While the inclusion of ‘disability lived experience’ is increasingly advocated for in research, policy and practice, its conceptualisation and application present significant challenges. This article, a collaborative effort by 16 individuals with diverse disabilities and expertise, critically examines the limitations inherent in the current usage. We argue that prevailing interpretations of ‘lived experience’ presume subjectivity and over-emphasise narratives of suffering, leading to tokenism and a false dichotomy between lived experience and professional or academic expertise. These issues can undermine the true value and breadth of knowledge held by disabled people. To address these limitations, we propose a crucial distinction between ‘disability lived experience’ – the personal, embodied experience of disability – and ‘disability lived expertise’, which synthesises lived experience with a deep knowledge of the history, concepts, rights and collective experiences of people with disability, the core values of the disabled community, and advocacy skills needed to redesign and reshape the social environment to enable people with disabilities to flourish. This distinction aims not to diminish disability lived experience, but to more accurately recognise and legitimise the developed expertise many disabled people bring to various fields. By recognising the concept of disability lived expertise, we aim to foster more meaningful inclusion, challenge ableist power structures, and ensure that the expert contributions of disabled people are fully valued in driving social change.
Clifton et al. (Thu,) studied this question.