Paradigms lost: The changing face of disability in research

Concepts of disability have evolved over the past few decades. The focus of attention has shifted from disability as a state, a consequence of disease, to disability being included as just one of many components of health. This has been realised in part through the implementation of the International Classification of Functioning, Disability and Health (ICF). Despite these developments and increased focus in recent years, reliable disability data, particularly from low-income countries, are lacking.We present an innovative approach to measuring disability in a population that is based on some conceptual elements of the ICF, namely activity limitations and participation restrictions. The results are derived from studies on the living conditions among people with disabilities in Namibia, Zimbabwe and Malawi conducted between 2001 and 2004. From the data analysis perspective, the research challenge lies in a shift in the dependent variable from a dichotomous outcome measure (disability as a state: disabled, not disabled) to a continuous measure of activity limitations and participation restrictions – mirroring the range of disability we see in society.These measures of activity limitations and participation restrictions must however not be interpreted in isolation, but as integral to the environment, society and culture from which they are derived. This will require an expanded view of disability data and effect substantially greater measurement challenges.