IRL: What it Means to Work with Lived Experience - Creativity, Power and the Ethics of Emergent Knowledges

Working with lived experience involves negotiating complexities that resist easy resolution. The body and mind in illness disrupt the tacit assumptions of health, making acute van Manen's (2017) observation that we cannot 'simply access the living meaning of lived experiences through introspective reflection.' When experience resists coherence, articulation reveals language's limits.

This difficulty is phenomenological and political. Building on Havi Carel's theorization of epistemic injustice in healthcare (the EPIC project) —where illness testimonies are systematically discredited and hermeneutical resources fail those navigating chronic conditions—we trace how research structures reproduce what they claim to redress.

Drawing on Scarry's analysis of pain's resistance to language and Voronka's critique of 'lived experience' as extractive credential, we argue creative practice offers epistemological possibilities that neither demand verbalization (Scarry) nor enable easy extraction (Voronka).

We propose "interstitial epistemology": knowledge emerging not despite but through hyphenated artist-researcher-patient identities. Positioned within IRL (In Real Life), a collective at University of the Arts London, this is political practice, not methodological refinement. IRL's collective governance equalizes different forms of expertise, emphasizing that chronic ill-health is systemic, not merely individual.
Through creative methodologies—visual, poetic, musical—we attend to moments when narrative cannot hold experience. Following Scarry, we explore how pain and distress can be "world-destroying" (reducing a person's universe to suffering), "making" is "world-creating," enabling shareable realities as vital ethical acts.

We believe ambiguity inherent in creative practices—a sense of 'not knowing' (Fortnum, 2013) outcomes as work is made—offers scope to resist instrumentalization that Voronka (2016) problematizes and institutions engender. We foreground lived experience as embodied and affective, sometimes partial, or inexpressible. We explore uncomfortable silences around epistemological questions about how lived experience is used to create knowledge. We will draw on projects we have undertaken and participated in, exploring some of the thorny issues that emerged - gaps in language and practice - and what they reveal about lived experience in practice, as we explore 'knowing otherwise' via creative practices.

We ask: What would our research structures and institutions look like designed by and with lived experience from inception?

BIOGRAPHICAL NOTE (100 words):
Anne-Marie Creamer is Senior Lecturer at Central Saint Martins (UAL), co-leading Better Making social prescribing hub, a visual artist, and works with Bone Cancer Trust and EURODIS Open Academy.
Dr Rachel Marsden is Senior Lecturer in Creative Education at UAL and NIHR Research Fellow in Creative-Public Health (Birmingham/Keele, 2027). Her practice-research spans creative health, medical humanities, and disability justice. She is Regional Champion for the Culture, Health and Wellbeing Alliance.
Dr Hannah Zeilig is Reader in Arts & Health at London College of Fashion (UAL), researching dementia, mental illness, and artistic co-creativity through transdisciplinary approaches.
Together they founded IRL (In Real Life): Lived Experience Lab, a collective challenging hierarchical research structures.

References:

• The EPIC Project, PI: Professor Havi Carel, Department of Philosophy, (University of Bristol), a 6-year research project on epistemic Injustice in Healthcare (EPIC) project, UK. Link: https://epistemicinjusticeinhealthcare.org
• Fisher, E., & Fortnum, R. (Eds.). (2013). On Not Knowing: How Artists Think. Black Dog Publishing
• Scarry, E. (1987). The body in pain: the making and unmaking of the world. Oxford University Press.
• van Manen, M. (2017). Phenomenology in its original sense. Qual Health Res, 27(6), 810-825.
• Voronka, J. (2016). The Politics of 'people with lived experience' Experiential Authority and the Risks of Strategic Essentialism. Philosophy, Psychiatry, & Psychology, 23(3), 189-201

About the Symposium
The Department of Sociology and Criminology at University College Cork invites participation in an international interdisciplinary symposium that will explore how lived experience is used, interpreted, and debated in politics, research, and activism.

This event will bring together scholars and practitioners who are interested in engaging critically and constructively with the uses of lived experience in contemporary public life. It will offer an opportunity to reflect on how the language of lived experience shapes knowledge, power, and solidarity, and to consider how we might work with it in more dialogical, reflective, and politically attentive ways.

The symposium will take the form of a collaborative and discussion-based gathering rather than a large public conference. Participants will circulate and discuss short draft papers in advance, and a small number of respondents will be invited to comment on particular papers. Each session will focus on collective reflection and exchange, fostering open and engaged dialogue among participants.

The symposium takes inspiration from key works that have opened new ways of thinking about lived experience, among them Joan Scott’s The Evidence of Experience, Jijian Voronka’s The Politics of People with Lived Experience, Mcintosh and wright, Exploring what the Notion of ‘Lived Experience’ Offers for Social Policy Analysis, Moore-Ponce’s Beyond Guilt: Deploying Lived Experience for Solidarity and Social Change, and related research such as Anna Wierzbicka’s reflections on ‘experience’, meaning, and cultural understanding.
Symposium Focus

The symposium will examine how lived experience functions both as a claim to knowledge and as a site of power and contestation. It invites reflection on how lived experience is authorised, how it circulates, and how it is received within political, academic, and activist contexts.

Participants will be encouraged to consider how different structures of power, belief, and emotion shape what counts as legitimate or valuable lived experience. Together we will reflect on how lived experience might be reimagined as a collaborative and transformative process, and how it might contribute to forms of solidarity and social change that are both critical and generative.

The symposium aims to provide a space for sustained and thoughtful engagement with these questions, encouraging open, critical, and creative dialogue about the possibilities and limits of lived experience in contemporary public life.

Contributors
Contributors will include Kerri Woods (University of Leeds), Molly Rosabelle Ackhurst (University of Greenwich), Jenny Pearce (London School of Economics), among others.

A roundtable with these and other invited scholars will explore the conceptual, ethical, and political challenges raised by lived experience as a category of knowledge and practice.

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