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Research on disability issues should be done with or by Persons with Disabilities as experts with lived experience. As such, a collaboration that uses participatory methods is significant to ensure Persons with Disabilities can meaningfully participate in research co-production. This chapter shares reflections and takeaways of co-researching with Persons with Disabilities as co-researchers in Indonesia in a post-disaster context through dialogue. The authors met via videoconferencing and had collaborative conversations to reflect on co-researching processes, including expectations, successes, challenges, impacts of co-research, and the learning from using participatory methods. The authors write with six individual voices to emphasise different positionalities and experiences. By using a dialogical approach, the authors seek to demonstrate the dynamics of managing a participatory co-production of research, which entails some complexities in shared decision-making and power relations among collaborators from different backgrounds.
This chapter narrates the lived experience of the author, a researcher who publicly identifies as a transwoman/transfemme or Thirunangai (Tamil equivalent of transwoman) from Chennai, India. Using an autoethnographic approach, the author acts against the universalisation and homogenisation of sexual and gender diversity and trans and gender diverse lived experience. Estelle first establishes her positionality as related to lived experience-led research and how such approaches can be decolonised and disrupted. Then, she talks about her experiences at different stages of her life and explains her reasons for wanting and choosing to become a researcher on sexual and gender diversity and trans and gender diverse people. Finally, Estelle shares her lived experience as a researcher. She takes a stand on research ethics and the current issues in relation to research on sexual and gender diversity and provides suggestions for researchers who may be interested in pursuing research on these topics.
How can knowledge based on lived experience dismantle norms in the academy about what counts as expertise and whose perspectives are valued? This book aims to disrupt dominant approaches to researching lived experience and rethink what constitutes knowledge. People with direct experiences of social injustices know the nuances and complexities of their experiences and are best placed to speak about them and contribute expertise on problems and solutions. However, the unique and subjective insights grounded in lived experience-led knowledge are still undervalued. The chapters in this edited collection re-value lived experience as a rich form of knowledge that can lead research, teaching and advocacy efforts towards social justice. The contextual insights in each chapter firmly position lived experience-led scholarship as an ethical and meaningful pathway to decolonise and disrupt dominant approaches. Using diverse methodologies, the authors contribute to reversing the overreliance on the perspectives of privileged scholars and researchers with limited experiences or knowledge of the issues about which they claim to have expertise. The chapters outline culturally safe and trauma-informed approaches to create spaces where experts by experience can exercise agency in social justice-focused initiatives. Rather than claiming a singular ‘truth’ about lived experience-led expertise, the authors take readers along a journey of understanding complexities and messiness to inform ethical and collaborative practices. Collectively, we challenge readers to consider how they value knowledge grounded in lived experiences and how they should engage with lived experience-led research and scholarship.
This book firmly positions lived experience-led expertise as a unique and compelling form of knowledge in decolonising and disrupting research, teaching and advocacy.
Based on the insights of people with first-hand experiences, each chapter presents unique accounts and reflections on a diverse range of social justice issues. Together, the authors’ perspectives centre lived experiences in the production of knowledge, challenge outsider-imposed views, and create new research and writing norms. They demonstrate that when lived experience experts lead the way, their knowledge of how to address social injustices can enrich, transform and decolonise research, teaching and advocacy.
This collection is an invaluable resource for academic and community-based researchers, practitioners, advocates, educators, policymakers, students and people whose lived experiences and views continue to be marginalised across diverse settings.
This chapter reflects on two under-explored ethical ideas in co-research with people from refugee backgrounds – the ethics of relationship and the ethics of witnessing and documenting. It critically assesses accepted practices in refugee studies including presenting lived experience narratives in mediated forms, lack of attention to epistemic justice, and culturally unsafe norms and practices. By delving into their own experiences of collaborative research, as well as sharing vignettes about their research training, the authors crystallise ideas about lived experience as a creation of the collective, as well as ways to conduct research that are culturally relevant, safe and meaningful for communities. The authors suggest a rethink of informed consent, knowledge co-dissemination, and inclusion of diverse worldviews to promote lived experience agency and the decolonisation of co-research in refugee studies.
This chapter outlines how culturally centred and community-led research is renewing Wiradyuri language, history and culture. Indigenous nation building involves research by, for and with Indigenous peoples, and is being applied to demystify knowledge production, recognising Wiradyuri Elders and their allies as having the ability to undertake research into areas, topics and issues that are important to them. The authors explain that Ngaabigi Winhangaguigu (or, in English, ‘research’) only exists in its relationship with the researcher, and describe how Ngaabigi Winhangaguigu is rebuilding nationhood, enabling cultural renewal and strengthening identity. The multi-award-winning Graduate Certificate in Wiradjuri Language, Culture and Heritage at Charles Sturt University exemplifies the Indigenous nation building that has been undertaken by key community spirited Wiradyuri Elders and others they co-opted to support their vision, to examine their knowledge systems to solve their own problems, and determine, for themselves, futures of their own design.
This chapter explores the co-design process undertaken during a men’s suicide prevention research project in Sydney, Australia. The chapter conveys the perspectives of 11 of the 16 men with lived experience of suicide attempts (Lived Experience Advisors) who worked with academics and other professionals to develop ideas for strategies intended to reach men at risk of suicide who do not have contact with mental health services – those who ‘fly under the radar’. The Lived Experience Advisors (including four who chose to remain anonymous) felt that the co-design process failed to consider pivotal issues related to their lived experiences. Along with thoughts on their individual experiences of the project, they share individual creative reflections on their suicidal ideation and on other reasons why they fall ‘under the radar’.
The final chapter discusses the potential of lived experience-led knowledge to dismantle academic norms and outlines why disrupting such standards is increasingly important. As the diverse contributions in this edited collection demonstrate, there are strengths to lived experience-led scholarship that no other approach to research can replicate. However, the ongoing silencing and manipulation of lived experience in academic contexts has sabotaged efforts to effect meaningful change for those experiencing injustices first-hand. Lived experience-led scholarship has the potential to dismantle the academy because it addresses recurring concerns in social justice research and literature about what constitutes knowledge and whose perspectives are valued. Such research is unapologetically personal, inherently intersectional and undeniably visible. These characteristics challenge long-held notions about what quality research should prioritise and address epistemic injustices in the literature. We conclude with reflections on the enriching and challenging aspects of editing this book.
This chapter reflects on the creation and implementation of the CORE Pacific Collective, a group of Pacific leaders from five Pacific initiatives working together to support a collaborative response to the COVID-19 pandemic. In 2021, Pacific communities in New South Wales, Australia, were deemed a priority health group. Health services and local community groups were keen to create a rapid response to ensure co-morbidities including higher rates of diabetes, cardiovascular disease and obesity did not negatively impact Pacific community members if they contracted COVID-19. This response was hampered by limited awareness on the severity of the virus and mistrust in the effectiveness and safety of the vaccines. The chapter explores intersecting themes of lived experience, including the role of Pasifika elders, leaders and loved ones play in supporting the mobilisation of communities, and the commitment to nurturing vā (sacred spaces) with family and community through a whole-of-community and whole-of-government approach.
How can knowledge based on lived experience dismantle norms in the academy about what counts as expertise and whose perspectives are valued? This book aims to disrupt dominant approaches to researching lived experience and rethink what constitutes knowledge. People with direct experiences of social injustices know the nuances and complexities of their experiences and are best placed to speak about them and contribute expertise on problems and solutions. However, the unique and subjective insights grounded in lived experience-led knowledge are still undervalued. The chapters in this edited collection re-value lived experience as a rich form of knowledge that can lead research, teaching and advocacy efforts towards social justice. The contextual insights in each chapter firmly position lived experience-led scholarship as an ethical and meaningful pathway to decolonise and disrupt dominant approaches. Using diverse methodologies, the authors contribute to reversing the overreliance on the perspectives of privileged scholars and researchers with limited experiences or knowledge of the issues about which they claim to have expertise. The chapters outline culturally safe and trauma-informed approaches to create spaces where experts by experience can exercise agency in social justice-focused initiatives. Rather than claiming a singular ‘truth’ about lived experience-led expertise, the authors take readers along a journey of understanding complexities and messiness to inform ethical and collaborative practices. Collectively, we challenge readers to consider how they value knowledge grounded in lived experiences and how they should engage with lived experience-led research and scholarship.
