Listening to Adolescents and Adults with Intellectual Disabilities from South Asian Communities

Abstract

Twenty‐one South Asian adolescents and adults with intellectual disabilities were interviewed regarding eight areas of their lives: accommodation, individual support, day services, service support, social and recreational activities, friendships and relationships, ethnic and racial identity, and racism and stigma. All interviews were coded for user satisfaction with these aspects of their lives, and content‐analysed to draw out relevant themes. From the interviews, it is clear that South Asian adolescents and adults have a strong and positive sense of their ethnic and racial identity, and that they are generally satisfied with their home and family circumstances. However, people with intellectual disabilities from South Asian communities experience pervasive racism and stigma throughout all areas of their lives. Consequences of this double discrimination include a lack of culturally appropriate services, limited friendships and closer relationships, and a lack of meaningful leisure activities. Implications of these findings for services are discussed.

The complex role of social care services in supporting the development of sustainable identities: Insights from the experiences of British South Asian women with intellectual disabilities

“…The results from our study can also be compared with those reported by Azmi et al (1997). The Azmi et al study described the experiences of participants who claimed a strong ethnic identity, and were dissatisfied with services.…”

“…Very few studies which have focused upon minority ethnic groups have done so by collecting data from adults with intellectual disabilities themselves (Azmi et al, 1997;Bonnell et al, 2012;Pestana, 2011;Raghavan & Waseem, 2007). In these studies, participants with intellectual disabilities reported social isolation, limited social networks, lack of leisure and recreational activities, unmet cultural needs and experiences of 'double discrimination' (in relation to disability and ethnicity), racism and stigma (Azmi et al, 1997;Pestana, 2011). However, these participants were broadly satisfied with the limited range of services received (for example, day services; Azmi et al, 1997) and mental health services (Bonell et al, 2012).…”

Learning disabilities and ethnicity: achieving cultural competence

“…Azmi et al (1997) found this double discrimination to be a painful reality. However, in their study of such a population, all participants had a strong sense of their ethnic and racial identities and viewed these identities positively.…”

Getting the picture: Photo‐assisted conversations as interviews

“…Though people with intellectual disabilities are reported to be both willing and able to tell about their lives and activities, many authors still report of problems inherent in interviewing such informants (e.g. Azmi, Hatton, Emerson, & Caine, 1997;Biklen & Moseley, 1988;Carnaby, 1997;Flynn, 1986;Jahoda, Markova, & Cattermole, 1988;McVilly, 1995;Sigelman et al, 1981;Tøssebro, 1990;Tøssebro, 1992;Wyngaarden, 1981).…”

“…So, acquiescence could be seen as "a general tendency to avoid responses that might be interpreted as negative, resistive, or rebellious" (Matikka & Vesala, 1997 :76) Any and all of these things may influence the way the interview therefore is handled, and thus, interfere with the intentions of the interview. In the end, we are advised to encourage informants to use their own words (Azmi et al, 1997;Flynn, 1986;Wyngaarden, 1981), and that "a largely informal, unstructured approach [is] likely to be the most productive" (Simons et al, 1989:14).…”