Working with Lived Experience: Issues of Creativity, Ethics and Emergent Knowledges

Working with lived experience involves delicately negotiating complexities and conundrums, that cannot easily be resolved.

This lightning talk will interrogate what it means to work with, from and alongside lived experience - methodologically, ethically and relationally. We will share questions that have perplexed us and the emerging approaches we are developing as part of ‘In Real Life (IRL): Lived Experience Lab’ at University of the Arts London (UAL). For instance: How does lived experience become knowledge? How can creative practice and methodologies help generate knowledge from / with lived experience?

Inspired by van Manen who has posited that we cannot ‘simply access the living meaning of lived experiences through introspective reflection’ (2017, p.812), we foreground lived experience as embodied and affective, sometimes partial, inexpressible or ambiguous. As a lived experience collective, we have become increasingly curious about how difficult it is to articulate what lived experience is, to name its languages and how it should be valued. We suggest this has resulted in uncomfortable silences around epistemological questions about how lived experience is used to create knowledge. These gaps in language and practice form the focus of our enquiry.

Our contribution is shaped by the researchers’ positionality and lived experience, as our identities navigate physical and mental health, disability, patient and practitioner communities, and creative practices within healthcare, art school and community contexts. We will draw on projects we have undertaken and participated in, exploring some of the thorny issues that emerged and what they reveal about lived experience in practice.

References
van Manen, M. (2017). Phenomenology in its original sense. Qual Health Res, 27(6), 810-825.

Biographies
Anne-Marie Creamer is Senior Lecturer for the Art Programme at Central Saint Martins (CSM), University of the Arts London (UAL), co-leading the innovative social prescribing hub Making Better. She is part of the PPIP board for the Bone Cancer Trust, and contributes to Research Together: Patients Guiding the Future of Science (2025). She is also a visual artist.

Dr Hannah Zeilig is Reader in Arts and Health at London College of Fashion (LCF), University of the Arts London (UAL), where she is a researcher and teacher. Hannah’s research focusses on people with dementia and those who live with severe mental illness. Her work is transdisciplinary and she has investigated the possibilities of artistic co-creativity.

Dr Rachel Marsden is curator, researcher and educator. She is Senior Lecturer in Creative Education at University of the Arts London (UAL), and Research Fellow in Creative-Public Health, as part of an NIHR SPHR Transdisciplinary Fellowship at the University of Birmingham and Keele University. She is also Regional Champion (West Midlands, voluntary) for the Culture, Health and Wellbeing Alliance (CHWA).

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