Disadvantage and Discrimination Compounded: The experience of Pakistani and Bangladeshi parents of disabled children in the UK

Abstract

This paper discusses a qualitative and quantitative study of the circumstances of 20 Pakistani and Bangladeshi families with one or more severely disabled children living in Birmingham, England. Parents and other adult carers were interviewed using a combination of structured questionnaires and a semi-structured interview schedule focusing on the families' material circumstances, their use of formal services, informal care arrangements, and aspects of the parents' social and psychological well-being. The study suggests that previous national surveys of disabled families may have under-estimated the extent of material disadvantage, while it confirms that health and social care professionals should not assume that Pakistani and Bangladeshi parents have recourse to high levels of extended family support. The combination of disadvantaged circumstances and difficulties in securing access to appropriate services, which are found for the majority of families with a disabled child, was particularly acute for these ethnic minority families, suggesting the additional dimension of institutional racism.