The emotional labours of lived experience

As someone who could have a fair amount of my life defined by the trauma I’ve experienced, if I wanted it to be defined that way, I'm not necessarily a fan of having to share that. I’ve become reticent towards revealing the things about myself that I don’t feel that others need to know, to offload the things that prove my worthiness to others by opening up vulnerabilities they shouldn’t have access to. Too often being involved in a piece of work as a public contributor or as a person with lived experience or whichever label fits best means opening up these parts of yourself to validate the space you take up. While others are allowed “a seat at the table” by virtue of their professional qualifications or roles the ‘qualifications’ I hold are generally centred around a laundry list of conditions, performed expertise and the emotional toll of bringing up what others find most relevant about my past today.

So I no longer share all of myself with anyone who feels entitled to ask, it's something I've become quite protective about. I’ve found ways to be protective of myself and I’ve sort of hidden these parts behind many layers of how I choose to interact with involvement and lived experience work. So much of my diagnoses and lived experience, whether deemed relevant or not, is wrapped up in things that are fairly traumatic. So, they're not the things that I happily describe to the stranger on any given weekday during yet another ‘co-production workshop’ (which would more accurately be titled a consultation/focus group than co-production in most cases) when they ask me why I'm in the room. They’re experiences that I drew up without having to label or specify to their most granular minutiae, I think sometimes it's one of those things where I could talk about the things that have gotten me where I am, but I don't necessarily dwell on them. The parts of ourselves that feel foundational don’t need to be dredged up, they can inform us without being called out explicitly.

These foundations, even if I try not to be cognisant of them in every thought form part of everything I do. I can do this without others having to know that I acknowledge them and everything that I do. If I gave every piece of what I thought, felt and experienced up I'm not sure what I would have left. That's one of the real issues that I've found with being a public contributor, we’re expected to mine ourselves for the work of others, to continue burrowing into the things that have been difficult to make ‘new’ things better. Being that person with lived experience, being someone who is involved in yet another project, there isn't always the emotional mopping up to manage and deal with what someone has experienced and what they're sharing at that moment. So instead, I don't give all the details that I used to give. Someone doesn't need to know my diagnosis. What they do need to know are my access needs and they need to know my opinions, my views, and the experience that I’m bringing, they need to know it on my terms. Not on terms that I've come to realise can be exploitative.

There's an emotional labour to digging into these traumatic things time and time again, uncovering them for a fresh audience who then take these parts of you away and hold that part of you with them wherever they go next, able to do with it what they see fit. Something that those who work professionally, who don't lean into their personal lives, don't seem to understand is that when the division between the personal and professional is nothing, not even a blurred line that can make it really difficult to put boundaries. Even when you put these boundaries up they’re generally not the kind that others necessarily respect, if you’re there on unequal terms, to be the '“voice of lived experience” then asserting what you will and will not share can be difficult to uphold. Being given entry to a space through your lived experience does not make your history an open book, in good environments, this is understood and respected, in bad environments, it can be the small cuts made to open you up without even realising. When I speak about the importance of inclusive facilitation and working with empathy it extends to these interactions and how power manifests itself in each interaction or phrase.

So the trauma then gets hidden, the experiences reworded until they’re sanitised and palatable, until they're easily digested for the situation that you're in. It’s not unauthentic to provide a bit of bravado or facade until you feel able to reveal the layered authenticity. If you give all of yourself all at once, there's no way to keep that going. It's unsustainable. It's something I found to be incredibly unsustainable when I've been working previously. I would give so much of myself, reveal the thing that then set ears burning. Then I realised I didn't have to. I didn't have to justify my existence. I didn't have to give the details that prove my point. I just had to say what I wanted to say and how I want to say it. I didn't have to pour open everything. Someone wasn't gonna see again, half an hour from now.

That's the thing. A lot of what we do is asking us to open up the traumatic, to lay ourselves bare, that is something we are able to do, it's just deciding what those terms are. I’m not quite there yet with figuring out my terms of engagement, I know I don’t have to label my specific diagnoses if I don’t want to, I don’t have to talk about the process to get here, I don’t have to be explicit in what I’ve experienced. I can talk with confidence knowing that my place is justified in the space by the space I talk up, not the space I try to fill in other’s expectations.