Concepts of and attitudes towards disability in the Pakistani community in the UK
Debbie Kramer-Roy, Brunel University
Abstract
The findings presented in this paper form one of the outcomes of a participatory action research study carried out with a group or Pakistani families with disabled children. The purpose of the study was to explore how I might be able to facilitate the participants to take an active role in identifying the nature and extent of their support needs and in ensuring that these needs will be met more satisfactorily. Three groups of men, women and children respectively engaged in their own action research cycles.
My personal experience of living and working with disabled children and their families, schools and communities in Pakistan for 9 years greatly influenced the nature and depth of the relationship of trust I developed with the participants. Recurrent themes in the study were around 'disability and Islam (the religion of all participating families)' and 'negative community attitudes towards disability'. There was a clear contrast between attitudes towards disability within the immediate family and those in the wider community, though both were expressed in religious terms. The men's action research group went about finding out what the Quran and Hadith (teachings of the Prophet) teach about the reasons for disability and the attitude towards disabled persons required of Muslims, so that they would be better equipped to challenge the negative attitudes encountered. They found the Quran does not provide any basis for community attitudes that imply that disability is a punishment for sin. Mothers in particular attributed positive meaning to the Quranic concept of God 'testing' Muslims in order to strengthen their faith and character, and tended to consider their disabled child to be a blessing. Cultural aspects of family life, such as a strong emphasis on interdependence and loyalty, had both positive and limiting effects on the way family members managed the care of the disabled child.
The paper further considers how the perceptions and attitudes described relate to the commonly recognised traditional, medical and social models of disability.
This study not only facilitated the participants to influence community attitudes towards disability, but also demonstrates the importance of a deeper understanding by service providers of families' cultural and religious concepts of disability in order to be able to build on the positive aspects of these in the support provided.
This PhD research study is supervised by professors Peter Beresford and Judith Harwin at Brunel University, West London (estimated completion date: April/May 2009).