Representing disabling experiences:Rethinking quality of life when evaluating public health interventions

Interventions that promote public health have the potential to transform lives, particularly for those who experience disability, where marked social and material inequalities occur across the life-course. When evaluating such interventions, health-related quality-of-life is regarded as a primary outcome and used to inform evidence-based practice. Quality-of-life measures, however, are not straightforward heuristic devices but express technologies of epistemic power. By prioritising methodological certainty over the credibility of personal testimonies, those experiencing disability can find themselves excluded from the evidence-base, on which public health interventions are based. Our paper explores how disability is represented by tools informing evaluative public health research and establishes the possibility of alternate practices, including the potential for more appropriate measures better suited to representing experiences. We conclude, by considering how discussions about “flourishing” can create more inclusive and empowering practices, able to challenge inequalities and discrimination, consistent with a commitment to social justice.