The many faces of disability in evidence for policy and practice: embracing complexity

Abstract

Background: This special issue examines the relationship between disability, evidence, and policy. Key points: Several themes cut across the included papers. Despite the development of models of disability that recognise its socially constructed nature, dis/ableism impedes the involvement of people with disability in evidence production and use. The resultant incomplete representations of disability are biased towards its deproblematisation. Existing data often homogenise the heterogeneous. Functioning and impairment categories are used for surveys, research recruitment and policy enactments, that exclude many. Existing data may crudely evidence some systematic inequalities, but the successful and appropriate development and enactment of disability policies requires more contextual data. Categories and labels drawn from a deficit model affect social constructions of identity, and have been used socially and politically to justify the disenfranchisement of people with disability. Well rehearsed within welfare systems, this results in disempowered and devalued objects of policy, and, as described in one Brazilian paper, the systematic breakup of indigenous families. Several studies show the dangers of policy developed without evidence and impact assessments from and with the intended beneficiaries. Conclusions and implications: There is a need to mitigate barriers to inclusive participation, to enable people with disability to collaborate as equals with other policy actors. The combined application of different policy models and ontologies, currently in tension, might better harness their respective strengths and encourage greater transparency and deliberation regarding the flaws inherent in each. Learning should be shared across minority groups.