Gamze Kaplan
Pinar Celik- 1Division of Psychology and Mental Health, School of Health Science, Faculty of Biology, Medicine and Health, University of Manchester, Manchester, United Kingdom
- 2Department of Education, Faculty of Art, Humanities and Social Sciences, School of Social Sciences, Queen’s University of Belfast, Belfast, United Kingdom
This article explores the intersectionality of cultural and linguistic diversity and having a child with a disability, highlighting the unique challenges faced by parents from a minority ethnic background at this intersection. With increasing globalization, diverse and multicultural populations have become more prevalent, necessitating inclusive systems that address the unique needs of minority ethnic groups. Understanding the experiences of parents at the intersection of cultural and linguistic diversity and having a child with a disability is crucial for providing equitable access to education and support. This paper provides an overview of studies conducted in the UK, focusing on the challenges faced by culturally and linguistically diverse families from a minority ethnic background with children with disabilities and emphasizing factors such as religion, cultural beliefs, language barriers, and unique insights into specific populations. The findings emphasize the need for a comprehensive understanding of the intersectionality of cultural and linguistic diversity and disability to create inclusive educational environments that empower all children, irrespective of their cultural background or abilities.
Introduction
Culture refers to a collective system of values, beliefs, practices, and norms that are passed down from one generation to the next within a particular group or society. These shared elements have a profound impact on individuals’ thoughts, behaviors, and social interactions (Janicijevic et al., 2018), and play a crucial role in shaping a child’s development (Rogoff, 2003). With increasing globalization, many countries have experienced a transition towards more diverse societies, characterized by the coexistence of multiple cultures (Andersone and Helmane, 2018; Torres and Tarozzi, 2019). It is important to recognize its significance in all aspects of education from birth onwards.
In the UK, minority ethnic groups make up a significant portion of the education system, accounting for 34.5% of students in general education schools and 31% in special education schools. Moreover, 19.5% of students enrolled in school systems do not speak English as their first language (Explore Education Statistics, 2023). These groups comprise diverse cultural and linguistic backgrounds, each with unique needs. Failure to address these needs can put them at a disadvantage [Department for Children, Schools and Families (DCSF), 2009]. It is crucial to design education systems that address the needs of these diverse communities, ensuring equitable access to the same educational opportunities as other groups, which refers to the majority ethnic group(s) and students who speak English as their first language. For this reason, not only the language of instruction but also cultural values, beliefs, and expectations should be taken into account while trying to create an equitable learning environment for all. Importantly, the presence of diverse ethnic backgrounds contributes unique and invaluable perspectives that can be shared and integrated into the classroom environment.
In addition to being from a minority group, having a disability creates a different experience for these children (Khanlou et al., 2014). The progression of this experience and the meaning it represents must be understood in order for these children to access the necessary education to which they are legally entitled. The intersectionality of both being a child from a minority group and having a disability gives rise to a multifaceted experience that necessitates a comprehensive understanding. By acknowledging and addressing the unique challenges faced by these children, fostering inclusive environments, and providing tailored support, society can work towards creating an educational system that empowers all children, regardless of their background or abilities.
Many cultural factors affect the perception and experience of disability and how an individual with a disability exists in society based on their cultures, including elements such as religious beliefs, value judgements, and traditions (Rogers-Adkinson et al., 2003). For a more inclusive society to be possible, it is considered necessary to understand the concept of disability in different cultures and to reveal how that concept is experienced in a culturally and linguistically diverse context (Ravindran and Myers, 2012).
Although efforts have been made since the 2000s to be more inclusive of the experiences of minority ethnic groups in disability studies, the literature still reflects a medical approach or focuses on the experiences of parents (Berghs and Dyson, 2022). Due to the problematization of disability with this medical approach, there is still a need to reposition disability with theoretical insights and illustrate the links with other social factors, including culture (Liasidou, 2012). Within the field of disability studies in education, there is a noticeable research gap regarding the insufficient recognition and incorporation of intersectionality as a vital aspect of its investigations (Walton, 2023).
The aim of this paper is to provide a review of the research that describes the views and experiences of parents in the UK who are at the intersection of being from minority backgrounds and having a child with a disability regarding the concept and identification of disability, as well as their experiences and challenges while accessing services.
Intersectionality of cultural and linguistic diversity and disability
The concept of intersectionality was introduced by the legal scholar and critical race theorist Kimberlé Crenshaw. It refers to the complex and interconnected systems of oppression faced by African-American women. Intersectionality highlights how social categories such as race and gender intersect at a micro level to shape their individual experiences and how these categories overlap to create multiple layers of discrimination and privilege (Crenshaw, 1991). She argued that although racism and sexism often intersect in people’s lived experiences, feminist and antiracist practices have historically treated them as separate issues, resulting in a gap.
Intersectionality, therefore, offers a framework for recognizing and tackling the specific obstacles encountered by people who belong to multiple marginalized groups (Randall and Curran, 2023). The notion of intersectionality has been influential traction in various fields, including education, and serves as an analytical approach for exploring the complexities of identity and power dynamics (Cole, 2009; Ferree, 2018; Byerly et al., 2023; Wright, 2023). While providing a comprehensive way of thinking (Thomas, 2020; Woods and Brink, 2021), it offers a deeper understanding of the ways in which structural discrimination operates in society (Waitoller and Artiles, 2013).
This article focuses on the intersection of cultural and linguistic diversity and disability, specifically within the context of being a parent of a child with a disability while also belonging to a minority ethnic group in Western society in the UK. The researchers adopted an intersectional approach to investigate how parents from ethnic minority backgrounds navigate the intersection of marginalization and oppression stemming from both their ethnic identity and their child’s disability status. By attending to the interplay of multiple systems of power and inequality, the study contributes to a more comprehensive understanding of the challenges faced by parents from marginalized backgrounds in caring for a child with a disability.
Culture is the system of values used by a society in the process of organizing individual and social lives and interpretations of existence (Ergur, 2017). Different cultures shape the interpretation that individuals give to the things that surround them (Earley, 2006) and serve as a source of identification for their members (Stahl et al., 2010). Hall (1990, as cited in Yang et al., 2021) introduced the term “cultural identity” as a means to comprehend how individuals and groups position themselves within the wider cultural landscape. They defined it as a dynamic concept embodied by a multitude of factors, including history, migration, colonization, globalization, and social interactions. These factors not only shape cultural identities but also motivate the creation of multiple ethnic and/or religious cultures that transcend national boundaries (Stahl et al., 2010; Portera, 2020). This social structure requires the application of an egalitarian approach in which every culture can progress in interaction and the development of universal approaches in various fields, including education (Lopez et al., 2000; Khanlou et al., 2014). Culture directly influences the educational expectations, values, parenting practices (Chen et al., 2002; Cheremshynski et al., 2013) and decision-making processes (Bayat, 2007; Neely-Barnes and Dia, 2008; Dinora and Bogenschutz, 2018) within families.
Within the context of disability, cultural factors play a crucial role in shaping the family’s response to disabilities, such as autism. For example, a study conducted by Habayeb et al. (2020) found that Arab-American families tend to conceal the diagnosis of autism from their extended family members and grandparents, in particular, have difficulties in understanding the child’s need for support. In contrast, in another study conducted by Sicherman et al. (2018) with a population of 60% white and 22% Hispanic participants, it is noted that grandparents notice the symptoms in the child earlier, enabling earlier diagnosis.
Therefore, considering the components of culture in the life history of a child with a disability can significantly enhance the understanding and facilitation of appropriate services. By taking culture into account, service providers can gain valuable insights into the child’s background and parents’ beliefs, values, and traditions, which can influence their perceptions of disability and their expectations for support.
While these components may be relatively easy to take into account and understand in the culture where parents have grown up, culture can be a form of exclusion in services received in another country due to immigration (Gencer, 2017). The existing constructions are based on Wester-centric approaches to pedagogy, and the expectation of an “ideal child/student” was created within this cultural notion, resulting in the domination and oppression of the “non-ideal” ones, leading to additional needs. Recognizing the presence of more than one form of exclusion in a child’s life multiplies these needs (Liasidou, 2012).
Many studies have shown that families from minority backgrounds who have a child with a disability face both linguistic and cultural difficulties in accessing official services and experience challenges when interacting with specialists (Fellin et al., 2013; Lindsay et al., 2014; Hanson and Espinosa, 2016). They are unable to receive services due to limited accessibility (i.e., they cannot receive normal public services because of linguistic, cultural, or disability obstacles) (Harris and Bamford, 2001).
Nevertheless, delays in language skills in the early years can be perceived as expected if the child is learning English as a second language, which may result in late recognition of the disability (Ennis-Cole et al., 2013). A study conducted by Mandell et al. (2009) showed notable racial and ethnic disparities in the identification of autism among eight-year-old children. The research indicated that children of African-American, Hispanic, Asian, and diverse ethnic backgrounds exhibited a lower likelihood in contrast to Anglo-American children in terms of having an officially documented autism diagnosis.
On the other hand, when traditional methods are used in the teaching process, unnecessary referrals to special education due to the cultural and linguistic diversity of the student may lead to misplacement [Department for Children, Schools and Families (DCSF), 2009; Ortiz et al., 2011; Hoover et al., 2016]. This is one of the major causes of confusion with children are accessing early intervention services. Therefore, it becomes imperative for all involved stakeholders to be mindful of their social and cultural approaches and beliefs (King et al., 2013).
Intersectionality of cultural and linguistic diversity and disability in the UK
According to a report published by the UK Department of Health (2001), despite statutory principles forbidding racism of any kind [Race Relations (Amendment) Act, 2000], the group characterized by cultural and linguistic diversity experiences challenges in accessing services and their families’ needs are not adequately met. On a similar note, the Building Great Britain Report (2005) and the House of Commons Health and Social Care Committee (2019) have mentioned similar access issues for culturally and linguistically diverse children and their parents and stressed the need for universal approaches. Another important point in the Building Great Britain Report (2005) is that parents have limited opportunities to express themselves and raise their concerns.
On the other hand, the Equality Act (2010) strictly prohibits any kind of unfair treatment towards people with disabilities and those who care for them. This includes both direct and indirect forms of discrimination, which are defined as “the effect of disadvantaging persons with a disability.” Similarly, in educational settings, the Department of Education and Department of Health (2015) makes it clear that no action leading to the exclusion of a child with a disability is allowed. Parents and the children themselves have the right to file complaints if they face any discrimination or attempts to exclude them. However, despite these protective regulations, several forms of exclusionary practices, including systemic forms such as off-rolling (Done et al., 2021) and societal forms such as a lack of an accessible environment and relationships (Goodley and Runswick-Cole, 2010), still persist and continue to influence the lives of both children and their parents.
Method of literature review
This literature review examined published primary research with the aim of exploring the experiences of parents in the UK who come from minority backgrounds and have a child with a disability. The studies included in this review met the following criteria: they (a) focused on parents who come from minority backgrounds and have a child with a disability, (b) were conducted in the UK, (c) were published in English, (c) were peer-reviewed and (d) were published between 2000–2023. Studies focusing on the experiences of refugee and asylum-seeker parents were excluded.
Search terms used included variations and combinations of the following keywords: Parents, children with disabilities, experiences, cultural and linguistic diversity, minority background, intersectionality, United Kingdom. These searches were applied to various databases via the Anglia Ruskin University Library’s “all library collections” service, which included Medline, PsycINFO, Sociological Abstracts, ERIC, Web of Science, JSTOR, and Scopus. Additionally, internet searches were performed using Google Scholar. Other relevant publications were sought through the references from related publications.
Using the criteria mentioned above and search methods, a total of 27 studies were identified that met the review criteria. Descriptive information about the articles, including details about the article features, minority group studied, the aim of the research, participants, data collection techniques, methods, and results, were presented in Table 1, and these findings have been interpreted accordingly.
Table 1. Studies carried out on the intersectionality of disability and cultural and linguistic diversity in the UK.
Results and discussion
To gain insight into the unique experiences at the intersection of cultural and linguistic diversity and disability, several studies have investigated the experiences of ethnic minority parents who have a child with a disability. These studies have illuminated the challenges faced by these groups and have highlighted the shortcomings of current services in addressing their needs. Table 1 provides a descriptive overview of these studies, including details such as the aim of the study, participants, methods, data collection techniques, and the findings of each study.
Aims
The academic studies conducted in the UK have focused on exploring the intersectionality of cultural and linguistic diversity and disability. These studies aim to shed light on various barriers and challenges faced by ethnic minority families with children with disabilities while also providing unique insights into the experiences of these families. The factors investigated include:
• The influence of religion on parental views regarding disability (Bywaters et al., 2003; Croot et al., 2008, 2012; Heer et al., 2012; Rizvi, 2017; Aabe et al., 2019; Hussein et al., 2019).
• The importance of cultural factors in shaping the experiences and perceptions of families (Fazil et al., 2002; Hatton et al., 2010; Heer et al., 2012; Selman et al., 2018; Aabe et al., 2019; Hussein et al., 2019).
• The role of language and communication barriers in creating challenges for families and service providers (Fazil et al., 2002; Bywaters et al., 2003; Hatton et al., 2003; Raghavan and Waseem, 2007; Heer et al., 2014; Sandhu et al., 2016; Fox et al., 2017).
Participants
In the context of United Kingdom’s diverse cultural landscape, extensive research has been dedicated to understanding the experiences of minority groups. Among the studies reviewed, seven studies focused on a variety of minority groups, while 17 studies specifically focused on the experiences of South Asian participants, including those of Indian, Bangladeshi, and/or Pakistani origin. According to Office for National Statistics (2021), the largest ethnic group in the UK, other than the White group, was “Asian, Asian British or Asian Welsh,” comprising 9.3% of the population.
Six studies included African parents, and four of these specifically focused on Somali parents. Notably, a study conducted by Barnevik-Olsson et al. (2008) in Stockholm, compared Somali and non-Somali background children with regard to the overrepresentation of autism. The study found that the prevalence of autism in children of Somali origin was three to four times higher than among non-Somali background children, and all the autistic Somali background children in their study had a comorbid learning disability. The significant representation of demographic groups could lead to increased research enquiries in these areas.
Additionally, one study focused on Turkish, Kurdish, and Cypriot Turkish parents. The Essex County Council (2011) noted that child second language learners of Turkish origin experienced challenges in special education referrals because issues related to a disability and language problems could be confused. Notably, research on children of Turkish origin with a disability and their parents is very limited in England (Sandhu et al., 2016). This emphasizes the importance of addressing the specific needs and experiences of this underrepresented group in research and services.
The majority of studies analyzed in this review specifically examined parents from South Asian backgrounds. However, it is important to note that cultural influences on parenting may vary considerably between South Asian countries and those coming from other cultural and ethnic backgrounds (e.g., Africa, the Middle East, and Latin America). Therefore, considering this diversity is crucial when interpreting the findings of this review. The United Kingdom’s diverse population necessitates additional research involving various communities to better understand the intricacies of each culture and its interface with the prevailing societal framework.
Methods
The majority of studies included employed qualitative research methods, utilizing a range of methodological approaches such as; phenomenology (Hatton et al., 2010; Heer et al., 2012, 2014, 2015; Munroe et al., 2016), collaborative approaches like action research (Fazil et al., 2002; Bywaters et al., 2003) and community-based participatory research (Fox et al., 2017; Selman et al., 2018; Aabe et al., 2019), intersectional frameworks (Rizvi, 2017; Rizvi, 2018), case-study approaches (Oliver and Singal, 2017), narrative approaches (Sandhu et al., 2016), and grounded theory (Hubert, 2006). While a few studies incorporated both quantitative and qualitative methods (Hatton et al., 2003; Hussein et al., 2019), four studies used quantitative survey designs through secondary data analysis (Devapriam et al., 2008), cross-sectional studies (Durà-Vilà and Hodes, 2009), and Delphi consultation (Bonell et al., 2012). The reviewed studies employed diverse methodological approaches, contributing to a comprehensive understanding of the subject matter and indicating a significant reliance on qualitative approaches to explore the topic.
Quantitative and qualitative approaches each have their own strengths and weaknesses. Quantitative methods, particularly survey designs, facilitate efficient data collection, examination of attitudes and opinions, and the surveying of geographically dispersed individuals (Creswell, 2015). On the other hand, qualitative research plays a crucial role in generating suitable questions, developing hypotheses, and providing a deeper understanding of human processes (Bölte, 2014). While survey designs allow researchers to identify trends and gain initial insights into experiences, qualitative methods offer a more comprehensive approach. Phenomenology, in particular, was frequently employed in the studies reviewed. Its focus on the meaning of the relationship between individuals (Merriam and Tisdell, 2016) and their world holds promise for exploring life experiences and obtaining profound insights into them (Gay et al., 2009; Taylor et al., 2016). Nonetheless, it is worth noting that the reliance on specific study designs by the same research groups highlights a lack of variety in the application of these approaches.
Data collection techniques
In line with the chosen methods, interviews, which are considered one of the fundamental data collection techniques in qualitative research (Creswell, 2015), were widely employed in the studies. Through open-ended conversations, participants were able to share their stories and emotions, providing researchers with a rich understanding of the complex dimensions of disability within cultural contexts. In-depth interviews facilitated insights into the lived experiences and unique challenges faced by culturally and linguistically diverse families with disabilities. For instance, Hubert (2006) employed informal interviews to explore the perspectives of individuals caring for an individual with a learning disability, encompassing various Caribbean, Indian, and East African backgrounds.
Results
Among these groups, the influence of religion on perspectives regarding disability emerges as a significant common factor. Notably, Heer et al. (2012) focused their study on Indian Sikh and Pakistani Muslim participants, shedding light on how parents within these communities frequently relied on religious definitions and coping mechanisms to interpret their child’s disability. This reliance on religious beliefs raises questions about the potential implications for educational psychology. Bywaters et al. (2003) revealed that despite believing that the lives of children with disabilities were in God’s hands, Pakistani and Bangladeshi families still sought professional support. While this suggests an inclination to integrate secular assistance, it is crucial to examine the extent to which religious perspectives may limit or enhance the effectiveness of educational interventions. Similarly, Croot et al. (2008) found that Pakistani families often interpreted disability as a test or punishment from God or as God’s will and a gift. Such interpretations, rooted in religious ideologies, raise concerns regarding the potential impact on parental attitudes and expectations regarding their children’s educational experiences.
Likewise, Heer et al. (2012) highlighted that Indian Sikh and Pakistani Muslim parents perceived their child’s disability as either God’s decision or as a consequence of their own past actions. These explanations, based on religious beliefs, may shape parental attitudes towards seeking specialized educational support and addressing their children’s unique learning needs. Rizvi (2017) reported that British Pakistani parents regarded their children with disabilities as both a blessing and a punishment from God while concurrently drawing strength from their faith to cope with the challenges. These intertwined notions of blessings and punishments, rooted in religious convictions, may have implications for how parents engage with educational professionals and their receptiveness to inclusive educational practices. Moreover, Hussein et al. (2019) uncovered the fact that Somali parents viewed their faith as instrumental in accepting a child with autism. However, their occasional attribution of the cause of autism to supernatural entities like ‘jinn’ and reliance on faith-based figures like sheikhs for support raise questions about the potential impact on seeking evidence-based educational interventions and fostering a comprehensive understanding of autism within the community.
The findings of studies conducted in Australia and Thailand parallel observations in UK-based studies, emphasizing the significant role of religion in shaping attitudes towards disability. King et al. (2016) found that participants from Southeast and South Asia in Australia described disability as the result of ‘karma’ or punishment for past wrongdoings. This negative perception led to poor treatment, stigma, and feelings of guilt and shame among individuals with disabilities. Similarly, King and King (2011) observed stigmatization based on religious beliefs in Thailand, where disability was seen as a consequence of karma or past deeds, resulting in mistreatment and limited advocacy. Addressing these cultural beliefs and biases is crucial for promoting inclusive education and support for individuals with disabilities in diverse cultural contexts.
One of the most consistent points is the importance of cultural factors in shaping the experiences and perceptions of families having a child with a disability. For example, Heer et al. (2012) found that cultural beliefs about disability, such as the belief that it is caused by bad behaviors during pregnancy, can impact how families manage their child’s condition. Similarly, in Chinese communities, parents may be held responsible for their child’s disability, leading to stigmatization and reluctance to seek essential services (Liu and Fisher, 2017). Bywaters et al. (2003) also revealed that professionals working with children with disabilities from minority ethnic backgrounds may have limited views due to ableist and sexist approaches, lack of information, and incorrect interpretation of cultural and social constructs. However, other studies, such as Croot et al. (2012) and Gilligan (2013), highlight that cultural beliefs can also shape attitudes towards care and treatment, emphasizing the need for culturally responsive approaches to education and training. These findings demonstrate the importance of greater cultural awareness and sensitivity among professionals working with children from diverse backgrounds. Despite the negative experiences reported by families from minority ethnic backgrounds (Hatton et al., 2010), Su (2007) found that Taiwanese immigrant families with disabled children expressed overall satisfaction with their lives in the United States. They attributed this to the integration of their own cultural values into parenting and practical skills learned from the mainstream culture, which empowered them to deal with their child’s disabilities more effectively.
Another common point is the role of language and communication barriers in creating challenges for families and service providers. Fazil et al. (2002) found that Pakistani and Bangladeshi parents who have children with disabilities face multiple barriers to accessing support, including economic barriers, communication problems, and limited support from extended family. This issue is particularly acute for families who have recently migrated, as they may lack familiarity with the culture and customs of the host country, which may result in significant obstacles in accessing basic services, such as housing, nutrition, and heating, when they arrive in the UK. Consistently, an integrative review of 25 studies conducted in various countries, including Australia, Canada, the United Kingdom, and the United States, identified a comparable issue among immigrant parents who have a child with a disability. Additionally, the review highlighted that a lack of awareness of basic rights hindered parents’ help-seeking behavior (Alsharaydeh et al., 2019).
Due to these barriers, parents may struggle to communicate effectively with social services and may not know what is expected of them. In order to address this issue, it is crucial for individuals to seek out support systems that can improve their information literacy regarding the social and formal sources of the community and government. Charities such as Doosti1 and IMECE2 aim to promote the integration of migrants and refugees into the community and to support them in building the capacity to access support services independently.
The process of identifying and accessing disability services for children is often challenging, particularly when the diagnostic procedures are conducted in English, as this can lead to confusion amongst parents/guardians who do not speak the language. Studies conducted by Heer et al. (2014), Fox et al. (2017), and Oliver and Singal (2017) emphasize the difficulties faced by families who are caring a child with a disability and do not speak the language of the host country, resulting in increased barriers to accessing services, communicating with providers, and navigating complex care systems.
Similarly, Hubert (2006) found that although carers express satisfaction with services, these remain limited and inadequate. These challenges align with findings from other countries, where parents’ limited proficiency in the dominant language also hampers effective communication with service providers and their understanding of available services (Miller-Gairy and Saul Mofya, 2015; Sakai et al., 2019). The absence of translated materials compounds the language barrier (Sakai et al., 2019). Moreover, the use of specialized terminology by educators and medical professionals poses additional challenges for parents in comprehending and accessing services (Jegatheesan et al., 2010; You and Rosenkoetter, 2014; Khanlou et al., 2017).
These findings underscore the universal nature of barriers faced by immigrant families with children with disabilities. Regardless of the country, language proficiency and cultural perceptions of child development significantly influence parents’ ability to access services, comprehend the diagnostic process, and effectively engage with healthcare professionals. In order to address these challenges, it is imperative to develop inclusive practices that consider linguistic diversity and cultural beliefs and that provide accessible resources. Culturally appropriate explanations and support from professionals are essential in overcoming these barriers (Kizildag et al., 2023). By embracing these strategies, equitable and effective support can be provided to families navigating the process of identifying and accessing disability services.
Conclusion and recommendations
In conclusion, this paper has tried to explore the intersectionality of cultural and linguistic diversity and disability, revealing a unique set of challenges faced by parents from a minority ethnic background who have a child with a disability. By examining the experiences of parents, this research highlights the pressing need to address cultural and linguistic factors in service provision. The findings consistently highlight a lack of knowledge about the specific nature of the needs of children with disabilities and their parents, resulting in communication challenges between families and experts. Moreover, cultural barriers hinder effective communication during the referral and diagnostic process. Immigrant families often face economic hardships, compounded by limited support from extended family networks influenced by cultural structures. It is essential to recognize and address these barriers comprehensively. Improving communication channels and providing comprehensive support can help bridge the gap between families and experts, ensuring that children with disabilities receive the specific and appropriate care they need. Additionally, psychological assistance should be made available to these families to help them cope with the unique challenges they face. Upon consideration of the unique insights provided by each study, common themes and issues emerge, underscoring the significance of cultural and linguistic factors, comprehensive support, and improved communication channels for serving families and children with disabilities.
Moving forward, it is recommended that researchers prioritize conducting systematic literature reviews and review background articles. This approach provides a comprehensive understanding of the topic, identifies knowledge gaps, and establishes a solid foundation for future research. Additionally, in order to address the challenges faced by minority ethnic groups with disabled children, researchers should focus on action research and intervention studies. By implementing and evaluating interventions, evidence-based solutions can be developed to support these families effectively. The findings of the articles reviewed in this paper have important policy implications, emphasizing the need for advocacy efforts to inform policymakers about the specific needs and experiences of minority groups with children with disabilities. This can lead to the development of inclusive policies and the allocation of resources to better support these families. Furthermore, while this paper contributes to the recognition of intersectionality in disability studies, it is focused on the experiences of parents who have a child with a disability and come from a minority ethnic background. Further studies may expand the literature on the lived experiences of minority ethnic people and children with disabilities. Lastly, future research should strive to include a more diverse range of ethnic backgrounds within minority groups to ensure a comprehensive understanding of the experiences and challenges faced by all minority groups with children with disabilities.
Author contributions
GK contributed to the conception of the study, reviewed the literature, and wrote the first draft of the manuscript. PC contributed to writing the discussion of the literature and improving the manuscript. All authors contributed to the manuscript revision, read, and approved the submitted version.
Funding
This study was funded by the Turkish Ministry of Education.
Conflict of interest
The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.
Publisher’s note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article, or claim that may be made by its manufacturer, is not guaranteed or endorsed by the publisher.
Footnotes
References
Aabe, N. O., Fox, F., Rai, D., and Redwood, S. (2019). Inside, outside and in-between: the process and impact of co-producing knowledge about autism in a UK Somali community. Health Expect. 22, 752–760. doi: 10.1111/hex.12939
Alsharaydeh, E. A., Alqudah, M., Lee, R. L. T., and Chan, S. W. C. (2019). Challenges, coping, and resilience among immigrant parents caring for a child with a disability: an integrative review. J. Nurs. Scholarsh. 51, 670–679. doi: 10.1111/jnu.12522
Andersone, R., and Helmane, I. (2018). Interdisiplinary education in multicultural environment. Rural Environ. Educ. Pers. 11, 25–32. doi: 10.22616/REEP.2018.002
Barnevik-Olsson, M., Gillberg, C., and Fernell, E. (2008). Prevalence of autism in children born to Somali parents living in Sweden: a brief report. Develop. Med. Child Neuro. 50, 598–601. doi: 10.1111/j.1469-8749.2008.03036.x
Bayat, M. (2007). Evidence of resilience in families of children with autism. J. Intellect. Disabil. Res. 51, 702–714. doi: 10.1111/j.1365-2788.2007.00960.x
Berghs, M., and Dyson, S. M. (2022). Intersectionality and employment in the United Kingdom: where are all the black disabled people? Disabil. Soc. 37, 543–566. doi: 10.1080/09687599.2020.1829556
Bölte, S. (2014). The power of words: is qualitative research as important as quantitative research in the study of autism? Autism 18, 67–68. doi: 10.1177/13623613135173
Bonell, S., Underwood, L., Radhakrishnan, V., and McCarthy, J. (2012). Experiences of mental health services by people with intellectual disabilities from different ethnic groups: a Delphi consultation. J. Intellect. Disabil. Res. 56, 902–909. doi: 10.1111/j.1365-2788.2011.01494.x
Building Great Britain Report. (2005). All Party Parliamentary Group for Conception to Age 2- The First 1001 days. Available at: https://parentinfantfoundation.org.uk/wp-content/uploads/2019/09/building-great-britons-report-conception-to-age-2-feb-2015.pdf (Accessed June 11, 2023).
Byerly, C., Sha, B., Grant, R., Daniels, G., Pevac, M., and Nielsen, C. (2023). The versatility of intersectionality in journalism and mass communication research. Journal. Mass Commun. Q. 100, 249–263. doi: 10.1177/10776990231166941
Bywaters, P., Ali, Z., Fazil, Q., Wallace, L. M., and Singh, G. (2003). Attitudes towards disability amongst Pakistani and Bangladeshi parents of disabled children in the UK: considerations for service providers and the disability movement. Health Soc. Care Community 11, 502–509. doi: 10.1046/j.1365-2524.2003.00456.x
Chen, D., Downing, J. E., and Peckham-Hardin, K. D. (2002). “Positive behavior support with families of diverse cultural and linguistic backgrounds: considerations for culturally-responsive practices” in Families in positive behavior support: Addressing problem behavior and family context. eds. J. M. Lucyshyn, G. Dunlap, and R. W. Albin (Baltimore, MD: Paul H. Brookes), 131–151.
Cheremshynski, C., Lucyshyn, J. M., and Olson, D. L. (2013). Implementation of a culturally appropriate positive behavior support plan with a Japanese mother of a child with autism: an experimental and qualitative analysis. J. Posit. Behav. Interv. 15, 242–253. doi: 10.1177/1098300712459904
Cole, E. (2009). Intersectionality and research in psychology. Am. Psychol. 64, 170–180. doi: 10.1037/a0014564
Crenshaw, K. (1991). Mapping the margins: intersectionality, identity politics, and violence against women of color. Stanford Law Rev. 43:1241. doi: 10.2307/1229039
Creswell, J. W. (2015). Educational research: Planning, conducting and evaluating quantitative and qualitative research. 5th Edn. London: Pearson.
Croot, E. J. (2012). The care needs of Pakistani families caring for disabled children: how relevant is cultural competence? Physiotherapy 98, 351–356. doi: 10.1016/j.physio.2011.05.001
Croot, E. J., Grant, G., Cooper, C. L., and Mathers, N. (2008). Perceptions of the causes of childhood disability among Pakistani families living in the UK. Health Soc. Care Community 16, 606–613. doi: 10.1111/j.1365-2524.2008.00784.x
Croot, E., Grant, G., Mathers, N., and Cooper, C. (2012). Coping strategies used by Pakistani parents living in the United Kingdom and caring for a severely disabled child. Disabil. Rehabil. 34, 1540–1549. doi: 10.3109/09638288.2011.650310
Department for Children, Schools and Families (DCSF) (2009) Breaking the link between disadvantage and low attainment. Everyone’s business. London. DCSF.
Department of Education and Department of Health. (2015). Special educational needs and disability code of practice: 0 to 25 years. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf
Department of Health (2001). Valuing people: A new strategy for learning disability for the 21st century. Available at: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/250877/5086.pdf (Accessed June 11, 2023).
Devapriam, J., Thorp, C., Tyrer, F., Gangadharan, S., Raju, L., and Bhaumik, S. (2008). A comparative study of stress and unmet needs in carers of south Asian and white adults with learning disabilities. Int. J. Human Rights Healthcare 1, 35–43. doi: 10.1108/17570980200800019
Dinora, P., and Bogenschutz, M. (2018). Narratives on the factors that influence family decision making for young children with autism spectrum disorder. J. Early Childhood 40, 195–211. doi: 10.1177/1053815118760313
Done, E. J., Knowler, H., Warnes, E., and Pickett-Jones, B. (2021). Think piece on parents, ‘off rolling’and wavelength methodology: issues for SENCos. Support Learn. 36, 69–82. doi: 10.1111/1467-9604.12339
Durà-Vilà, G., and Hodes, M. (2009). Ethnic variation in service utilisation among children with intellectual disability. J. Intellect. Disabil. Res. 53, 939–948. doi: 10.1111/j.1365-2788.2009.01214.x
Durling, E., Chinn, D., and Scior, K. (2018). Family and community in the lives of UK Bangladeshi parents with intellectual disabilities. J. Appl. Res. Intellect. Disabil. 31, 1133–1143. doi: 10.1111/jar.12473
Earley, C. P. (2006). Leading cultural research in the future: a matter of paradigms and taste. J. Int. Bus. Stud. 37, 922–931. doi: 10.1057/palgrave.jibs.8400236
Ennis-Cole, D., Durodoye, B. A., and Harris, H. L. (2013). The impact of culture on autism diagnosis and treatment: considerations for councelors and other professionals. Family J. 21, 279–287. doi: 10.1177/1066480713476834
Equality Act. (2010). EqA. Available at: https://www.legislation.gov.uk/ukpga/2010/15/part/2/chapter/2/crossheading/discrimination
Ergur, A. (2017). “Kültür” in Sosyal bilimlerde temel kavramlar. ed. E. Gökalp (Eskişehir: Anadolu Üniversitesi Yayınları), 105–124.
Essex County Council. (2011). Supporting Thai, Turkish & Turkish Cypriot pupils at key stages 1 to 4. https://schools.essex.gov.uk/pupils/EMTAS%20Ethnic%20Minority%20and%20Traveller%20Achievement%20Service/EAL/Documents/Findings%20from%20the%20Thai%20and%20Turkish%20Project.pdf
Explore Education Statistics. (2023). Academic year 2022/23: schools, pupils and their characteristics. Available at: https://explore-education-statistics.service.gov.uk/find-statistics/school-pupils-and-their-characteristics
Fazil, Q., Bywaters, P., Ali, Z., Wallace, L., and Singh, G. (2002). Disadvantage and discrimination compounded: the experience of Pakistani and Bangladeshi parents of disabled children in the UK. Disabil. Soc. 17, 237–253. doi: 10.1080/09687590220139838
Fellin, M., King, G., Esses, V., Lindsay, S., and Klassen, A. (2013). Barriers and facilitators to health and social service access and utilization for immigrant parents raising a child with a physical disability. Int. J. Migrat. Health Social Care 9, 135–145. doi: 10.1108/IJMHSC-07-2013-0024
Ferree, M. M. (2018). Intersectionality as theory and practice. Contemp. Sociol. 47, 127–132. doi: 10.1177/0094306118755390
Fox, F., Aabe, N., Turner, K., Redwood, S., and Rai, D. (2017). “It was like walking without knowing where I was going”: a qualitative study of autism in a UK Somali migrant community. J. Autism Dev. Disord. 47, 305–315. doi: 10.1007/s10803-016-2952-9
Gay, L. R., Mills, G. E., and Airasian, P. W. (2009). Educational research: Competencies for analysis and applications. New York: Merrill.
Gencer, T. E. (2017). An evaluation of the relationship of immigration and education: education needs of the Syrian refugee children and challenges of exposed delays in schooling processes. J. Int. Soc. Res. 10, 838–851. doi: 10.17719/jisr.20175434652
Gilligan, P. (2013). The challenge of cultural explanations and religious requirements for children with autistic spectrum conditions: south Asian Muslim parents in Bradford, England. J. Religion Disabil. Health 17, 393–408. doi: 10.1080/15228967.2013.841365
Goodley, D., and Runswick-Cole, K. (2010). Len Barton, inclusion and critical disability studies: Theorising disabled childhoods. Int. Stud. Sociol. Educ. 20, 273–290. doi: 10.1080/09620214.2010.530851
Habayeb, S., Dababnah, S., John, A., and Rich, B. (2020). Cultural experiences of Arab American caregivers raising children with autism spectrum disorder. J. Autism Dev. Disord. 50, 51–62. doi: 10.1007/s10803-019-04218-3
Hanson, M., and Espinosa, L. (2016). “Culture, ethnicity, and linguistic diversity: implications for early childhood special education” in Handbook of early childhood special education. eds. B. Reichow, B. A. Boyd, E. E. Barton, and S. L. Odom (New York: Springer International Publishing), 455–472.
Harris, J., and Bamford, C. (2001). The uphill struggle: services for deaf and hard of hearing people- issues of equality, participation and access. Disabil. Soc. 16, 969–979. doi: 10.1080/09687590120097854
Hatton, C., Akram, Y., Robertson, J., Shah, R., and Emerson, E. (2003). The disclosure process and its impact on south Asian families with a child with severe intellectual disabilities. J. Appl. Res. Intellect. Disabil. 16, 177–188. doi: 10.1046/j.1468-3148.2003.00167.x
Hatton, C., Emerson, E., Kirby, S., Kotwal, H., Baines, S., Hutchinson, C., et al. (2010). Majority and minority ethnic family carers of adults with intellectual disabilities: perceptions of challenging behaviour and family impact. J. Appl. Res. Intellect. Disabil. 23, 63–74. doi: 10.1111/j.1468-3148.2009.00544.x
Heer, K., Larkin, M., Burchess, I., and Rose, J. (2012). The cultural context of care- giving: qualitative accounts from south Asian parents who care for a child with intellectual disabilities in the UK. Adv. Ment. Health Intellect. Disabil. 6, 179–191. doi: 10.1108/20441281211236580
Heer, K., Larkin, M., and Rose, J. (2015). The experiences of British south Asian carers caring for a child with developmental disabilities in the UK. Tizard Learn. Disabil. Rev. 20, 228–238. doi: 10.1108/TLDR-12-2014-0044
Heer, K., Rose, J., and Larkin, M. (2014). The challenges of providing culturally competent care within a disability focused team: a phenomenological exploration of staff experiences. J. Transcult. Nurs. 27, 109–116. doi: 10.1177/1043659614526454
Hoover, J. J., Baca, L. M., and Klingner, J. K. (2016). Why do English learners struggle with reading? Distinguishing language acquisition from learning disabilities. Thousand Oaks: Corwin Press.
House of Commons Health and Social Care Committee (2019). First 1000 days of life: thirteenth report of session 2017-19. Available at: https://publications.parliament.uk/pa/cm201719/cmselect/cmhealth/1496/1496.pdf (Accessed June 11, 2023).
Hubert, J. (2006). Family carers’ views of services for people with learning disabilities from black and minority ethnic groups: a qualitative study of 30 families in a South London borough. Disabil. Soc. 21, 259–272. doi: 10.1080/09687590600617451
Hussein, A. M., Pellicano, E., and Crane, L. (2019). Understanding and awareness of autism among Somali parents living in the United Kingdom. Autism 23, 1408–1418. doi: 10.1177/1362361318813996
Janicijevic, N., Nikcevic, G., and Vasic, V. (2018). The influence of organizational culture on job satisfaction. Econ. Ann. 63, 83–114. doi: 10.2298/eka1819083j
Jegatheesan, B., Miller, P. J., and Fowler, S. A. (2010). Autism from a religious perspective: a study of parental beliefs in south Asian Muslim immigrant families. Focus Autism Other Dev. Disabil. 25, 98–109. doi: 10.1177/1088357610361344
Khanlou, N., Haque, N., Mustafa, N., Vazquez, L. M., Mantini, A., and Weiss, J. (2017). Access barriers to services by immigrant mothers of children with autism in Canada. Int. J. Ment. Heal. Addict. 15, 239–259. doi: 10.1007/s11469-017-9732-4
Khanlou, N., Haque, N., Sheehan, S., and Jones, G. (2014). “It is an issue of not knowing where to go”: service providers’ perspectives on challenges in accessing social support and services by immigrant mothers of children with disabilities. J. Immigr. Minor. Health 17, 1840–1847. doi: 10.1007/s10903-014-0122-8
King, J., Edwards, N., Correa-Velez, I., Hair, S., and Fordyce, M. (2016). Disadvantage and disability: Experiences of people from refugee backgrounds with disability living in Australia. Dis. Global South, 3, 843–84.
King, G. A., Esses, V. M., and Solomon, N. (2013). “Immigrant and refugee families raising children with disabling conditions: a review of the international literature on service access, service utilization, and service care experiences” in U.S. immigration and education: Cultural and policy issues across the lifespan. ed. E. L. Grigorenko (New York: Springer Publishing), 179–206.
King, J. A., and King, M. J. (2011). The lived experience of families living with spinal cord disability in Northeast Thailand. Third World Q. 32, 1475–1491. doi: 10.1080/01436597.2011.614801
Kizildag, D., Eilenberg, J. S., Blakey, A., Cardona, N., Feinberg, E., Broger-Fingert, S., et al. (2023). Family experiences with the autism developmental evaluation process: perspectives of immigrant and US-born mothers. J. Child Fam. Stud. 32, 926–937. doi: 10.1007/s10826-022-02428-5
Liasidou, A. (2012). Inclusive education and critical pedagogy at the intersections of disability, race, gender and class. J. Crit. Educ. Policy Stud. 10, 168–184.
Lindsay, S., Proulx, M., Scott, H., and Thomson, N. (2014). Exploring teachers’ strategies for including children with autism spectrum disorder in mainstream classrooms. Int. J. Incl. Educ. 18, 101–122. doi: 10.1080/13603116.2012.758320
Liu, Y., and Fisher, K. R. (2017). Engaging with disability services: experiences of families from Chinese backgrounds in Sydney. Aust. Soc. Work. 70, 441–452. doi: 10.1080/0312407X.2017.1324885
Lopez, M. L., Tarullo, L. B., Forness, S. R., and Boyce, C. A. (2000). Early identification and intervention: head start’s response to mental health challenges. Early Educ. Dev. 11, 265–282. doi: 10.1207/s15566935eed1103_3
Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., et al. (2009). Racial/ethnic disparities in the identification of children with autism spectrum disorders. Am. J. Public Health 99, 493–498. doi: 10.2105/AJPH.2007.131243
Merriam, S. B., and Tisdell, E. J. (2016). Qualitative research: a guide to design and implementation. Hoboken, NJ: Jossey-Bass.
Miller-Gairy, S., and Saul Mofya, D. V. M. (2015). Elements of culture and tradition that shape the perceptions and expectations of Somali refugee mothers about autism spectrum disorder. Int. J. Child Adolesc. Health 8, 425–438.
Munroe, K., Hammond, L., and Cole, S. (2016). The experiences of African immigrant mothers living in the United Kingdom with a child diagnosed with an autism spectrum disorder: an interpretive phenomenological analysis. Disabil. Soc. 31, 798–819. doi: 10.1080/09687599.2016.1200015
Neely-Barnes, S. L., and Dia, D. A. (2008). Families of children with disabilities: a review of literature and recommendations for interventions. J. Early Inten. Behav. Intervent. 5, 93–107. doi: 10.1037/h0100425
Office for National Statistics (2021). Census 2021 results. Available at: https://census.gov.uk/census-2021-results
Oliver, C., and Singal, N. (2017). Migration, disability and education: reflections from a special school in the east of England. Br. J. Sociol. Educ. 38, 1217–1229. doi: 10.1080/01425692.2016.1273757
Ortiz, A. A., Robertson, P. M., Wilkinson, C. Y., Liu, Y., McGhee, B. D., and Kushner, M. I. (2011). The role of bilingual education teachers in preventing inappropriate referrals of ELLs to special education: implications for response to intervention. Biling. Res. J. 34, 316–333. doi: 10.1080/15235882.2011.628608
Portera, A. (2020). Has multiculturalism failed? Let's start the era of interculturalism for facing diversity issues. Intercult. Educ. 31, 390–406. doi: 10.1080/14675986.2020.1765285
Race Relations (Amendment) Act. (2000). (c.34) UK Public General Acts. Available at: http://www.legislation.gov.uk/ukpga/2000/34/contents
Randall, A. K., and Curran, M. A. (2023). Editorial synthesis for 2 in 2023 a collaboration between IARR’s two journals: Recognising the need for greater inclusivity in relationship science. Per. Relation. 30, 4–18. doi: 10.1111/pere.12477
Raghavan, R., and Waseem, F. (2007). Services for young people with learning disabilities and mental health needs from south Asian communities. Adv. Ment. Health Learn. Disabil. 1, 27–31. doi: 10.1108/17530180200700028
Ravindran, N., and Myers, B. J. (2012). Cultural influences on perceptions of health, illness, and disability: a review and focus on autism. J. Child Fam. Stud. 21, 311–319. doi: 10.1007/s10826-011-9477-9
Rizvi, S. (2017). Exploring British Pakistani mothers’ perception of their child with disability: insights from a UK context. J. Res. Spec. Educ. Needs 17, 87–97. doi: 10.1111/1471-3802.12111
Rizvi, S. (2018). There’s never going to be a perfect school that ticks every box: minority perspectives of inclusion and placement preferences. J. Res. Spec. Educ. Needs 18, 59–69. doi: 10.1111/1471-3802.12418
Rogers-Adkinson, D. L., Ochoa, T. A., and Delgado, B. (2003). Developing cross-cultural competence: serving families of children with significant developmental needs. Focus Autism Other Dev. Disabil. 18, 4–8. doi: 10.1177/10883576030180010
Sakai, C., Mulé, C., LeClair, A., Chang, F., Sliwinski, S., Yau, Y., et al. (2019). Parent and provider perspectives on the diagnosis and management of autism in a Chinese immigrant population. J. Dev. Behav. Pediatric 40, 257–265. doi: 10.1097/DBP.0000000000000660
Sandhu, P., Ibrahim, J., and Chinn, D. (2016). “I wanted to come here because of my child”: stories of migration told by Turkish-speaking families who have a son or daughter with intellectual disabilities. J. Appl. Res. Intellect. Disabil. 30, 371–382. doi: 10.1111/jar.12248
Selman, L. E., Fox, F., Aabe, N., Turner, K., Rai, D., and Redwood, S. (2018). ‘You are labelled by your children’s disability’–a community-based, participatory study of stigma among Somali parents of children with autism living in the United Kingdom. Ethn. Health 23, 781–796. doi: 10.1080/13557858.2017.1294663
Sicherman, N., Loewenstein, G., Tavassoli, T., and Buxbaum, J. D. (2018). Grandma knows best: family structure and age of diagnosis of autism spectrum disorder. Autism 22, 368–376. doi: 10.1177/1362361316679632
Stahl, G. K., Maznevski, M. L., Voigt, A., and Jonsen, K. (2010). Unraveling the effects of cultural diversity in teams: a meta-analysis of research on multicultural work groups. J. Int. Bus. Stud. 41, 690–709. doi: 10.1057/jibs.2009.85
Strand, S., and Lindsay, G. (2009). Evidence of ethnic disproportionality in special education in an English population. J. Spec. Educ. 43, 174–190. doi: 10.1177/0022466908320461
Su, Y. R. (2007). Parenting in a foreign land: The lived experience of Taiwanese immigrants with disabled children in the United States. Los Angeles, CA: The University of Southern California.
Taylor, S. J., Bogdan, R., and DeVault, M. (2016). Introduction to qualitative research methods: A guidebook and resource. Hoboken, NJ: Wiley.
Thomas, K. (2020). Intersectionality and epistemic erasure: a caution to decolonial feminism. Hypatia 35, 509–523. doi: 10.1017/hyp.2020.22
Torres, C. A., and Tarozzi, M. (2019). Multiculturalism in the world system: towards a social justice model of inter/multicultural education. Glob. Soc. Educ. 18, 7–18. doi: 10.1080/14767724.2019.1690729
Waitoller, F. R., and Artiles, A. J. (2013). A decade of professional development research for inclusive education: a critical review and notes for a research program. Rev. Educ. Res. 83, 319–356. doi: 10.3102/00346543134839
Walton, E. (2023). Disability studies in education and intersectionality. Int. Encycl. Educ. 9, 249–258. doi: 10.1016/B978-0-12-818630-5.12013-5
Woods, D., and Brink, M. (2021). What is intersectional equality? A definition and goal of equality for organizations. Gender Work Organ. 29, 92–109. doi: 10.1111/gwao.12760
Wright, A. (2023). Telling the tale: black women politicians and their use of experiential rhetoric. Polit. Gend. 1-28, 1–28. doi: 10.1017/s1743923x23000077
Yang, B., Zhao, D., and Liu, L. (2021). An analysis of Hall’s theory of cultural identity and its application in flipped class. Proceedings of the 2nd international conference on language, communication and culture studies, advances in social science, education and humanities research, 588, 177–184.
Keywords: intersectionality, disability, cultural diversity, linguistic diversity, literature review, minority ethnic background
Citation: Kaplan G and Celik P (2023) Intersectionality of disability and cultural/linguistic diversity in the UK: a literature review. Front. Educ. 8:1239777. doi: 10.3389/feduc.2023.1239777
Edited by:
Anabel Corral-Granados, NTNU, NorwayReviewed by:
David Hernandez-Saca, University of Northern Iowa, United StatesMillicent Musyoka, Lamar University, United States
Copyright © 2023 Kaplan and Celik. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
*Correspondence: Gamze Kaplan, gamze.kaplan@manchester.ac.uk