Critical interloping, collaboration and entangling the ‘expert cultures’ of art, science and lived experience: Jacqueline Donachie’s artist-led research on myotonic dystrophy

The article positions artist-led research as a vital methodology for an engaged, transformative and translational medical humanities. Recent scholarship aligned with the critical visual medical humanities has drawn attention to art practices as epistemologically generative, suggesting that the methods of criticality mobilised by artists offer a distinctive and valuable approach to addressing questions of health. In line with this approach, this article proposes artist Jacqueline Donachie’s sustained collaborative enquiry into the science and lived experience of myotonic dystrophy as a compelling example of how artist-led research can reshape the way scientists and clinicians engage with and understand a particular condition. Donachie’s practice demonstrates how artistic methods—dialogue, observation, ethnographic engagement and aesthetic distillation—can productively entangle scientific and experiential knowledge, foregrounding the perspectives of families and patients whose insights have historically been marginal to genetic research and clinical care. By bringing different expert cultures together in mutually generative conversation, Donachie’s practice raises important questions about how different forms of knowledge are mobilised, and how they might inform and enrich one another. The article contributes to ongoing efforts to conceptualise collaborative knowledge-producing practices across the (visual) medical humanities by advancing the figure of the critical interloper, a practitioner who works between epistemic spaces, drawing together diverse knowledge systems in ways that challenge, unsettle and ultimately bring about change.