Paper short abstract:

This paper discusses several families whose children have genetic disorders. It discusses two terms, daktari (biomedical) and upri (spirit-related), which British Bangladeshis use to understand health problems and explains how these influence the families’ approaches to helping their children.

Paper long abstract:

This paper derives from an ESRC-funded research project in which I am doing ethnographic research with a number of British Bangladeshi families who have children with genetic disorders or who have been told that they are themselves carriers for genetic disorders. The families are in Birmingham and Cardiff. In this paper I look at how families who are coping with one or more children with genetic disorders understand their children's problems and what kinds of assistance they see as appropriate for their children. The children have been diagnosed as having a variety of different disorders, including XP (xeroderma pigmentosum), Angelman's Syndrome, TS (tuberous sclerosis), Cockayne's syndrome, carnitine deficiency, thalassemia and Bardet-Biedl Syndrome.

Two commonly used categories are daktari and upri. Daktari comes from the word for "doctor" and implies problems that can be dealt with in biomedical terms. Upri and najar refer, more or less, to problems that cannot be understood and cured by biomedicine. These imply the activity of spirits (jinn, etc) or other 'supernatural' agencies and can be countered, if at all, by specialists who know how to deal with these problems and who use methods deriving from Islam or from Bangladeshi folk practices. These specialists may be imams (Muslim clerics) but may also be lay people. Other remedies may include use of empowered water and empowered oil, or taking the child to visit a Sufi shrine in Bangladesh or India. Some families also take their children on a pilgrimage to Kabah (in Mecca) known as umrah.

In practice, however, there is no sharp dividing line between daktari and upri problems, and families will use a combination of ways of understanding and attempting to remedy their children's condition.