Review

Fair treatment please

Ethnicity, Disability and Chronic Illness
Waqar I U Ahmad (ed)
Open University Press, £18.99

This series of essays is essentially descriptive and anecdotal but will give those unfamiliar with conditions in Britain’s black and Asian communities some illuminating insights into the experience and perceptions of disabled people and their parents.

The book suffers from a lack of rigour, particularly in its treatment of ethnicity. Most of the work has been done among Bengali, Indian and Pakistani communities, with rather less attention paid to those of African descent. There is no mention of the experience of less visible ethnic groups, such as Jews or Irish people, nor more recent arrivals from Somalia and former Yugoslavia. There is also very little consideration of the different characteristics and experiences of these communities.

The book fails to consider factors such as people’s level of education and wealth, or the length of time they have been in this country, and it makes no attempt to draw any real comparison between the experience of black people and those of the white majority.

White parents of disabled children also have experience of poor communication with professionals, prejudice, lack of information and most of the other complaints raised in these essays. Lumping together people in this way undervalues the cultural differences between different groups and encourages the perception that all black people are the same. If we are to make real progress in this area we need more information as to how different ethnic groups are treated.

Ahmad clearly has some problems with the social model of disability. It does not fit the disabilities under consideration in the book very well: hearing loss, learning difficulties, sickle cell disease and thalassaemia are problems which are not susceptible to environmental adaptations from the non-disabled majority.

In black communities, the demand to be taken seriously as citizens extends to the whole community. The culture of the deaf community is to treat itself as a linguistic and cultural minority, which is in conflict with the identity desired by the families of black disabled people. Interestingly there appears to be no alternative to British Sign Language, in this country at any rate, although the book reports moves to replace some signs which are felt to be derogatory.

One of the most interesting areas Ahmad explores is that of family guilt for genetically originated conditions. Doctors clearly blame Asian families for producing a higher proportion of disabled children because of the tradition of marrying cousins.

Some of this blame is without any scientific foundation and certainly leads to resentment and distrust from those at the receiving end. As understanding of the genetic basis of other conditions grows, professionals may want to reflect on the experience of families with genetic conditions before they start lecturing people on the importance of choosing partners on a genetic basis.

Despite its drawbacks, the book is a thought provoking and readable account of the experience of some of the black disabled people in this country. The way many black people experience the NHS is humiliating and the only way this seems likely to change is if sufficient people from their own communities are employed in positions of authority.