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Understanding the experiences
and needs of South Asian families
caring for a child with learning
disabilities in the United Kingdom: an
experiential–contextual framework
Kuljit Heer , John Rose a & Michael Larkin
a School of Psychology, University of Birmingham, Edgbaston,
Birmingham, UK
Version of record first published: 19 Jul 2012.
To cite this article: Kuljit Heer , John Rose & Michael Larkin (2012): Understanding the experiences
and needs of South Asian families caring for a child with learning disabilities in the United Kingdom:
an experiential–contextual framework, Disability & Society, 27:7, 949-963
To link to this article: http://dx.doi.org/10.1080/09687599.2012.699276
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Understanding the experiences and needs of South Asian families
caring for a child with learning disabilities in the United
Kingdom: an experiential–contextual framework
Kuljit Heer, John Rose* and Michael Larkin
School of Psychology, University of Birmingham, Edgbaston, Birmingham, UK
(Received 22 February 2011; final version received 1 March 2012)
The prevalence of learning disabilities amongst South Asian communities in the
United Kingdom is thought to be almost three times higher than in any other
community. Despite this, service utilisation amongst this group remains low and
working cross-culturally can pose unique challenges for service providers. The
experiences of South Asian families caring for a child with learning disabilities
within the United Kingdom are multifaceted. This article proposes an experien-
tial–contextual framework for exploring these experiences. The framework
incorporates minority experiences as well as medical and social models of dis-
ability. The experiential–contextual framework has been applied to understand-
ing important aspects of South Asians experiences, including: the interpretations
and understanding of learning disabilities; interactions with healthcare systems;
minority group pressures; and the influence of acculturation and diversity within
ethnic groups.
Keywords: learning disabilities; ethnicity; models of disability; South Asian;
culture
Points of interest
•The prevalence of learning disabilities is thought to be almost three times
higher amongst the South Asian community than any other community in the
United Kingdom.
•Despite this higher prevalence, service uptake and utilisation amongst the
South Asian community in the United Kingdom remains low and may be
linked to differences in the understanding and interpretations of learning dis-
ability amongst South Asian communities.
•When making sense of their child’s disability South Asian families may draw
on their cultural resources, such as beliefs, values and norms.
•This article proposes an experiential–contextual framework for exploring the
experiences of South Asian families, which encompasses minority experience,
the medical model of disability and the social model of disability.
•The framework highlights the need for services to consider the role of culture
in shaping the experiences of minority communities in the United Kingdom.
*Corresponding author. Email: j.l.rose@bham.ac.uk
Disability & Society
Vol. 27, No. 7, December 2012, 949–963
ISSN 0968-7599 print/ISSN 1360-0508 online
Ó2012 Taylor & Francis
http://dx.doi.org/10.1080/09687599.2012.699276
http://www.tandfonline.com
Downloaded by [King's College London] at 03:13 02 January 2013
Introduction
In the United Kingdom the term South Asian usually refers to people who originate
from the Asian sub-continent –namely India, Pakistan, Bangladesh and Kashmir
(British Sociological Association 2005). Azmi et al. (1996) found the prevalence of
learning disabilities in South Asians aged between five and 32 to be three times
higher than in any other communities in the United Kingdom, and of those families
19% had more than one family member with a learning disability –findings that
have been reinforced by the work of Emerson et al. (1997). This higher prevalence
may be linked to a poor uptake of maternity services, higher genetic risk factors as
well as pervasive social and material disadvantage amongst South Asian communi-
ties in the United Kingdom (Emerson and Hatton 2004). However, estimates of the
prevalence of learning disabilities vary substantially depending on the source of the
data and how the learning disability is defined.
While we recognise that labelling children can be inaccurate and stigmatising,
in order to provide a comparison we will use the term ‘children with learning
disabilities’to be consistent with other research (Hatton et al. 2002, 2010) and
provide the reader with a frame of reference. The experiences of South Asian
families caring for a child with learning disability in the United Kingdom can
be very distinct from those of White families. This has been referred to as the
‘minority experience’and can be influenced by a number of factors such as con-
flicting values and beliefs, acculturation, the nature of the migration, language
and social status (Sue and Sue 1999). ‘Minority experience’can have a signifi-
cant impact on the way in which South Asian families experience and perceive
disability. For example, it can influence the way in which disability is labelled,
understood and experienced within a family, which in return can influence ser-
vice uptake, diagnosis and interventions accessed (Skinner and Weisner 2007).
Given the high prevalence of learning disabilities amongst South Asian commu-
nities in the United Kingdom, and the complexity of the minority experience,
this paper proposes an experiential–contextual framework for understanding the
experiences of South Asian families caring for a child with learning disabilities.
The paper explores the interplay between minority experience and two western
models of disability: the medical and social models.
An experiential–contextual framework of disability
This framework (see Figure 1) is applicable as it examines how context (contextual)
can relate to people’s experiences (experiential) of care-giving to children with dis-
abilities. The framework integrates three models of disability (minority, medical and
social) and examines the role they play in creating a context for shaping the experi-
ences of South Asian families caring for children with disabilities in the United
Kingdom. In so doing it provides a more holistic view of understanding the com-
plexity of experiencing disability in multicultural societies. South Asian families
will ultimately be influenced by their minority community contexts and the way in
which their own community recognises and responds to learning disabilities (Skin-
ner and Weisner 2007). This is encompassed as the ‘minority experience’. They will
also be influenced by social factors such as poverty, class and discrimination, which
are covered in the social model. Finally, the families will also be influenced by their
interactions with healthcare systems, which predominantly operate under a medical
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model. The three components of the newly proposed experiential–contextual frame-
work will now be described briefly.
‘Minority experience’
Definitions and labels of disability and family responses to disability may influence
families’experiences of caring for a child with learning disabilities (Skinner and
Weisner 2007). Families often create their own personal meanings and understand-
ings of disability, which are influenced by a number of factors such as cultural
beliefs and values, religious beliefs, friends and family. Cultures and societies gen-
erate shared sets of assumptions and beliefs about particular issues. Such resources
enable people to make sense of and interpret their experiences. South Asians who
have a strong sense of cultural and ethnic identity may tend to adopt assumptions
and beliefs from within their own communities. This means that in the United
Kingdom their understandings and perceptions about learning disabilities will be
influenced by people, practices and institutions from within their own minority
communities. The plurality of such resources is important, given the heterogeneity
of origins, languages and cultures falling under the term ‘South Asian’.
Medical model
The medical model relies on ‘understanding a person’s problems behaviour or con-
dition in terms of illness diagnosis and treatment’. In the England, the introduction
SOCIAL MODEL
•Alternative treatments
•Care provided within family unit
•Non -English -speaking
•Religious practices
•Cultural traditions
•Stigma
•Minority group expectations &
norms
•Illness caused by
biological factors
•Management of disability
•Specialist services, speech
therapists, psychologists
•Based on western and
medical views of disability
•Negative societal attitudes
•Inaccessible information
•Physical barriers
(buildings, etc.)
•Person-centred planning
MINORITY EXPERIENCE
MEDICAL MODEL
•Institutional racism
•Language barriers
•‘Double Discrimination’
(related to disability &
ethnic identity)
•Material disadvantage
•Stigma within ethnic
community
•Culturally
inappropriate
services
•Stereotypes/
judgemental
attitudes
•Western values
EXPERIENTIAL-
CONTEXTUAL
FRAMEWORK
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Figure 1. An experiential–contextual framework of disability.
Note: The degree to which each component will be influential in British South Asians’
experiences of learning disabilities will be affected by acculturation.
Disability & Society 951
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of the National Health Service during the 1940s led to people with learning disabili-
ties being seen in a largely medical framework, viewing disability as a health prob-
lem requiring treatment. During the 1950s and 1960s the publication of the Mental
Health Act (1959), which highlighted the distinction between mental illness and
learning disabilities, and reports of abuse and mistreatment of patients staying in
long-stay hospitals (Ely Hospital 1976 and Farleigh Hospital 1967) led to changes
in the way that individuals with learning disabilities were treated and viewed. Con-
sequently, the Government released a White Paper entitled ‘Better Services for the
Mentally Handicapped’(Department of Health and Social Security 1971) and
focused on developing services encompassing a social model framework.
Additionally, the government recognised the need to develop culturally sensitive
support services for ethnic minority groups. Documents such as the National Carers
Strategy (Department of Health 1999), Learning Difficulties and Ethnicity: A
Framework for Action (Department of Health 2004) and Valuing People Now
(Department of Health 2009) make recommendations for improving services for
South Asian families. Despite these changes, mainstream services tend to be ill-
equipped to provide appropriate services to ethnic families who define and address
disability differently from the majority population. For example, the second national
survey of learning disability partnership board’s (Hatton 2007) revealed that ser-
vices still fail to consider black and ethnic minority communities when planning
and implementing disability services.
Social model
The social model was initiated by disabled individuals advocating against the social
exclusion and oppression of people with disabilities during the 1970s (Oliver 1996;
Campbell & Oliver 1996). This led to new ways of thinking about disability in
terms of a ‘social model’, which was first described in the paper Fundamental Prin-
ciples of Disability written by the Union of the Physically Impaired Against Segre-
gation (1976). The model provides an alternative view of disability that contrasts
with the medical model, where the source of the disability is seen as external to the
individual such as societal barriers (Oliver 1996). These barriers may include nega-
tive attitudes (from society and services), inaccessible information and physical
obstructions. As a consequence, the source of the impairment is seen to be external
to the individual. This shift from medical definitions of disability to more social
constructions in the United Kingdom has led to the government creating policies
and practices that advocate the inclusion of people with disabilities in society; for
example, the Disability Discrimination Act 2005 (Parliament of the United King-
dom 2005), recently revised as the Equality Act 2010 (Government Equalities
Office 2010); and more direct payments and personal budgets as outlined in the
white paper Valuing People Now (Department of Health 2009).
Until recently, research applying the social model to understanding learning dis-
abilities was limited, with much of it being conducted in the United States (Bogdan
and Taylor 1982; Ferguson, Ferguson, and Taylor 1992). This may be linked to per-
ceived difficulties in such individuals articulating their experiences and thoughts
first hand.
Research applying the social model to ethnic communities is similarly limited.
However, it appears that South Asians will face a multitude of barriers that will be
exasperated by language barriers and differences in cultural understandings of
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disability. South Asian families tend to experience socially created barriers and neg-
ative attitudes in caring for their child with learning disabilities, which include dis-
crimination, inequalities in service uptake, isolation, material disadvantage and
racial abuse (Chakrobaty and McKenzie 2002; Nadirshaw 1997).
Applying the experiential–contextual framework to the experiences of South
Asian families caring for a child with learning disabilities in the United
Kingdom
The first half of this article provided a brief introduction to the experiential–contex-
tual framework of disability and its three components. The remainder will explore
how the experiences of South Asians caring for a child with learning disabilities
can be viewed of in terms of the newly proposed experiential–contextual framework
of disability. This will be done by addressing four broad areas, which are:
•Interpretations and understanding of learning disabilities.
•Interactions with healthcare systems.
•Minority group pressures.
•The influence of acculturation and diversity within ethnic groups.
Interpretations and understanding of learning disabilities
The minority experience can be very influential in the initial recognition of learning
disabilities. Every society has its own models of child-rearing and development that
can influence how quickly the delays are recognised. For example, Indian parents
have been shown to perceive symptoms of disability, such as speech delays, as
being part of normal development (Daley 2004). In contrast, western societies dom-
inated by medical models tend to regard early verbal skills a part of normal devel-
opment. This can be problematic during the diagnosis phase, during which South
Asian perceptions of normal development may conflict with western perceptions
and assessments and can lead to later diagnosis (Hatton et al. 2003).
The medical model concentrates on the biological and physiological causes of
disability, whereas a person who has a strong South Asian identity may understand
learning disabilities in a different way, which can conflict with the medical views of
services and health professionals, and may be related to poor service uptake (Sum-
mers and Jones 2004). When making sense of disability, South Asian families have
been shown to locate the cause of disability in traditional explanations, such as a
belief in Karma (the notion of rebirth, whereby a person’s actions in their previous
lives determines the life they will lead once reborn), God’s will, possession by spir-
its or consequences of an evil eye (Katbamn et al. 2001). South Asian communities
may also focus on finding a cure, through prayers or marriage (Katbamna et al.
2002).
When making sense of disability, families tend not to reject one model of dis-
ability in favour of the other, but instead tend to navigate between models of dis-
ability (Skinner and Weisner 2007). Bywaters et al. (2003) conducted semi-
structured interviews with 19 Pakistani and Bangladeshi families caring for a child
with a disability and found that they adopted religious and theological explana-
tions in the absence of medical explanations. This situates the problem with ser-
Disability & Society 953
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vices that fail to provide ethnic groups with appropriate explanations and accessi-
ble information regarding their child’s disability. Further evidence comes from
Croot et al. (2008), who interviewed 16 Pakistani carers of a child with disability.
They found that the majority of the carers held multiple beliefs about the disabil-
ity, which focused primarily on theological explanations, but also included bio-
medical explanations alongside these. They suggest that while parents may
initially adopt theological explanations, they may also adopt biomedical explana-
tions when faced with negative ideas from other people within their ethnic com-
munities.
Adopting alternative explanations for disability does not remove the challenges
of caring for a child with learning disabilities, and families still report concerns
around the future care of their child, inappropriate services, and lack of support
(Skinner and Weisner 2007). From an experiential–contextual perspective it appears
that in terms of understanding their child’s disability there is a large interplay
between the minority experience and the medical model. For example, South
Asian’s beliefs surrounding the aetiology of learning disabilities greatly influence
whether they choose to engage with treatment and interventions (O’Hara and Martin
2003). Families adopting non-medical explanations for learning disabilities are less
likely to engage with medical services, instead preferring treatment options that are
in keeping with their own cultural beliefs. This highlights the need for services to
consider the cultural orientation of ethnic communities in order to implement and
deliver culturally appropriate interventions.
Services could utilise an experiential–contextual framework in service delivery
by incorporating a multi-dimensional approach encompassing both the medical
model and minority experiences. In doing so, service providers would need to adopt
flexible approaches that encourage the exploration and sharing of cultural views of
learning disabilities in a non-judgemental manner, so that families feel understood
by services. Services could draw on the therapeutic qualities of religious explana-
tions in allowing parents to better cope and deal with the challenges of care-giving.
Doing this could promote more collaborative relationships between service provid-
ers and users, and ultimately lead to better engagement. Clearly, such an approach
would require training to provide professionals with the cultural competencies to
make them confident in exploring these alterative views in a sensitive manner. An
obvious method would be through formal teaching and training. However, alterna-
tive techniques such as reflective practice may be more appropriate and lead to
more helpful insights in particular for staff working closely with families in their
homes. This could be in the form of group supervision during which staff collec-
tively reflect on case studies and share examples of effective ways of working col-
laboratively with families from ethnic backgrounds.
Interactions with services
South Asian understandings of disability based on cultural and religious beliefs
can become an issue when people come into contact with services, as their needs
may not be matched (Azmi et al. 1997; Hatton et al. 1998; Hensel et al. 2005).
Parents’failure to engage with treatment plans may be seen as non-compliance,
rather than as based on a different understanding. In return, parents may feel
judged and unable to identify with health professional views, which can lead to
poor service uptake (Bywaters et al. 2003; O’Hara and Martin 2003). South Asian
954 K. Heer et al.
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families tend to have a greater awareness of general services such as doctors (Kat-
bamna et al. 2002), but a limited understanding of specialist services such as
speech therapists and psychologists (Chamba et al. 1999; Hatton et al. 2002). It is
important to note that difficulties in accessing services are not unique to ethnic
communities alone and are often reported by white communities in the United
Kingdom (Fazil et al. 2002). In spite of this, it appears that these difficulties and
barriers are increased for South Asian communities, and may be viewed in terms
of a social model framework.
The social model views disability as being created by societal and attitudinal
barriers. For South Asian families these can include discrimination, inequalities in
service uptake, isolation, material disadvantage and racial abuse (Chakraborty and
McKenzie 2002; Nadirshaw 1997). Societal barriers and negative attitudes faced by
South Asian families are often further exaggerated by additional factors such as lan-
guage barriers. South Asians in the United Kingdom speak a wide range of lan-
guages; however, there are no data identifying the number of people speaking a
certain language. Language has been identified as a barrier to service uptake and
delivery of specialist disability services (Bywaters et al. 2003; Raghavan and Small
2004). In a recent study, Hatton et al. (2010) compared the impact of caring for a
family member with learning disabilities on ‘majority’and ‘minority’families in
the United Kingdom. They found that the minority families had reduced ‘human
capital’, which refers to a limited understanding of learning disabilities, linked to
not being able to use the English language. Language barriers can leave parents
reliant on their non-disabled children to act as interpreters during consultations with
health professionals (Raghavan and Pawson 2009). This highlights a demand for
translators, interpreters and more trained staff from ethnic backgrounds with whom
families can identify (Fazil et al. 2002; Hatton et al. 2003; Summers and Jones
2004). Currently the National Health Service has no regulated training or require-
ments for interpreters, which means that there is no means of assessing the accuracy
of information exchange between service users, service providers and interpreters
(Tribe and Raval 2003).
It is also important to consider the social barriers faced by children with dis-
abilities themselves in terms of the day-to-day living with a disability. Connors
and Stalker have contributed to the literature examining childhood experiences,
and found that children with disabilities are likely to face a number of societal
barriers including limited information about the cause and nature of their impair-
ments, material, structural and institutional barriers to doing activities and feelings
of social exclusion, due to people’s negative attitudes (Connors and Stalker 2007;
Stalker and Connors 2003). Literature suggests that South Asian children with
learning disabilities tend to experience similar social barriers and exclusion as their
White counterparts (Ali et al. 2001; Azmi et al. 1997; Raghavan and Waseem
2007).
However, South Asian disabled children may face ‘double discrimination’based
on their disability and their ethnic identity (Azmi et al. 1997). Azmi et al. con-
ducted 21 interviews with South Asian adolescents and adults with learning disabili-
ties, and found that 63% felt they had been treated unfairly due to their ethnicity
and 57% due to their disability. They also highlighted that day services failed to
consider their religious customs and dietary needs. This has been described as
‘institutional racism’(Azmi et al. 1997; Chamba et al. 1999) and is indicated by
poor-quality service provision for ethnic communities. Experiences of racism can
Disability & Society 955
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make families sceptical and cynical about the intentions of service providers and
their motivations (Hatton et al. 2002).
Recently, England has seen a focus on service user involvement in social
care since the introduction of papers such as the Department of Health’s (2006)
Our Health, Our Care, Our Say: A New Direction for Community Services and
the Local Government and Public Involvement in Health Act (Parliament of the
United Kingdom 2007). Such incentives promote the need for local authorities
to inform, consult with and involve service users regarding the running of ser-
vices. However, attempts to engage ethnic service users have been limited
(Begum 2006). It appears that more needs to be done in order to appropriately
allow minority ethnic service users to fully participate in service design and
delivery. This would require tackling barriers to service involvement including
fear, lack of trust, language barriers and misconceptions amongst service provid-
ers that participation amongst ethnic communities is not a priority (Begum
2006).
Interactions with services appear to be influenced by all three components of the
experiential–contextual framework. South Asians’cultural beliefs (minority experi-
ence) about learning disabilities coupled with language barriers and cultural inap-
propriateness of services (social model) can reduce uptake and affect interactions
with medical services and interventions (medical model). It is clear that South
Asians are an underserved group with regards to information and access to special-
ist services. According to Raghavan and Pawson (2009), improving service aware-
ness and accessibility could be achieved by having a single point of contact, rather
than complex service infrastructures. Outreach programmes targeting community
venues such as general practitioners’surgeries and health centres that are frequently
accessed by under-represented communities such as South Asians could help to pro-
mote awareness.
Support groups may function as a form of outreach work and may help to
empower and advocate the needs of ethnic communities. For example, the Joseph
Rowntree Foundation (Singh 2005) provided funding to four organisations support-
ing black and minority ethnic individuals with a range of mental health problems
and learning disabilities. A review of the projects highlighted the need to recognise
the existence of multiple identities as an important factor to appropriate service
delivery (Singh 2005). Such support groups adopt the principles of the social model
by removing societal barriers such as racism and language barriers. However, they
can segregate ethnic communities from mainstream services and in doing so rein-
force misconceptions that mainstream services are for majority groups only. They
also tend to be a temporary solution, often relying heavily on limited charitable
funding. Instead, incorporating the techniques used by specialist groups into main-
stream services may better allow them to deliver culturally appropriate care on a
permanent basis.
Creating more culturally appropriate services may involve making changes to
service structures at surface and deeper levels (Resnicow et al. 1999). According to
Resnicow, changes to the surface structure involve matching interventions, resources
and messages to the characteristics of the target population, so that they are more
likely to be understood and accepted. Deeper-rooted changes include an apprecia-
tion of the role of religion, family and society in shaping people’s experiences.
Adopting such changes could lead to more coherent and representative services for
ethnic communities.
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Minority group pressures
South Asians caring for a child with learning disabilities may face additional strains
from within their own communities, in the form of negative attitudes and expecta-
tions (Bywaters et al. 2003; Fazil et al. 2002; Hatton et al. 2002). This is in keeping
with a social model of disability, which views ‘disablist’attitudes as a major com-
pounding factor for individuals with learning disabilities and their families (Oliver
1996; Oliver and Barnes 1998). This can lead to isolation and rejection of families
from communities and can influence family honour and shame (Katbamna et al.
2004). Such negative attitudes are usually linked to a lack of understanding and
awareness, and may be counteracted by providing families with relevant information
about the causes and management of disabilities.
There appears to be an important interplay between the ethnic minority experi-
ence and the social model. Within the South Asian sub-culture there are cultural
expectations and norms, which greatly influence the way in which families respond
to learning disabilities. These cultural expectations and norms can conflict with wes-
tern expectations and norms and further add to the complexity of the situation.
Stigma amongst the community can influence service uptake whereby families may
want to access services, but do not, in fear that they will be judged by their com-
munity. Amongst South Asian communities there can be a strong emphasis on the
obligation of families to care for family members themselves, which can lead to
negative attitudes towards the use of services, such as day centres and respite care
(Katbamna et al. 2004). However, it is uncertain whether this is due to cultural pref-
erences or whether it is linked to a lack of trust in western services. A common ste-
reotype is that South Asian families receive support in the form of extended
families (Fazil et al. 2002). This misconception has been challenged by Katbamna
et al. (2004), who found that South Asian carers received limited support from
extended families. This study has the advantage of being one of the few studies
using a sample of carers from a range of ethnic backgrounds, including 105 carers
from Punjabi Sikh, Gujarati Hindu and Bangladeshi and Pakistani Muslim commu-
nities.
The UK ‘person-centred planning’approach used by learning disability services
tends to incorporate individualistic values, and to focus on the person with intellec-
tual disabilities. This tends to be a rather universalist approach, assuming that the
experiences of disability are similar for everyone. When working with South Asian
families it may be important to consider the dynamics of the family as a system,
and their place within their community, in order to deliver appropriate support. This
highlights the potential for incorporating ‘person and family centred approaches’
when working with South Asian families.
In keeping with the social model and principles of normalisation, it is important
to promote the social inclusion of people with learning disabilities in ethnic com-
munities, and to challenge stigmatising views. Principles such as normalisation and
social role volarisation (Wolfensberger 1983) promote the inclusion of people with
learning disabilities and the removal of societal prejudices and beliefs that lead to
the devaluation of certain groups, such as those with disabilities or even people
from different ethnic groups, and have been recent drivers for change. Inclusion
would be reliant on more funding and resources for South Asian communities who,
in the United Kingdom, have been shown to face extensive material disadvantage
and discrimination when compared with their White counterparts (Hatton et al.
Disability & Society 957
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2002). This disadvantage is thought to be higher amongst Pakistani and Banglade-
shi communities and is further compounded by a general lack of awareness of bene-
fits, resources and language barriers (Chamba et al. 1999). Strategies to reduce
stigma in ethnic communities would be likely to rely on a multidisciplinary
approach, consisting of healthcare staff, outreach workers, religious leaders, as well
as advocates from within the community, in order to make them effective. Much of
the work on reducing stigma in South Asian communities has concentrated on men-
tal health in general rather than learning disabilities. The government have intro-
duced ‘mental health promotion’(National Institute for Mental Health in England
2004) strategies to increase awareness and information about mental health issues
within South Asian communities, in order to reduce fears and stigma. The difficulty
of evaluating the effectiveness of such initiatives is that they often have no or poor
outcome measures.
The influence of acculturation and diversity within ethnic groups
Factors such as acculturation (Berry 1997) over generations can affect the influ-
ence of models of disability in making sense of disability. Second-generation
South Asians will be exposed to their parent’s cultural heritage and values
within the context of a British society. Research examining generational differ-
ences in relation to South Asian populations in England is limited (Ghuman
2003; Robinson 2009). Much of the research examining how South Asians
respond to bi-cultural influence has revealed differences between first-generation
and second-generation South Asians. First generations have been shown to
favour ‘separation’, whereby they maintain their South Asian cultural heritage
and reject the British influence (Anwar 1998; Shaw 2000). Conversely, second-
generation South Asians may be more likely to integrate into British culture
whilst still maintaining some degree of their ethnic identities (Azmi et al. 1997).
However, the degree of integration appears to be influenced by cultural and reli-
gious identities. For example, Robinson (2009) found that second-generation
Indians were more likely to integrate into British culture and adopt stronger
national identities than their Pakistani counterparts, who showed a greater prefer-
ence for separation and held stronger ethnic identities.
Acculturation may affect service uptake amongst South Asian families. For
example, Hatton et al. (1998) found that South Asian parents who could speak
English were more likely to report having more information about their child’s
disability, as well as a greater awareness of services available. This in turn can
greatly influence the interplay between the components of the proposed experien-
tial–contextual framework. Second generations are likely to be exposed to ‘Brit-
ish’values and beliefs as well as to have interactions with educational and
medical organisations. Therefore western models and views of disability may
become more prominent for second-generation South Asians.
The situation is further complicated by the complexity of the term ‘South
Asian’. There is tendency for society to assume that South Asians are a homo-
geneous group, who share cultural practices and beliefs. In reality they are a
culturally diverse and heterogeneous group. South Asians are made up of a
number of sub-groups such as Indian-Punjabi, Indian-Gujarati and Pakistani-Mir-
puri. Each group has their own languages, religious practices and migration
histories. Within each group, there is often great variation in terms of educa-
958 K. Heer et al.
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tion level, financial status and degree of acculturation. The heterogeneity of
‘South Asians’is likely to influence the interplay between the components of
the experiential–contextual framework and how they impact on the experiences
of caring for a child with learning disabilities. Individual positions on cultural
and ethnic identity tend to be more complex and may be influenced by multi-
ple practices.
Conclusion
The experiences of South Asian families caring for a child with learning disabilities
are multifaceted. This paper has demonstrated a large overlap between three models
of disability (medical, social and minority) in terms of their influence in shaping the
experiences of South Asian families. In particular, it has highlighted the significant
role of the social model in highlighting the multiple social barriers faced by South
Asian families and children with disabilities when accessing services, and from
society in general.
However, the social model alone is limited in its application to South Asian
families and children with disabilities. It tends to focus on material factors in shap-
ing the lives of people with disabilities (employment, legislation and environmental
factors) (Watson 2004, 105–106). In so doing it ignores the lived experiences of
people with disabilities, which tend to be unique and specific to each individual.
The social model views disabled people as a collective group and consequently
overlooks individual differences such as race, sexuality and class (Swain and French
2000). Ethnic identity, in particular, as outlined in this article, may have a signifi-
cant influence on the experiences of South Asian families in the United Kingdom.
In interacting with the disability it can lead to the multiple oppression of people
with disabilities. Unfortunately the social model pays little attention to how percep-
tions and experiences of disability are culturally constructed or vary overtime, and
across generations (Shakespeare and Watson 2002) and different societies (Barnes
and Mercer 1997).
Additionally, the social model appears to completely reject medical or biological
factors in shaping the lives of people with disabilities. The social model views
impairment and disability as two separate factors, with disability being caused by
society rather than by impairment (Oliver 1996). This is in contrast to medical
views of disability that focus on disability being caused by impairments with bio-
logical aetiology (e.g. disease, genetics, trauma). Recently, critics of the social
model have suggested shifting focus onto the interactions between biological
impairment and disability and society. In so doing they have suggested a reforma-
tion of the social model to incorporate a ‘socio-medical’perspective on disability,
focusing on the biological basis of impairment whilst at the same time recognising
the role of social and cultural factors in amplifying these impairments (Bury 1996,
18–22).
Shakespeare (2006) has also proposed a more holistic model of disability that
focuses on integrating individual and medical perspectives alongside consideration
for impairment. Swain and French (2000) have proposed an ‘affirmation model’of
disability, which embraces differences such as race, sexuality, gender and age.
These ideas are compatible with the experiential–contextual framework described in
this paper. However, the experiential–contextual framework is more applicable to
South Asians in the United Kingdom because it considers the unique experiences of
Disability & Society 959
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individuals with disabilities, and their families, and how these experiences are
shaped by society and context.
There has been little research examining how cultural factors influence the expe-
riences of families caring for an individual with disabilities. However with an
increasingly multi-ethnic population, this issue is likely to grow in importance.
Additionally, there is a need for applied research into the perspectives and experi-
ences of children. Much of the research as mentioned earlier is based on non-dis-
abled adults’perspectives. Studies have demonstrated that disabled children are
likely to face social and material barriers (Connors and Stalker 2007; Stalker and
Connors 2003). However, little has been done to explore the lived experiences of
disabled children from minority groups. This is important as it provides unique
insight into the individual experiences of living with disability and how these expe-
riences are shaped by the cultural context.
The experiential–contextual framework has demonstrated how the interplay
between minority experience and the medical and social models can be used to
understand the experiences of South Asian families caring for an individual with
learning disabilities. In Valuing People Now (Department of Health 2009) the UK
Government have highlighted the need to promote the advocacy and inclusion of
people from ethnic-minority communities in caring for a person with intellectual
disabilities. A key component in promoting this change is enhancing the cultural
competence of service providers. The experiential–contextual framework provides a
basis for services and practitioners to better understand ethnic families within a
wider socio-cultural context. Thus, it avoids making assumptions and stereotypes
based on cultural or religious identity alone.
References
Ali, Z., Q. Fazil, P. Bywaters, L. Wallace, and G. Singh. 2001. Disability, ethnicity and
childhood: A critical review of research. Disability and Society 16: 19–67.
Anwar, M. 1998. Between cultures: Continuity and change in the lives of young Asians.
London: Routledge.
Azmi, S., E. Emerson, A. Caine, and C. Hatton. 1996. Improving services for Asian people
with learning disabilities and their families. Manchester: Hester Adrian Research Centre/
Mental Health Foundation.
Azmi, S., C. Hatton, E. Emerson, and A. Caine. 1997. Listening to adolescents and adults
with disabilities from South Asian communities. Journal of Applied Research in Intellec-
tual Disabilities 10: 250–63.
Barnes, C., and G. Mercer, eds. 1997. Doing disability research. Leeds: The Disability
Press.
Begum, N. 2006. Doing it for themselves: Participation and black and minority ethnic ser-
vice users. Bristol: Policy Press.
Berry, J.W. 1997. Immigration, acculturation and adaptation. Applied Psychology 46: 5–68.
Bogdan, R., and S. Taylor. 1982. Inside out: The social meaning of mental retardation. Tor-
onto: University of Toronto Press.
British Sociological Association. 2005. Equality and diversity. Language and the BSA: Eth-
nicity & race. http://www.britsoc.co.uk/equality/.
Bury, M. 1996. Defining and researching disability: Challenges and responses. In Implement-
ing the social model of disability: Theory and research, ed. C. Barnes and G. Mercer,
18–38. Leeds: The Disability Press.
Bywaters, P., Z. Ali, Q. Fazil, L.M. Wallace, and G. Singh. 2003. Attitudes towards disabil-
ity amongst Pakistani and Bangladeshi parents of disabled children in the UK: Consider-
ations for service providers and the disability movement. Health and Social Care in the
Community 11: 502–9.
960 K. Heer et al.
Downloaded by [King's College London] at 03:13 02 January 2013
Campbell, J., and M. Oliver. 1996. Disability politics: Understanding our past, changing
our future. London: Routledge.
Chakraborty, A., and K. Mckenzie. 2002. Does racial discrimination cause mental illness?
The British Journal of Psychiatry 180: 475–7.
Chamba, R., W. Ahmad, M. Hirst, D. Lawton, and B. Beresford. 1999. On the edge: Minor-
ity ethnic families caring for a severely disabled child. Bristol: Policy Press.
Connors, C., and K. Stalker. 2007. Children’s experiences of disability: Pointers to a social
model of childhood disability. Disability & Society 22: 19–33.
Croot, E.J., G. Grant, C.L. Cooper, and N. Mathers. 2008. Perceptions of the causes of
childhood disability among Pakistani families living in the UK. Health and Social Care
in the Community 16: 606–13.
Daley, T.C. 2004. From symptom recognition to diagnosis: Children with autism in urban
India. Social Science & Medicine 58: 1323–35.
Department of Health. 1999. Caring about carers: The report of the national carers strategy.
London: The Stationery Office.
Department of Health. 2004. Learning difficulties and ethnicity: A framework for action.
London: Department of Health.
Department of Health. 2006. Our health, our care, our say: A new direction for community
services. Norwich: The Stationery Office.
Department of Health. 2009. Valuing people now: A new three-year strategy for people with
learning disabilities. London: The Stationery Office.
Department of Health and Social Security. 1971. Better services for the mentally handi-
capped. London: HMSO.
Emerson, E., and C. Hatton. 2004. Response to McGrother et al. (Journal of Intellectual
Disability Research, 46, 299–309) ‘The prevalence of intellectual disability among
South Asian communities in the UK’.Journal of Intellectual Disability Research 48:
201–2.
Emerson, E., S. Azmi, C. Hatton, A. Caine, R. Parrott, and J. Wolstenholme. 1997. Is there
an increased prevalence of severe learning disabilities among British Asians? Ethnicity
and Health 2: 317–21.
Fazil, Q., P. Bywaters, Z. Ali, L. Wallace, and G. Singh. 2002. Disadvantage and discrimina-
tion compounded: The experience of Pakistani and Bangladeshi parents of disabled chil-
dren in the UK. Disability and Society 17: 237–53.
Ferguson, P.M., D.L. Ferguson, and S. Taylor. 1992. Interpreting disability: A qualitative
reader. New York: Teachers College Press.
Ghuman, P.A.S. 2003. Double loyalties: South Asian adolescents in the west. Cardiff: Uni-
versity of Wales Press.
Government Equalities Office. 2010. The Equality Act 2010. London: The Stationery Office.
Hatton, C. 2007. The improving services for people with learning disabilities from ethnic
communities. Report on the second national survey of partnership boards. Lancaster:
Lancaster University.
Hatton, C., Y. Akram, J. Robertson, R. Shah, and E. Emerson. 2003. The disclosure process
and its impact on South Asian families with a child with severe intellectual disabilities.
Journal of Applied Research in Intellectual Disabilities 16: 177–88.
Hatton, C., Y. Akram, R. Shah, J. Robertson, and E. Emerson. 2002. Supporting South Asian
families with a child with severe disabilities. Lancaster: Institute for Health Research,
Lancaster University.
Hatton, C., S. Azmi, A. Caine, and E. Emerson. 1998. Informal carers of adolescents
and adults with learning difficulties from the South Asian communities: Family cir-
cumstances, service support and carer stress. British Journal of Social Work 28:
821–37.
Hatton, C., E. Emerson, S. Kirby, H. Kotwal, S. Baines, C. Hutchinson, C. Dobson, and B.
Marks. 2010. Majority and minority ethnic family carers of adults with intellectual dis-
abilities: Perceptions of challenging behaviour and family impact. Journal of Applied
Research in Intellectual Disabilities 23: 63–74.
Hensel, E., M. Krishna, K. Saunders, N. Durrani, and J. Rose. 2005. Impact of policy shifts
on South Asian Carers in the United Kingdom. Journal of Policy and Practice in Intel-
lectual Disabilities 2: 10–7.
Disability & Society 961
Downloaded by [King's College London] at 03:13 02 January 2013
Katbamna, S., W. Ahmad, P. Bhakta, R. Baker, and G. Parker. 2004. Do they look after their
own? Informal support for South Asian carers. Health & Social Care in the Community
12: 398–406.
Katbamna, S., R. Baker, W. Ahmad, P. Bhakta, and G. Parker. 2001. Development of guide-
lines to facilitate improved support of South Asian carers by primary health care teams.
Quality in Health Care 10: 166–72.
Katbamna, S., P. Bhakta, W. Ahmad, R. Baker, and G. Parker. 2002. Supporting South
Asian carers and those they care for: The role of the primary health care team. British
Journal of General Practice 52: 300–5.
Mental Health Act. 1959. 7 and 8 Eliz 2. London. HMSO.
Nadirshaw, Z., ed. 1997. Cultural issues. In Adults with learning disabilities: A practical
approach for health professionals, 139–53. Chichester: John Wiley & Sons.
National Institute for Mental Health in England. 2004. Celebrating our cultures: Guidelines
for mental health promotion within South Asian community. London: DOH.
O’Hara, J., and H. Martin. 2003. Parents with learning disabilities: A study of gender and
cultural perspectives in East London. British Journal of Learning Disabilities 31:
18–24.
Oliver, M. 1996. Understanding disability: From theory to practice. Basingstoke: Macmillan.
Oliver, M., and C. Barnes. 1998. Social policy and disabled people: From exclusion to
inclusion. London: Longman.
Parliament of the United Kingdom. 2005. The Disability Discrimination Act 2005. London:
The Stationery Office.
Parliament of the United Kingdom. 2007. Local Government and Public Involvement in
Health Act 2007. London: The Stationery Office.
Raghavan, R., and N. Pawson. 2009. The Awaaz project: Meeting the leisure needs of young
people with a learning disability from South Asian communities. London: MENCAP.
Raghavan, R., and N. Small. 2004. Cultural diversity and intellectual disability. Current
Opinion in Psychiatry 17: 371–5.
Raghavan, R., and F. Waseem. 2007. Services for young people with learning disabilities
and mental health needs from South Asian communities. Advances in Mental Health and
Learning Disabilities 1, no. 3: 27–31.
Resnicow, K., R. Braithwaite, J. Ahluwalia, and T. Baronowski. 1999. Cultural sensitivity in
public health: Defined and demystified. Ethnicity and Disease 9: 10–2.
Robinson, L. 2009. Cultural identity and acculturation preferences among South Asian ado-
lescents in Britain: An exploratory study. Children and Society 23: 442–54.
Shakespeare, T. 2006. Disability rights and wrongs. Abingdon: Routledge.
Shakespeare, T., and N. Watson. 2002. The social model of disability: An outdated ideol-
ogy? Research in Social Science and Disability 2: 9–28.
Shaw, A. 2000. Kinship and continuity: Pakistani families in Britain. Amsteldijk: Harwood
Academic Publishers.
Singh, B. 2005. Making change happen for black and minority ethnic disabled people. York:
Joseph Rowntree Foundation.
Skinner, D., and T.S. Weisner. 2007. Sociocultural studies of families of children with intel-
lectual disabilities. Mental Retardation and Developmental Disabilities Research Reviews
13: 302–12.
Stalker, K., and C. Connors. 2003. Communicating with disabled children. Adoption & Fos-
tering 27: 26–35.
Sue, D.W., and D. Sue. 1999. Counselling the culturally different: Theory and practice. 3rd
ed. New York: John Wiley & Sons.
Summers, S.J., and J. Jones. 2004. Cross-cultural working in community learning disabilities
services: Clinical issues, dilemmas and tensions. Journal of Intellectual Disability
Research 48: 687–94.
Swain, J., and S. French. 2000. Towards an affirmative model of disability. Disability &
Society 15: 569–82.
Tribe, R., and H. Raval. 2003. Working with interpreters in mental health. London: Brunner-
Routledge.
Union of the Physically Impaired Against Segregation. 1976. Fundamental principles of dis-
ability. London: UPIAS.
962 K. Heer et al.
Downloaded by [King's College London] at 03:13 02 January 2013
Watson, N. 2004. The dialects of disability: A social model for the 21
st
century?In Imple-
menting the social model of disability: Theory and research, ed. C. Barnes and G. Mer-
cer, 101–17. Leeds: The Disability Press.
Wolfensberger, W. 1983. Social role valorization: A proposed new term for the principle of
normalisation. Mental retardation 21: 234–9.
Disability & Society 963
Downloaded by [King's College London] at 03:13 02 January 2013
