12 - Intellectual disability and ethnicity: achieving cultural competence

Summary

Summary Despite the higher prevalence of intellectual disability among some minority ethnic communities and the greater burden of care, families from these communities with a member who has intellectual disability are doubly disadvantaged as a result of racial discrimination and culturally inappropriate forms of care and service provision. This chapter looks at the issue of discrimination, as well as the generally negative attitudes towards people with intellectual disability, and synthesises these into the concept of ‘double jeopardy’. It concludes by proposing ways of developing cultural competence in the delivery of care to this population.

Enormous cultural complexity is found in modern-day families. Spouses may belong to different racial, religious or ethnic groups, and two or more cultures may be represented among the parents and children (Falicov, 1995). Relying on potentially stereotyped and ethnically focused information can be very misleading. Individuals vary considerably in the extent to which they choose to observe religious or cultural customs and conventions; the degree of acculturation may also vary between generations and between men and women. However, there is no doubt that the stigma of intellectual disability (other terms include mental retardation and learning disability) can be shattering and it transcends race, beliefs and culture. It creates profound emotional, practical and psychological experiences for all parents (Shah, 1992).

The ‘minority experience’

Ethnicity is a complex concept which includes religious and cultural background, shared histories and common descent. Ultimately, it is the individual's psychological sense of belonging. Although not unique to families from ethnic minorities, there are distinguishing life events that differentiate the ‘minority experience’ from that of White middle-class families (Sue & Sue, 1999; Box 12.1).

Box 12.1 The minority experience

Ethnic minority reality – often racism and poverty dominate lives.

Conflicting value systems – almost all minority ethnic groups place greater value on families, historical lineage and the submergence of self for the good of the family.

Biculturalism – many families inherit two cultural traditions. It is important to understand how biculturalism influences family structure, communication and dynamics. There is a need to understand the acculturation process.

Minority status – memories of colonialism, imperialism, slavery and the Holocaust, refugee and immigration status, skin colour and obvious physical differences are important factors that may determine the treatment of individuals and their families.