Joannah Griffith (conference steering group) reflects on the Social Power and Mental Health: Evolving Research Through Lived Experience conference which took place online in April 2021.
Two years ago I was in the final stages of my Clinical Psychology MSc. I attended two academic conferences presenting my research. Both were daunting and I felt uncomfortable about how close I was to my subject of prescribed Benzodiazepine withdrawal. I had been through it. Despite my endeavours as an Expert by Experience with CPFT, I questioned my expertise: What did I really know? Through years of being sat in the seat of the ‘patient’ relating very much to the powerless experiences of my participants, who was I to harness my personal agency and talk about these things? My fears were sometimes reflected in comments on my work: ‘Do people still do exactly what their doctors say?’ scoffed one academic (the implication being that developing dependence is a personal flaw – a painful suggestion to someone who had been restrained and forcibly medicated countless times). I felt like an imposter.
So, when I received the email about a conference on Social Power and Mental Health I was both curious and sceptical. I love a challenge but it felt like a radical idea - you’re lucky if there’s a couple of people at a conference with lived experience of the subject in question. Even then, you don’t typically find them speaking – that is left to the “real” experts! Could this be done in an authentic and purposeful way?
Joining the steering group was refreshing from the start. We passed around ‘A Simple Guide to Co-Production'from Recovery In The Bin, a satirical leaflet highlighting the downfalls common in this type of work. It included points on gratitude: “Be so grateful for being heard that you learn to live off the power of your own gratefulness. Do not request a living wage.” and presentation: “If you are not recovered enough to be socially acceptable, please ensure you conceal this in public.” Many of us smiled, with experiences of unpaid emotional labour these points were familiar, but now the chance to challenge them was here! I certainly didn’t feel like an imposter now and we were all going to be paid too!
When the pandemic hit, we moved to online contact and eventually decided to host the conference online too. Planning was very much democratic, we discussed and we voted: eg. On things like whether we would call the conference a conference (I’d only just learnt what one was!), prospective keynote speakers, and wording of the call for papers. We wanted to ensure that it was inclusive and accessible: people could apply with or without academic qualifications and we really wanted them to! Who did we feel would best tackle some of the issues at the heart of social disempowerment for people suffering from mental distress? Showcasing work by those with lived experience became a clear priority. This felt hopeful and comforting to me personally. Interestingly, some quandaries of social power arose in planning around speaker fees, speaker affiliations and funding origins. These were discussed in an open way; everyone was heard and collectively we made decisions that we felt were best for our conference. It certainly felt that it was ours rather than something we were helping with.
The conference itself I felt could not have gone more smoothly. Engagement of attendees was very important to us and in addition to Q&As, we invited ideas, thoughts and comments. They included lessons for mental health services, activists, government politicians, and researchers. These fantastic insights will be drawn on in the continuing work of the steering group.
A point I want to end on was made in discussion on Twitter, essentially: ‘What about those who are too mentally unwell to participate in such an event?’. Initially I felt defensive and concerned for our speakers: was this gatekeeping of mental distress? Would they feel that they were not mad enough? The conversation unravelled and one of our keynotes, Rai Waddingham, spoke eloquently about a recent experience of being cut off for being too open with her distress. I thought back to my own acute psychiatric stays, to my inpatient friends and how unwell we were. Something like this would likely not have been possible to engage with. I realised, of course it was a good point – what about those people? To have so many people with lived experience speaking and in attendance (both majorities) was a fantastic accomplishment, however, there remains much work to be done. We need to continue pushing for a culture of lived experience being drawn on as the invaluable resource it is. Our voices are fundamental if we hope to ensure that the systems there to serve us meet us in the reality of our situations.
The steering group are continuing projects to this end, including writing up a local mental health plan and intend to publish academic work on the conference. Updates on these can be found on our Twitter page @SocialPowerMH.
The conference was hosted by CRASSH in April 2021. It began with two panels on Covid and Mental Health and Black Mental Health. Shortly followed by sessions themed around Psychiatry and Other Systems, Activism and Hope, and Social Inequalities and Justice. Our keynotes Imogen Tyler explored Mental Distress in Austerity Britain and Rai Waddingham Listening to ‘Mad’ Voices in a Crazy World.
Written by: Joannah Griffith, Independent Researcher, EbE with CPFT, and Origami Advocate
The views, thoughts and opinions expressed on the CRASSH blog belong solely to the authors and do not necessarily represent the views of CRASSH or the University of Cambridge.