Written by Scott Fitzpatrick – Centre for Mental Health Research, The Australian National University

I have often struggled with the concept of lived-experience. Even before taking up a designated lived-experience role at The Australian National University, I had actively dis-identified as someone with a lived-experience, despite sharing several interests and commitments with the user/survivor movement.

My first point of contact with the notion of lived-experience was through my interest in literature and ethics; in particular, the ‘illness narrative’ – a relatively modern genre of autobiographical and biographical writing. Janet Frame’s, An Angel at my Table (1984), William Styron’s Darkness Visible (1989) and Jean-Dominique Bauby’s (1997) The Diving Bell and the Butterfly were just some of the works I read that had a profound impact on me. These and other powerful, evocative personal stories brought me into the emotional lives of people embroiled in complex and difficult situations, deepening my understanding of illness, madness, addiction, disability and dying.

The relationship between life, experience and narrative is complicated. Experience is a lived, messy and ongoing process, so just how do we separate it from the flow of human life and give it shape and meaning (Fox 2008; Lu & Horner 1998)? Stories are seen as one of the primary ways of imposing order and meaning upon the raw flow of human experience (Abbott 2009). Fashioned through processes of memory, reflection, interpretation and telling, the storying and re-storying of experience emerges not only because of our need to give shape and meaning to our lives, but because of our need to communicate our experiences to others.

Viewing experience as independent from the ways it is represented, however, leaves aside questions of how stories are influenced by history, language and culture. Despite a measure of narrative freedom, the expression of personal or private experiences is always through the prevailing cultural conventions of storytelling such as genre, plot, character and theme (Atkinson 2009). Indeed, the struggle by those with lived-experience to wrest control of their stories from the objectifying, pathologising and dehumanising language of medicine signalled a hard-fought shift toward transforming social and political writing about mental illness, madness, disability, suicide and addiction.

Given that personal stories are shaped by culture and language, they have the capacity to reproduce prevailing cultural norms and beliefs, as well as to transgress or subvert them. My previous work examined the conditions in which stories of lived-experience were produced in suicide prevention and the prevalence of certain story types, most notably those of recovery and resilience (Fitzpatrick 2016; 2020). Similarly, for those conducting qualitative research into people’s experience of health and illness, the ethics and politics of representation are nested within important questions of truth, power, social reality and voice. Like quantitative research, qualitative research provides ‘ways of seeing’ that privilege and value certain kinds of evidence, reasoning and knowledge over others.

Stories also play an important role in identity formation – both the stories we tell ourselves and those that are told about us. Perhaps my biggest concern in taking up a designated lived-experience role was the sense of discomfort I felt in having to potentially disclose my personal experiences to others. This was less to do with any concerns over authenticity or legitimacy as described by Veronica Heney, but rather out of the fear that some singular identity category was about to be thrust upon me and the implications of this both personally and professionally (Heney & Polykett 2022). Fortunately, as my position allows, it is enough for me to identify as someone with a lived-experience without having to disclose my story or fit within some prescribed definition of what lived-experience entails.

Writing from the first-person, Heney notes that this claim to privacy is not equally shared by all (Heney & Polykett 2022). Like Heney, my position within the academic space affords me certain privileges, allowing me to position myself as a scholar rather than as a service user or survivor. However, as Heney acknowledges, there are those whose race, class, disability, or particular experience of illness and/or distress restricts their access to these spaces and the protections they provide.

Jijian Voronka (2016) raises a set of related questions about identity, difference, social position and organisational culture that further unsettle established uses of the term ‘lived-experience’ and the practices of knowledge production authorised under its name. First, how does positioning ourselves under the collective banner of ‘people with lived-experience’ work to erase important differences (for instance, those between individuals who identify as peers, service-users, carers, psychiatric survivors, or mad)? Second, how do individuals come to be recognised as qualified lived-experience experts able to gain access to and work within mental health or other professional spaces?

Individuals invariably use their lived-experience in different ways within different contexts. The conditions in which lived-experience knowledge is produced, therefore, are important for understanding the possibilities and limits of knowledge production (Voronka 2016). For Voronka, this is especially important where individuals with lived-experience are asked to represent others, or where those with lived-experience work collectively to produce knowledge outcomes.

Negotiating critical differences and the authority of lived-experience in these situations can be difficult. There are times where this can be creative and productive, but equally, it can also lead to conflict and complicity with existing systems of power. In drawing attention to the ways that knowledge is produced under the “rubric of ‘lived-experience’”, Voronka (2016) invites us to consider the risks of conflating important conceptual and ideological differences, and the boundaries of occupying such an identity within mental health research and service systems.

Reflecting upon the concept of lived-experience calls for careful analysis of its underlying norms and values, the knowledge generated from it, and the subsequent social and material outcomes. Such reflection, I believe, is necessary to tackle important ethical and political challenges within lived-experience practice while advancing the field.

References

Abbott, H.P. (2009). The Cambridge introduction to narrative. Cambridge: Cambridge University Press.

Atkinson, P. (2009). Illness narratives revisited: The failure of narrative reductionism. Sociological Research Online 14(5).

Fitzpatrick, S.J. (2016). Ethical and political implications of the turn to stories in suicide prevention. Philosophy, Psychiatry, & Psychology 23(3-4): 265-276.

Fitzpatrick, S.J. (2020). Epistemic justice and the struggle for critical suicide literacy. Social Epistemology 34(6): 555-565.

Fox, K. (2008). Rethinking experience: What do we mean by this word ‘experience’? Journal of Experiential Education 31(1): 36-54.

Heney, V., & Poleykett, B. (2022) The impossibility of engaged research: Complicity and accountability between researchers, ‘publics’ and institutions. Sociology  of Health & Illness 44(S1): 179-194

Lu, M-Z., & Horner, B. (1998). The problematic of experience: Redefining critical work in ethnography and pedagogy. College English 60(3):257-277.

Voronka, J. (2016). The politics of ‘people with lived-experience’: Experiential authority and the risks of strategic essentialism. Philosophy, Psychiatry, & Psychology 23(3-4): 189-201.

About the Writer

Scott Fitzpatrick – Centre for Mental Health Research, The Australian National University

Scott is a Research Fellow in the Lived Experience Research Unit at the Centre for Mental Health Research, The Australian National University. Scott is an interdisciplinary scholar whose work is grounded in the sociology of health and illness, public health, and applied ethics. His research interests are suicide, the social and political determinants of health, and lived experience. Scott is especially interested in broadening contemporary ethical discussion of suicide and its prevention within the fields of research, clinical, and public health practice and policy by examining the intersection between knowledge, practice, ethics, and politics.

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