‘Listening to all voices?’: The politics of ‘lived experience’

Stephen Crossley, Stephen Ashe, Alison Jobe, Hannah King and Sui Ting Kong, all from the Department of Sociology at Durham University, received support from the Social Policy association to hold two events critically examining the concept of ‘lived experience’ and its utility in research, policymaking and practice.

Additional funding was also provided by the Department of Sociology and the Centre for Social Justice and Community Action at Durham University. Supported by members from the Department of Sociology’s Communities and Social Justice Research Group, we invited proposals for a one-day symposium and a one-day postgraduate researcher (PGR) conference the following day.

The idea for the events emerged out of a seminar series within the Communities and Social Justice Research Group where group members discussed concerns about the ways that lived experience perspectives were being used by policymakers, practitioners and researchers. These concerns included:

  1. What are the ethical challenges involved when seeking to produce knowledge(s) by and with rather than about these groups?
  2. Which actors, identities and agendas are typically excluded or marginalized, even within ‘lived experience’ research, and why?
  3. Where, and to whom, do the benefits of research with those with ‘lived experiences’ accrue?
  4. Can the inclusion of accounts of lived experience reflect a diversity of lived experience/ identities? If so, how should we go about doing this?
  5. How should we prevent accounts of lived experiences of marginalised and oppressed groups being co-opted to fit existing agendas?

The interest in the events overwhelmed us, with nearly 100 abstracts across the two days submitted for traditional academic paper streams, workshops, or roundtable discussions. Topics included violence and abuse, trauma, anti-poverty work, racism, mental health, and incarceration, as well as insightful submissions discussing the emotional labour involved in lived experience work and the potential for non-participation as an act of resistance. In order to include as many contributions as possible, we approached those who had proposed workshops or roundtable conversations on similar topics and invited them to collaborate with each other to develop sessions. To their immense credit, everyone we approached agreed to this suggestion.

The events were given the title of ‘Listening to all voices?’: The politics of ‘lived experience’ and were held over two days in March 2023 at Durham University. On March 28th, a symposium took place, attended by over 90 people, with a keynote provided by Marai Larasi, a Black, African-Caribbean-British feminist advocate, community organiser, consultant, and also a Professor in Practice at Durham University. Marai started the day by stating that her lived experiences meant that she was unapologetically subjective in her approach to addressing issues of concern, especially those that affect women and girls of colour.

Delegates were then able to choose to attend paper streams on topics such as ‘Race, intersectionality and marginalisation’, ‘The challenges of co-option’ and ‘Diverse sources, diverse voices?’ or to attend workshops and roundtable discussions on working with young people, lived experience in the context of trauma and abuse, anti-poverty work or lived experience work surrounding mental and physical health.

The day concluded with a panel discussion/provocation drawing on Audre Lorde’s observation that ‘The masters tools will never dismantle the masters house’ with Marai Larasi, Paula Harriott (Prison Reform Trust) and Catherine Donovan (Professor of Sociology and Head of Department) acting as panellists and discussing the inclusion of lived experience perspectives within existing structures and processes.

The following day, a slightly smaller gathering of around 50 PGRs gathered in the same venue to share their work as part of a PGR conference designed by Stephanie Daw, Cait Jobson, Ben Main and Trayten Zhang, all PGRs within the Department of Sociology at Durham University.

Tom Shakespeare (Professor of Disability Research, London School of Hygiene and Tropical Medicine) provided the keynote speech, exploring issues of authenticity in research and the (dis-)advantages of lived experience as a researcher. Once again, delegates had a variety of session they could choose from, including work with young people, lived experience across borders and identities, a workshop on good practice for survivor engagement and research across health and social care practice. The day concluded with a reflective session called ‘Surviving the PGR process: Cultivating the Mental Self’ facilitated by Claire Russell (Beyond Lived Experience Educator and Consultant), and some reflections on the two days as a whole from Dr. Christopher Jones, a former PhD student at Durham University who had recently passed his viva.

The events received very positive feedback from many of the delegates and there was a large amount of interest in continuing the discussions that took place. A new jiscmail list has been created to allow people with an interest in this area to stay in touch with each other and to share resources and developments. Discussions are also taking place around possible publications that might arise from the events, including toolkits for researchers and individuals who have lived experience perspectives to share with non-academic stakeholders and organisations. There were several suggestions for more events on this topic, if anyone is interested in taking up the baton!

You can sign up to the lived experience jiscmail list here https://www.jiscmail.ac.uk/cgi-bin/wa-jisc.exe?A0=LIVED-EXPERIENCE