Our seventh in a short series of blogs and vlogs exploring what “lived experience leadership” means to us.
Past and current experiences demonstrate that there is a tussle that coexists between Lived Experience Practitioners (LXPs) and those in leadership positions. A poignant tale that demonstrates just what I mean is in relation to my first ‘mental health’ related admission. It was brief, however extremely impactful.
The events that came before consisted of a dispute between myself and my mother. Due to us being unable to reach a level ground that had civility at its base, I knew the best way forward was for me to find my own accommodation. I had to try something new to attain different results.
On the day I had secured a room I was expecting the assistance of close relatives to help me with the move. This had all been pre-agreed however when I was calling there was no response from either of the two men from my family. Already in an emotionally fragile position, my anxiety and fears began to excel to an unprecedented rate. I had to go back to the place I was trying to get away from, ‘home’. From the pit of my stomach I already anticipated a battle of some sort was to come.
It was this anticipation that allowed me to believe that the biggest ‘gang’, one that professes to have the ethos of protecting and serving the general public, would be able to assist: The police. This was a fundamental error on my part to assume such a thing. I called them prior to me going ‘home’ to let them know that it was very likely that I would need assistance to obtain my belongings. The reason being because my mother and I had reached a tumultuous point of no return.
I arrived a little before the police did. As I predicted there was a volcanic verbal exchange between my mother and I. At the peak of this exchange is when a police officer arrived. It was a white male police officer. He listened to what was being exchanged for a short period then, took my mother and my cousin to one side. I couldn’t believe my mother stated false information in order to take the spotlight off her own unjust actions. She expressed that she hadn’t seen me all day and I had been smoking weed.
He twisted both arms up against the shoulder blades of my back and proceeded to put handcuffs on me. Way too tight at that. I screamed in pain at the action. I had done nothing to warrant this response. Yes, my tone of voice could have been considered to be significantly increased. To slap these chains on me for false accusations without any way of confirming the truth has always stuck with me. I do not recall anyone asking me for my side of the event.
This was my first taste of how those in a position of power, even considered to be leaders of sorts, were clashing with me over my disposition. One that was created under the duress. This particular instance illuminated that there are people that occupy positions of power that shouldn’t be, especially where mental health is concerned, empathy and compassion should exist too.
A couple of years down the line I had reached an unexpected place of peace. I consider my recovery to be an ongoing process, akin to the moving cog pieces inside a watch; if any of the moving parts stop, it affects the overall function. The three main cogs within me are a healthy diet, regular exercise and engaging with creative exploits that allow me to express myself.
Part of the ‘regular exercise’ element is not only the physical kind but also that of the mind. The brain itself is a muscle and needs to be stretched and maintained like any other part of the body. Peer Support in a sense is like this for me. Being that empathetic ear for others going through similar turmoil and utilising my personal experiences to encourage others to open up, allows my brain to be expansive in the different ways I can approach interacting with different people.
The most successful part of my work as a Peer Support Worker (PSW) thus far is the group co-facilitation that I do alongside clinicians, who to a certain degree can be classed as being in senior positions to myself and other PSWs.
Every fortnight, for one of my co-facilitated groups, myself and a member of the clinician team at EQUIP join forces to create a safe, non-judgemental space for its users. The digital space we create every fortnight is a Hearing Voices group where no topic or concern is off limits.
My co-facilitators, the clinicians, nurses and I have received the same training, at the same time. We have our individual areas of expertise however we do not experience clashes of any kind. I cannot think of an instance related to the running of this group that has made me appreciate and respect that their knowledge fills in the gaps where mine does not and I believe this is felt vice versa.
What I truly believe in regards to my experience of leadership clashing with my work as a PSW? One cannot exist without the other. Because of this fact we need to find ways to work together more cohesively. Before this occurs, a necessary characteristic for both parties needs to be mutual respect. How do we go about culminating this? That I profess I do not have a response to. A starting point may be to blindly, as we do in my co-facilitated group, respect others irrespective of what it is they do. That is until a reason for otherwise crops up and then this needs to be re-evaluated! I commonly hear in general day to day that respect should be ‘earned’. This takes time and I believe that time is of the essence. Why not just jump into moving forwards together now via the route of respect?
Another point in terms of what isn’t working currently is that there are some people in positions of power within mental health because they simply enjoy wielding control over others. Bound to be expected in any profession however, we are talking about mental health: health is so invaluable and precious. We need better vetting of some of these ‘leaders’ that are decision makers in this realm. There is no room for error, be it unconscious or conscious biases.
A clear plausible solution is to employ LXPs in leadership roles however, these seem very few in existence. In relation to Peer Support, the two leadership roles I have unearthed are Senior Peer Support and Peer Support Coordinator roles. One could end up assuming that LXPs, Peer Support Workers are not necessarily welcomed into leadership roles. Or, perhaps as the positive potency of the benefits of Peer Support sink in, it may take time for a broader array of positions to come into existence.
I am hopeful that with a union based on positively impacting the mental health landscape, the two can coexist in harmony. Co-facilitation between clinicians and LXPs exists. Without a doubt what is needed is a transparent and open conversation between these leaders and LXPs to come together in finding plausible ways we can move forward together. In order for this to happen we all need to express with frank transparency HOW we can make this union work so those we collectively work with can benefit.
Have something to say about this thing called ‘lived experience leadership’? Get in touch with us about writing a blog or filming a vlog by emailing amy.wells@nsun.org.uk.
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”.