Learning from community organising and co-production: Sharing your story to make change
This is the start of a mini blog series where I will reflect on how community organising and co-production can work well together, and what learning can be shared across the two practices. I work on two different pieces of co-production work at Grapevine: In one role I facilitate co-production around learning disability and autism for Coventry and Warwickshire’s Integrated Care System, and in the other I use community organising methods to co-produce mental health services at Coventry Warwickshire Partnership Trust. While it can be challenging to sit across two different pieces of co-production work that look at different themes, are commissioned in different ways, and use different methods, I do love that I can constantly learn and reflect on how each piece of work could teach me something about the other. At first, I didn’t see how community organising and co-production, two established methods for achieving change, could be compatible. I thought they may confuse, rather than complement each other. Throughout the work I’ve come to realise that the two methods work well together and that they share many of the same bases — storytelling, an understanding of power, relationship centred practice, strategic planning for change, and more. This mini blog series aims to share some of my learning, and build an understanding of what it takes to co-produce really well.
Firstly, I’d like to explore the power of telling a story to make change. In both community organising and co-production, stories of our lived experience are shared in order to move someone to action, and to move us closer to the change we want to see. Our stories are powerful, they are the motivating force behind change. We can read a list of facts and figures, and understand why we need to make change, but it isn’t until we hear someone’s personal story that we are actually moved to make that change. For example, the facts and figures around the 4 year waiting lists for autism and ADHD assessments are well known, but it is not until people hear the experience and challenges of someone on that waiting list that services feel moved to actually act. When someone shares their story, we connect with them on a personal level, and feel empathy for them and their experiences.
Unfortunately, there is a lot of bad practice out there when it comes to sharing a personal story in co-production. Too many people with lived experience of accessing services are called upon to share their deepest darkest trauma in a way that is exploitative and not trauma informed. Without the right support, without a clear call to action, and without sharing power in the system, storytelling can be exploitative rather than empowering. Not only does this not have the desired impact, but it can re-traumatise the person sharing, and be a step backwards in their journey.
Public narrative in community organising is a structured way of telling your story that has a clear challenge, choice, and outcome, ending with a call to action. I have learnt that this method can be used effectively in co-production to move commissioners, NHS service leads, and local authority policy makers to make change in services. I have worked with many people with lived experience on how to structure their story, and when they distil it down to challenges they faced, the choices that would have improved these, and what the outcomes were, they can clearly communicate the changes they would like to see in services. Using organising methodology to co-produce in this way is powerful, it motivates people to act, and it holds people accountable.
I would like to share some good practice I have learnt from organising and co-production on telling your story in a way that powerfully makes change, while supporting the individual. I have summarised these into 5 key questions:
- Is it the right time?
‘Share from the scar, not the wound’. Take time to heal before sharing your story with others, so you are able to use your story to make change, rather than reliving your trauma in a harmful way.
2. What is your intention in sharing your story?
If your intention is to make a complaint, get someone fired, or share grievances, this isn’t the right time for you. If your intention is to make change, see improvement, and for professionals to learn from your experiences — you are ready to start crafting your story.
3. What change do you want to come from sharing your story?
Think about what change you want to see in services or systems, and think about how that change could have resulted in different outcomes in your journey. Craft your story in a way that shows the importance of that change.
4. What are you happy to share, what moments do you want to keep private?
Map out a timeline of your life, highlighting important moments and key turning points in your health or care journey. Go back through with a red pen and cross out the moments that are personal and private. You don’t have to mine your deepest traumas for your story to have impact.
5. How will you take care of yourself before and after sharing your story?
Block out some selfcare time around your story, reach out to your support networks, and take the time to reflect.
Using lived experience to make change is hard. It can feel heavy when the change we want to see is so close to the bone, but there is a way to tell your story in a way that is powerful and leads to change.
I hope you’ve enjoyed reading my first blog on the lessons learnt from community organising and co-production — next time I’ll be writing about power.
