Publications

I wear my lived experience as a badge of honour

By

Katy, Peer Programme Lead at Fulfilling Lives LSL

Fulfilling Lives Lambeth, Southwark and Lewisham is funded by The National Lottery Community Fund and is part of the National Fulfilling Lives Programme focusing on multiple disadvantage. The Community Team was created to make sure we have lived experience at all levels of the programme influencing all the work that we do. I have the amazing job of leading the Community Team.

The whole team bring unique perspectives into the programme but one of my team members and I have significantly differing opinions on lived experience. We both have it (by the bucketful) but feel differently about how much of a role it should continue to have in our work and in our lives.

I feel that my years using drugs and alcohol, homelessness and the chaos that followed, continues to influence most parts my life. My career choices, how I raise my children, the friends I have chosen, and how I view the world. While he feels like it does not define him at all, and neither does he want it to.  

Where I wear my experiences with a badge of honour (I survived ffs!), for him his experiences are events and choices in his life that took him off course. He is ready to leave them behind and focus on his future. 

So, who’s got it right? What I am learning is that it’s neither of us and it’s both of us. How we view our lives, and our futures is completely unique and personal to us. Everyone with lived experience is on their own journey and must do what is right for them. There should be no expectations. What is clear from the dissonance in our views is that one person with lived experience does not reflect the thoughts and feelings of all, an assumption we should avoid (you know what they say about assumptions!). I do stand by my belief however, that those of us with lived experience are walking, talking proof that change is possible. I feel that those of us who have got out, moved on, found recovery, however you choose to describe it, have a duty to show others that, however bad things get, there’s hope, life can get better, you can find a level of peace, and stability, and even contentment and joy.

But maybe our responsibility is also about using our knowledge to create opportunities for people still very much in the middle of their experience, to be heard and influence change. As my colleague says, “We’re sat at the table, some people are not even in the house”. That’s a privileged position to be in, we mustn’t waste it.

One thing we agree on is that when involving lived experience – either in consultation or co-creation – you need a range of perspectives of those still living their experiences. So perhaps it’s time for me to quieten my lived experience voice and give other voices the chance to speak. To ask myself ‘How can I use the opportunities I have, to open doors for those with living experience so they can influence the things that are important to them?’ or ‘What more can I do to set a place at the table for those waiting to get in the house?’

My colleague and I may continue to have differing opinions on lived experience, but that’s part of what makes our relationship so great. I respect the journey he has been on and the choices he makes, and after reading this back I can see that he subtly influences me every day, which I’m sure will please him greatly!

Read more about coproduction here: