Empowerment and advocacy: reflections on action research with Bangladeshi and Pakistani families who have children with severe disabilities.

The concepts of empowerment and advocacy, and how they impinge on power relationships for service providers working with black and Asian communities, are explored through the findings of a 20-month project carried out between 2000 and 2001 with 19 Pakistani and Bangladeshi families who have children with severe disabilities in Birmingham. This action research project evaluated an advocacy project designed to improve the quality of life for Pakistani and Bangladeshi families with at least one child with severe disabilities. The objectives included improving access to resources, services, information and support in ways which were non-stigmatising, and which were sensitive to the particular needs of the children and their carers. The present paper discusses four main themes: (1) advocacy and empowerment in practice; (2) issues of the efficacy of advocacy and of consultation within advocacy; (3) individual empowerment versus the families' needs; and (4) cultural and gender issues which emerged from the analysis of the study. The authors identify features of empowerment which must be addressed in advocacy services which are sensitive to ethnic differences. These issues must be addressed if services are to reap their potential to make a positive impact on the lives of the most vulnerable and powerless members of the community.

Attitudes towards disability amongst Pakistani and Bangladeshi parents of disabled children in the UK: considerations for service providers and the disability movement.

It has sometimes been assumed that religiously based explanations for and attitudes to having a disabled child have led to the low uptake of health and social services by ethnic minority families in the UK. A series of semi-structured interviews were held between 1999 and 2001 with 19 Pakistani and Bangladeshi families with a disabled child as part of an evaluation of an advocacy service. The families' understandings of the causes of their child's impairment, whether they felt shame and experienced stigma, and whether these factors influenced service uptake and their expectations of their child's future are reported. While religious beliefs did inform the ways in which some families conceptualised their experience, the families' attitudes were complex and varied. There was little evidence that religious beliefs and associated attitudes rather than institutional racism had resulted in the low levels of service provision which the families experienced prior to the advocacy service. There was also no evidence that the families' attitudes had been informed by the disability movement. The implications for service providers and the movement are considered.