At Peer Hub we were fortunate enough to interview Rai Waddingham and Amy Wells about their research and report 'Mapping the Lived Experience Landscape in Mental Health'. Below Rai and Amy answered our questions about the the lived experience landscape and what their hopes are moving forwards.
First of all, tell us about the purpose of undertaking the research?
We felt that it could be useful to “map” the complex and growing landscape of people with lived experience (LE) of mental ill-health, trauma, and/or distress engaging in work where they are drawing on their LE to try to bring about change. There seems to be an increase in situations and places where people with LE are leading on a range of projects, initiatives and organisations. To name a few areas where this type of work is going on: activism, involvement, research, grants panels, the arts, community organisations, work in statutory organisations and across allied sectors… ultimately, we wanted to better understand where (and how) this work that sometimes gets called “lived experience leadership” is taking place and the experiences of people engaged in it, as well as their views on that concept itself.
What were your hopes and aims from conducting the research?
We hoped to understand more about situations and contexts where people with LE were leading on stuff, and what this idea of “lived experience leadership” itself meant to people – in what ways it could be considered a helpful or a harmful concept. We wanted to understand what could help support, sustain, or strengthen this type of work, as well as what made it difficult. We also wanted to see whether there is a role for national mental health organisations and charities, such as NSUN and Mind, to support what gets called “lived experience leadership”, and if so, what that might be.
What was the main message that came through while doing the research?
The concept of “lived experience leadership” is a very tricky one. It is contentious, and there is no one neat narrative of people’s experiences and positions. For some, the idea can be a validating way of thinking about things, and it can encourage a sense of hope. For others, this idea of a leader can invoke feelings of division, hierarchy, and can feel out of step with the more collective values that run through the survivor movement. People might prefer to focus on acts of leadership rather than the characteristics of a leader or use different terms entirely. There is also no clearly defined idea of what constitutes “lived experience leadership” – it looks different in different settings, and there are many different routes to get there. While experiences were incredibly diverse, there was some commonality to be found in challenges faced by people engaged in this kind of work.
What were the key challenges identified for people engaged in lived experience leadership
The challenges identified could be roughly summarised into seven themes:
Unrealistic/impossible expectations: an expectation to be an ‘exemplar’, to be ‘out’ as someone who experiences (or has experienced) mental ill-health, distress, and/or trauma, and also an expectation to be ‘recovered’. There was a sense that the reputation of entire LE leadership workforce rested on one’s own actions.
The fight for credibility: LE leadership was sometimes seen as ‘less than’ other forms of leadership. This, combined with the pressure to be ‘recovered’, led to self-care measures being seen as signs of weakness and unsuitability in certain contexts.
Serving someone else’s agenda: people talked about widespread tokenism and exploitation in this work. This included having a conditional ‘seat at the table’ where lived experience voices may be sanitised to be made palatable.
Not being valued: the experiential knowledge base being undervalued, chronically underfunded/underpaid.
Working in dangerous territories: encountering trolling, microaggressions, gaslighting and toxic organisational cultures that are resistant to change.
The heavy personal toll: the work can be isolating, can ask people to ‘re-open old wounds’ and create new ones, and can cause burnout.
Attacks from others with LE: while many people have found solidarity within survivor-led spaces, many have also experienced harm and judgement from those they consider peers. There is no one monolithic community, and fundamental differences of opinion exist, which can be painful to discuss. This often occurs within the context of a toxic landscape.
How do people engaged in lived experience leadership manage the stress that can come with being engaged in lived experience leadership?
People reported being helped or sustained by a range of different factors – one was connection. Broadly, that encompasses a lot: connection and solidarity with each other as a form of peer support, connection with ‘something bigger than ourselves’, connection with genuine allies, and also connection with things that sustain individuals and collectives. Of course, the pressure to manage the stress of working in these various contexts while using your LE cannot only be the responsibility of the person engaged in the work – it is enabled by the contexts and systems people find themselves within. So other things that helped people doing this work was access to meaningful, impactful opportunities that move beyond tokenism, as well as access to funding for projects or organisations. Being able to have real ownership over your work (as opposed to just ‘being involved’) was important for many contributors. Caring and supportive cultures where self-care (whatever that looks like for people) is the norm and people could be themselves and feel valued helped.
And what changes are needed to address the challenges that people engaged in lived experience leadership identified?
There are lots of potentially supportive endeavours that could help nurture activity that can be called “lived experience leadership” – and any endeavour should be underpinned by principles of being led by people with LE, an acknowledgement of inequalities and harm, and being visibly, genuinely diverse. There is a need for a buffet of options for different people and different contexts, such as LE specific leadership training, mentoring, and support, access to mainstream leadership training, real investment in LE led initiatives, and potentially the existence of an independent body or union to ‘stand in your corner’. In terms of what needs to change systemically for organisations or systems to create supportive contexts for “lived experience leadership” to thrive, there is a need for influential organisations such as mental health charities to lead by example, ensuring “lived experience leadership” is embedded throughout the organisation and genuinely valued and supported – which will take brave intra-organisational conversations with an acknowledgment of where current practices may be tokenistic and harmful. This cannot merely be a change of wording, branding or the creation of shiny new side projects. It requires systemic change and a firm organisational commitment that includes the investment of time and financial resources.
Now that you have published the results, what impact do you hope to achieve with your findings?
We hope that organisations and systems that want to embed people with LE in their work engage with the report and its recommendations, in order to help create contexts in which meaningful change can be made by people with LE, and where people do not face more harm. We hope that people engaged in what gets called “lived experience leadership” can find some solace in seeing a recognition of the challenges and the sustaining factors involved in this work, and that people feel that the diversity of experiences and opinions on the concept of “lived experience leadership” is reflected and honoured. We have also heard of some people engaged in LE-led work using the report to strengthen their voice within larger organisations and validate their experience of harmful practices and unrealistic expectations. Finally, it’s important to emphasise that this report stands on the shoulders of giants – people who have come before us – and is just another step towards talking about the realities of trying to use our lived experience to make changes in a myriad of ways. We are so grateful to all those who shared their experiences and wisdom in the survey, focus groups and interviews. The report is, we believe, so much richer for their generosity.
The peer hub team would like to thank Amy and Rai for their time answering our questions about 'Mapping the Lived Experience Landscape in Mental Health'
You can find the full report by clicking here