Ros B, April 2021

Our third blog in a short series exploring what "lived experience leadership" means to us.


In an ideal scenario, lived experience should be used to enhance, rather than define. It provides the opportunity for a level playing field which at its best can lead to more honesty, respect, openness and even enjoyment in client-worker relationships. To me it means a sharing of experiences, empathy and a non-hierarchical approach to work that cannot be replicated through training or simulation. Everyone’s past influences how they act and react in life and my experiences of mental health services and the wider state system are no different. They inform everything I do in my work, in a way I am sometimes probably not even conscious of. Just like everyone else, my lived experience is unique to me. Parts of it seem to have dragged on over time, whilst other parts have been comparatively short-lived and followed a very different trajectory to that of many others in a similar situation. This is because, despite my experiences of oppression and hardship prior to and during the time I was struggling, I was also simultaneously occupying spaces of privilege within society which meant that my path out of this was seemingly more straightforward, and, hopefully, more permanent.

So, for me and my lived experience, I have been one of the fortunate minority who has gained employment because of my experiences rather than them being stacked up as yet another barrier to ‘fully-fledged member of society’. But lived experience leadership seems to be a far-off notion – something I am yet to see in practice, but I enjoy how it sounds. Leadership in it’s very essence suggests a level of power and hierarchy and one we are so used to experiencing given how hierarchy and power defines all of the structures and systems within which we operate. Whereas lived experience of those very structures and systems is just that – something that, until this point, has been very much seen and very much not heard. We know the benefit of lived experience roles and they have been hugely successful across several sectors not just mental health but also homelessness, HIV+, addiction, etc. but these roles always seem to be confined to the frontline, and kept far away from the places of influence, decision-making and, most pertinently, leadership.

In my experience, my lived experiences have been somewhat of a hinderance in my access to the ‘professional’ world and a full recognition of me as an equal to my colleagues. Because my knowledge and experience of services was acquired on the wrong side of the fence. There is an understanding that, as lived experience practitioners, we can push the status quo; it is in the bread and butter of our jobs – but we can’t do it too much if we want to be accepted. There appears to be a very fine line that implies we have just enough of the personal experience but without the hurt and pain and the identity and politics that surround it. We must ‘be professional’ at all times meaning we must never be too loud, too abrupt, too emotional or too different from what is deemed ‘normal’ workplace behaviour. There is an unspoken rule that you must ‘leave yourself at the door’ yet, in my experience, the easiest way to get someone to listen is to preface my opinion with a personal testimony of my experience. This isn’t because I think my experience is more important or gives me authority on a matter, but because this is what I have been conditioned to do on the other side of the fence. As mirrored by wider systems in society, we often demand personal testimony and information from our clients and service users before we give any credence to what a person is saying.

So if we try to insert our lived experience into the current system we only perpetuate those hierarchies that have got us there in the first place and, more importantly, we only give way to certain people and their experiences. A person who does not fit the ‘professional’ mould will never be able to access these spaces. That’s not to say there aren’t people in leadership positions with lived experience, but at some point along the line those experiences have been buried and ignored and never disclosed. Lived experience holds currency but only till a certain point. When we box away the beauty of what it is to be human, along with that we hide all the messiness, inconsistencies, values and wisdoms which make us. I believe that our unique position as having lived experience can be a balance of the personal, where we celebrate human connection, with the professional where we champion knowledge and support.

I think the idea of lived experience leadership is exciting and intriguing, but I think the reality of it is a long way off. While we have to operate in hierarchical structures, and in the very systems that have often harmed us, we will never be able to truly be led by the richness and depth of experiences that people have lived. Putting everyone in the same room does not make for the level playing field I initially hoped for, we need to breakdown and explore the wider power structures that have got us to that room in the first place.


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See below for an explanation of the terms lived experience and lived experience leadership from NSUN Associate Rai Waddingham's recent mapping project:

"What do I mean by ‘Lived Experience’?

Everyone has experience of living. But when I say ‘lived experience’ I’m referring to a particular kind of experience - experience of mental health issues, being a client/patient of mental health services, being diagnosed with a mental health problem and/or hospitalisation.

It’s a clumsy term, but it’s the best one I have at the moment. I’m using it because I believe there is a big difference between going through experiences like these and supporting someone else through them.

What do I mean by ‘Lived Experience Leadership’?

The term ‘Leadership’ is contentious. It can validate, invalidate, excite, irritate and bore people. It may be that the term ‘leadership’ offends or annoys you. If that’s the case, I hope you still contribute to this project as you have something important to offer that needs to be heard.

A large part of this project is about engaging with the questions, complexities and debates around lived experience leadership. We want to understand and give space to different viewpoints, rather than gloss over them and produce a single narrative and pretend it is the truth.

Whatever words we use to describe them, I hope to learn about initiatives and situations where people with lived experience are involved in organising and/or influencing.

This could be:

  • At home, in our local area, in cyberspace, regionally, nationally or internationally
  • With words, actions or in more creative ways
  • As part of a named role, or not
  • In a paid, unpaid or partly paid
  • Acknowledged by others, or unseen
  • Involving a few people, or thousands
  • Involvement, co-production, research, peer support, community development, media, training, organising, writing, activism, policy or something I haven’t yet found words for."

This work is part of a partnership with Mind on "Lived Experience Leadership".