The Definition Dilemma: How Definitions of Disability Shape Statistics on Social Participation

To monitor progress in including persons with disabilities, including in interventions which can improve their health and quality of life, it is crucial to collect data on their participation. However, there are many different ways of defining disability and thus categorising individuals as disabled/not disabled, which may impact measures of participation. This study aims to assess the relationship between three different measures of disability and the level of participation of persons with disabilities. We analysed data from a population-based survey of disability amongst Syrian refugees in Istanbul, which collected data on disability using the Washington Group enhanced set of disability questions as well a two-question set asking about perceived activity limitations due to disability. The prevalence of disability ranged from 13.5 to 22.4% depending on the measure used. The group of people that are categorised as disabled also differs, indicating who is being seen as disabled changes when a different measure is used. Levels of participation, with regards to paid work, education and being partnered, also varied by measure, for example, being in paid work ranged from 26% to 38%. These findings underscore the importance of carefully selecting and clearly defining disability measures in studies, (health) interventions and policy contexts.