Maree Higgins and Caroline Lenette (eds) Policy Press, Bristol, 2024 pp 194
ISBN: 9781447366348 (pbk)
Expert-knowers write chapters in this work, challenging academic norms, while providing potent examples of lived experience-led research. The epistemic justice framing in which lived experiences are prioritised and honoured, entwines with social justice.
As Estelle Keerthana Ramaswamy notes: ‘Authors should declare their positionality in their research and writing to facilitate the readers’ understanding as to why an author posits certain opinions in a certain way’ (p. 121). Readers need to know where research and storytelling emerge from – a practice I particularly subscribe to as a person with disability working in research and living in a society that still has barriers, practices and attitudes that delimit our full participation and inclusion.
Editors Higgins and Lenette draw on Lorgia Garciìa-PenÞa: ‘Academia’s power resides precisely in its exclusivity and exclusion’ (p. 152). In contrast, this book involves those at the fringes – respectfully relating their different ways of being, knowing and telling. If research is to benefit communities, researchers need to be part of individual communities, tapping into the expert-knowledge within them. This means lived experience leadership, lived experience researchers, lived experience informants, aided by allies who are immersed and invested in communities. Undeniably, truth and authenticity exist in these often marginalised experiences.
There are many acts of resistance, small and large, within this book. Each chapter introduces a marginalised group which relates experience through non-traditional output. One of the major concerns of the text is to promote the decolonisation of language. Chapter Two, ‘Examining for the purpose of knowing: Ngaabigi Winhangagigu’, tells of the reintroduction and rejuvenation of the Wiradyuri language led by the Elders, teachers and students who become teachers with knowers’ perspectives. As Uncle Stan Grant writes: ‘Language has the power to draw you in. It locates you, it gives you strength, belonging and connection’ (p. 32).
In ‘Ethical and decolonial considerations of co-research in refugee studies: What are we missing’, Sudanese researcher Atem Dau Atem tells of realising the word ‘interview’ cannot be used since it is too closely associated with police, interrogations, torture and trauma.
Chapter Five on disability research in Indonesia highlights the issues when local dialects in regional and rural areas differ from the language of the researchers in the capital city. The Pacific islander community’s experiences with Covid-19 (Chapter Eight) also underlines the importance of prioritising the information needs of marginalised groups in both disaster relief efforts and in research.
Too often the perspectives of the participants in research are missed. Here, the creative responses of participants/researchers in the Sydney- based Black Dog Institute’s ‘Under the Radar Project’ on suicide prevention in men, are memorable. One writes a poem, ‘My only friend the end’, about his intense suicidal thoughts and, paradoxically, the comfort they give him (p. 68).
Disrupting the academy necessitates embracing what Higgins and Lenette call the ‘messiness’ of lived experience-led research which can be ambiguous, fluid and shifting. In Chapter Seven, Ramaswamy, a transwoman/transfemme, argues that trans and gender diverse research should be lived experience-led and not undertaken by others ‘however noble their intentions may be’ (p. 129).
This work demonstrates that melding lived experience, lived experience leadership and scholarship, works for knowledge building and community benefit. So live dangerously: read and internalise this work’s premises. Commit an act of resistance by reflecting and challenging your research practices – disrupt the academy.
Dr Annmaree Watharow, Research Focused Academic, University of Sydney, Australia