If you are someone who openly uses your lived experience of adverse mental health (or what is affectionately known as being 'a bit mad'), you will know that it is work that comes with unique challenges. The picture above illustrates just a fraction of these in terms of barriers that even qualified and experienced 'Mad people' face... however, it runs much deeper than (not) being valued through renumeration (i.e. shit/zero pay) and career opportunities (i.e... what's that???).
One of the biggest issues we face is accessing support for the emotional demands of our work, in terms of tailored supervision that addresses the unique area we inhabit when we draw on internal knowledge to provide insight for the work we do. In doing so, we manage a shifting balancing act between self-disclosure that adds insight, versus telling a story that entertains an audience but leaves us feeling vulnerable or exploited after the fact. We also face the tension of working within teams where our colleagues - clinicians who may also have lived experience - are working from models which don't allow them to openly use their own lived experience.
Sadly, there are currently no formalised models for supervision and support for Lived Experience staff - but that doesn't stop there being a need, which we all find different ways of meeting. There are pockets of a few of us working to address this - NSUN has an Involvement Support group, I've heard of some work in Sussex being done to address this (thank you for the info #MadTwitter), and recently I joined some colleagues from the 'Post Personality Pioneers' collaborative to start developing something to suit the needs of Lived Experience Practitioners who work in senior, specialist or strategic roles.
However, there are so many people working disparately, particularly in Peer Support worker roles, who have very limited access to continuing professional development, or networking with people who work in the same field across different organisations. Some areas have thriving activist and/or Lived Experience Practitioner scenes where there is a lot on offer (here's looking at you, London!) but for those of us in other areas, very little is available locally.
Conversations with colleagues locally have revealed a need for *something*, and these reflect pockets of activity elsewhere. I have also been reflecting a lot on factors that have supported me in my work, since starting working in this field in 2010. I have always found the informal conversations snatched with colleagues working in other organisations or teams helpful. Hearing similar issues existing elsewhere helps to understand these as systemic ones rather than internalising them as evidence of personal faults. Sometimes this knowledge alone is enough to divert burnout and to cope with the negative feelings associated with perceived failure or disempowerment.
The other supportive factor that has been essential has been access to education and knowledge. I have recently completed the KUF (Knowledge & Understanding Framework) Master of Science qualification, which was undertaken in the capacity of a Lived Experience Practitioner. Each module assignment had to be relevant to our working practice, which meant taking papers generally written from a clinical/theoretical perspective and translating the knowledge to an experiential one. Sometimes the two types of knowledge were happy partners, other times they fought or didn't meet easily. The process of doing this helped to provide me with an insight into the difficulties that we face as Lived Experience Practitioners in multi-disciplinary teams. There is an uneasy hierarchy, and we always tend to fall to the very bottom of this. Understanding why - through lots of referring back to theories of group dynamics and work exploring difference - helped me to understand what was happening. It didn't make it any less discriminatory, but it somehow made tolerating it easier.
'Mad' academia is a thing. We have professors, doctors, academics and researchers who publish work from an experiential lens. We also have a wealth of 'grey literature' - blogs, articles and writing from people who are active in our field. There is even a Facebook group. The problem is that we often don't know about it, and organisations we work with are often working from a non-experiential lens and don't have the knowledge in this area to signpost us to sources of information from people who have worked and studied in our field and have written or researched the issues we currently face.
This brings us to the inspiration behind a 'Mad Studies' group for Lived Experience Practitioners. A group where people who use their Lived Experience openly within their work can meet, identify and discuss literature written by their peers that they feel is relevant to their working issues. A group where they can feel less alone - just by being with others who share similar working issues. A group where they can learn and feel empowered within their work. A group to strengthen against burnout and distress.
This is the dream... the reality is something that we will start to navigate and shape ourselves, starting this Thursday, 7 February, 5pm @ Java Lounge, 115 Alcester Road, Moseley, Birmingham, B13 8DD.
The group will discuss Professor Peter Beresford’s recent work which highlights the greater difficulty that grassroots, service user led initiatives face in gaining funding when compared to larger Mental Health organisations or charities. Click on the links below for a copy:
Attendees will decide the day, time, venue and frequency of future meetings.
If you can come, please indicate by booking here - it is free and open to anyone, but it would help to have an idea of numbers! If you are interested in future sessions, please let me know and I'll pop you onto the mailing list. Presently these sessions are unfunded, so you will need to purchase your own refreshments - Java Lounge is an excellent independent coffee house, there is a good range of drinks and yummy things available.
Looking forward to seeing those of you that can make it :)
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