Social, Cultural and Environmental Contexts and the Measurement of the Burden of Disease
In this science and policy, the Disability Adjusted Life Year (DALY) offered a promising means to compute the cost of morbidity, to quantify pain, loss of function, impairment or handicap in order to summarise the impact on individuals of disease, accident, birth impediment or other change in function. The computation promised a means to compare internationally, as a result of which agencies and institutions – including government and Bretton Woods financing institutions such as the World Bank - might then adjust policies, flows of funds and the direction of other resources. The authors of this study (Reidpath, Allotey, Kouamé and Cummins) illustrate, however, that all is not equal, neither at the level of individual, community nor country. Social, economic and political circumstances, class, age and gender, family structure, support networks and community capacity – including what we refer to now as social capital – all influence personal response to illness, physical management and care, and psychological adjustment. They influence the ways in which family members too are able to accommodate disability, to share the costs of care, contribute to labour, meet the needs for medication and/or aids, and make up for loss of productivity when one householder’s contributions are reduced. While the DALY purportedly took on board such differences, and allowed for cross-country and cross-cultural comparison, this monograph – a study of paraplegia and epilepsy in Cameroon and Australia – makes clear how difficult it is to generalise, and how heavily context bears upon experience. The study is a provocative one. It highlights the subjective nature of disability, and the real differences that place, class and gender make. A young poor woman in rural Cameroon, crawling through mud to reach a latrine, has a very different experience of disability and its embodiment than does a woman of the same age in urban Australia, with a contemporary lightweight wheelchair and adjusted toilet facilities. The former relies on her family to feed her; in the absence of family, or her ability to beg. The latter lives in a society with a safety net for her security – the right to community care and case workers, assistance with aids, and minimal financial support to ensure she is not left to die. This monograph highlights the importance of studying different contexts and meanings of wellbeing, illness and disablement. There is a clear need for further thought to be given methodologically to and in terms of gathering the empirical evidence of disability. There is a wide variety of study techniques and approaches available to do this. Reidpath, Allotey, Kouamé and Cummins’ study highlights the value of combining qualitative and quantitative methods with the perspectives and insights of a variety of disciplines (in this case, anthropology, epidemiology and psychology) to document the variety of experiences of disability and illness. As health researchers, policy makers and the architects of programs, our ability to respond to illness, disease and dysfunction depends on the quality of the evidence-base. As this monograph illustrates, that base needs to be sensitive to context and to the complications that follow from life circumstances, opportunity and chance. ........"