The majority of participants had favourable attitudes towards PWHL agreeing that PWHL should seek medi-cal care (95.1%), shouldn’t be isolated (95.1%) and also face unique social problems. Unfa-vourable attitudes included the belief that PWHL cannot perform as well as their hearing peers and that they are emotionally disturbed. The study revealed a community knowledgea-ble on HL causes but with limited appreciation of the capabilities and unique challenges of PWHL which negatively influences the community attitude towards PWHL
... Thus, these socio-cultural discourses can create the idea that individuals with disabilities are undesirable [13]. In addition to wider culture and media sources, perceptions about disability can also stem from a lack of knowledge (i.e., not having taken a course about disability [10,[17][18][19] and personal relationships (i.e., having a family member or a close friend with a disability [12]. ...
... In addition, frequent and quality contact with persons with disabilities increases positive perceptions of disability, given contact between social groups may decrease prejudice [46]. Consistent with previous literature about the lack of knowledge of disability due to inexperience with persons with disabilities [10,[17][18][19], most stories that mentioned Alex, a person without a disability, had a lack of knowledge of disability due to inexperience with disability, often leading to Alex's discomfort around Taylor. However, after interacting with and fostering a social connection with Taylor, Alex's initial negative perceptions changed. ...
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This study explored conceptualizations of disability pertaining to peer relationships versus romantic relationships, as well as type of physical disability, using story-completion methods. Seventy-four graduate and undergraduate students from a Canadian university completed one of two versions of a story stem featuring an individual with a physical disability who was either a classmate or a potential romantic partner. Through the process of thematic analysis, three themes were generated as patterns across stories: (1) assumptions about disability present from first glance; (2) uncertainty in navigating negative assumptions of disability; and (3) from discomfort to acceptance of disability through social connection. Storylines differed depending on the type of relationship (i.e., peer or romantic) in both story length and outcome of the relationship. Findings suggest the usefulness of the relatively infrequently used method of story completion for assessing students’ narratives and discussion of meanings surrounding differing relationships with persons with a disability. This study further develops our understanding of cultural norms of disability, as well as highlights the importance of disability knowledge and interaction between persons with and without a disability, to foster positive change in representations and perceptions of disability.
... Communication disability is often poorly understood and mistakenly attributed, for example, to inability to speak a particular language, alcoholic intoxication, psychosis, a curse or supernatural forces. 13 Communication disability can be associated with a wide range of adverse outcomes. These include the following: a. Poorer educational achievements including challenges in achievement in both literacy and mathematics. ...
... Many communication rehabilitation resources are language-specific and contextspecific, originating from HICs. Cultural interpretations of communication disability vary 13 and interventions for PWCD should draw on local knowledges of speech and language development, explanatory models of language, language socialisation, child-rearing and health beliefs. 19 SUMMARY Communication disability is often invisible and has longlasting and wide-ranging impacts. ...
... Cultural factors influence the perception and acceptance of peer support. In African cultures, the extended family and community play significant roles in supporting individuals with health challenges (Bunning, Gona & Hartley 2017;Jazieh, Volker & Taher 2018). Some communities rely on traditional healing practices and religious beliefs alongside conventional medicine (Asuzu et al. 2019). ...
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Background and Objectives: Many children with (CP) and their families in Saudi Arabia struggle emotionally. Unfortunately, there have not been many studies conducted on how to help them with these challenges. This research aims to bring attention to this gap and to explore how a lack of proper mental health care might affect these children’s ability to participate in everyday activities. Materials and Methods: In this cross-sectional descriptive study, a survey was conducted between August and October 2023. A total of 300 parents of CP children from Saudi Arabia participated in the study. The impact of psychological care negligence on the occupational engagement of CP children and their families was assessed by designing a valid questionnaire. Results: A total of 300 parents of children with CP participated in this study. The majority of the sample, 71% of parents, said that their children did not receive any psychological care, and 59.7% of the participants said that their children did not even receive a referral to a psychologist. However, 60.3% of parents of children noticed a significant decline in the occupational performance of their children, and 65.7% predicted an improvement in their children’s performance with future psychological care. Conclusions: It is clear that there is a lack of awareness about the importance of mental health care for children with CP in Saudi Arabia. This lack of care hinders these children and their families’ occupational engagement and social participation.
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Play is a natural mode of children’s expression and constitutes a fundamental aspect of their life. Cognitive, affective, and social aspects can be assessed through play, considered as a “window” to observe a child’s functioning. According to Russ’s model, cognitive and affective components and their reciprocal connections can be assessed through the Affect in Play Scale (APS). The aim of the present study was to investigate children’s representations of the three main models of disability (medical, social, and biopsychosocial) and how these models affected cognitive and affective components of children’s play. Sixty-three children, aged 6–10 years, were assessed by means of the APS. Participants were randomly assigned to one of two APS task orders: the standard APS task followed by the modified APS task (including a wheelchair toy), or vice versa. The standard and modified APS sessions were coded according to the APS system. The modified APS sessions were also coded for the model of disability expressed by children. A one-way ANOVA conducted on the APS affective and cognitive indexes revealed an effect of condition on the affective components of play and no effect on cognitive components and variety of affect as assessed by the APS. In addition, when children are involved in pretend play from which concepts of disability emerge, these concepts are almost exclusively related to the medical model of disability. Results suggested implications for intervention with children in educational contexts that aim to teach children about disability.
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The present research tested whether children's disability representations are influenced by cultural variables (e.g., social activities, parent education, custom complex variables) or by cognitive constraints. Four questionnaires were administered to a sample of 76 primary school aged children and one of their parents (n = 152). Questionnaires included both open-ended and closed-ended questions. The open-ended questions were created to collect uncensored personal explanations of disability, whereas the closed-ended questions were designed to elicit a response of agreement for statements built on the basis of the three most widespread disability models: individual, social, and biopsychosocial. For youngest children (6-8 years old), people with disabilities are thought of as being sick. This early disability representation of children is consistent with the individual model of disability and independent from parents' disability explanations and representations. As children grow older (9-11 years old), knowledge regarding disability increases and stereotypical beliefs about disability decrease, by tending to espouse their parents representations. The individual model remains in the background for the adults too, emerging when the respondents rely on their most immediately available mental representation of disability such as when they respond to an open-ended question. These findings support that the youngest children are not completely permeable to social representations of disability likely due to cognitive constraints. Nevertheless, as the age grows, children appear educable on perspectives of disability adhering to a model of disability representation integral with social context and parent perspective.
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This study aimed to understand the relationship between contact with peers with Special Educational Needs (SEN) and students'’ attitudes towards their peers with SEN, by examining the inter-group contact theory in regular and inclusive classes. A total of 463 students in 8th grade, with a mean age of 14.42 years, from 25 secondary school classes in Styria (Austria) completed a self-report questionnaire regarding their contact with peers with SEN and their attitudes towards peers with disabilities. Contact was indicated by nominations for joint activities and examined in inclusive and regular classes. The German short version of the Chedoke-McMaster Attitudes towards Children with Handicaps scale (CATCH; Schwab, 2015b; Rosenbaum et al., 1986) was used to measure students’ attitudes towards peers with learning disabilities and emotional disorders. Students with SEN are less frequently nominated by their peers for joint activities, such as working together on a school project. Students from inclusive and regular classes did not differ in their attitudes towards peers with SEN. However, those students who nominated at least one peer with SEN for a joint activity had more positive attitudes towards peers with disabilities. Freely choosing contact with a peer with SEN was associated with more positive attitudes towards disability while simply attending the same class may have no effect or even a negative impact on students’ attitudes.
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Background: Children with disabilities are often the target of prejudice from their peers. The effects of prejudice include harmful health consequences. The Contact Hypothesis has previously shown to promote positive attitudes towards a range of social groups. Objective: To conduct a systematic review and meta-analysis on the effectiveness of school-based interventions for improving children's attitudes towards disability through contact with people with disabilities. Methods: A comprehensive search was conducted across multiple databases. Studies were included if it evaluated an intervention that aimed to improve children's attitudes towards disability and involved either direct (in-person) or indirect (e.g., extended) contact with people with disabilities. Data were synthesised in a meta-analysis. Results: Twelve studies met the inclusion criteria. Of these, 11 found significant effects: six used direct contact, two used extended contact, two used parasocial (media-based) contact and one used guided imagined contact. One parasocial contact intervention found no significant effects. Three meta-analyses showed direct contact (d = 0.55, 95% CI 0.20 to 0.90) and extended contact (d = 0.61, 95% CI 0.15 to 1.07) improved children's attitudes; there was no evidence for parasocial contact (d = 0.20, 95% CI -0.01 to 1.40). Conclusions: Direct, extended, and guided imagined contact interventions are effective in improving children's attitudes towards disability; there was no evidence for parasocial contact.
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Over the last thirty years, the field of disability studies has emerged from the political activism of disabled people. In this challenging review of the field, leading disability academic and activist Tom Shakespeare argues that the social model theory has reached a dead end. Drawing on a critical realist perspective, Shakespeare promotes a pluralist, engaged and nuanced approach to disability. Key topics discussed include: dichotomies - the dangerous polarizations of medical model versus social model, impairment versus disability and disabled people versus non-disabled people, identity - the drawbacks of the disability movement's emphasis on identity politics, bioethics in disability - choices at the beginning and end of life and in the field of genetic and stem cell therapies, care and social relationships - questions of intimacy and friendship. This stimulating and accessible book challenges orthodoxies in British disability studies, promoting a new conceptualization of disability and fresh research agenda. It is an invaluable resource for researchers and students in disability studies and sociology, as well as professionals, policy makers and activists.
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Namibia is a southern African country with national level policies promoting community inclusion and inclusive education. Despite these policies, people with disabilities are often excluded from schools and community life. This study explores the nuanced cultural beliefs about the causes of disability in Namibia, and the impacts of such beliefs on the implementation of disability policy. Eight themes emerged from this study regarding specific myths about the causes of disability and appropriate community responses to people with disabilities. This study finds that many Namibians believe in supernatural causes of disability, such as witchcraft, and/or in the role of improper relationships of family members as causes of disability; and that community responses to Namibians with disabilities are often negative. However, many people, particularly parents with disabilities, often have strong positive views of disability as well, reflecting the complex and changing nature of cultural beliefs. This study suggests that the implementation of disability inclusion policies is more likely to be successful if it builds upon positive aspects of cultural beliefs about disability.