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

Abstract

AbstractInterventions 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 prioritizing 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 study 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.Related ArticlesEwert, Benjamin. 2021. “Citizenship as a Form of Anticipatory Obedience? Implications of Preventive Health Policy in Germany.” Politics & Policy 49(4): 891–912. https://doi.org/10.1111/polp.12421.Grijalva Maza, Luisa. 2012. “Deconstructing the Grand Narrative in Harry Potter: Inclusion/Exclusion and Discriminatory Policies in Fiction and Practice.” Politics & Policy 40(3): 424–43. https://doi.org/10.1111/j.1747‐1346.2012.00358.x.Winburn, Jonathan, and Amanda Winburn. 2020. “The Role of Political Ideology in Public Opinion toward Enumerated Antibullying Policies in Public Schools.” Politics & Policy 48(3): 442–63. https://doi.org/10.1111/polp.12355.