How representative are organisations of persons with disabilities? Data from nine population-based surveys in low- and middle-income countries

Organisations of Persons with Disabilities (OPDs) are critical to promoting and protecting the rights of people with disabilities. However, little is known about the extent to which people with disabilities are aware and members of OPDs. This study uses data from nine population-based surveys in low- and middle-income countries to explore OPD awareness and membership. Across settings, about a third of people with disabilities were aware of OPDs and fewer than 15% were members. Awareness and membership were lower amongst older adults, women, people with difficulties communicating, remembering and with self-care, people with less education, in poverty and in rural areas. Underrepresentation of certain groups may indicate a need to seek out the voices of people less likely to be associated with OPDs. Further, low total membership may be a cause for concern in settings where OPDs are relied upon to deliver essential services in the absence of state structures.