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A STORY OF LIVED EXPERIENCE

May 29, 2019

Just recently, I fell running in the Pentlands and badly fractured my shoulder. Split second inattention has led to considerable pain, months of rehabilitation and some enforced time off. The ensuing recovery period has taught me many things, not least that I hope I will never take for granted again being able to drive,  open a yoghurt pot, do up my trousers’ button or even hold a book to read. It has also demonstrated what I have long suspected - that  family sympathy does not last long and that the novelty of caring for the carer (particularly when you have 3 teenagers) runs out before the need for the caring.

 

I have vowed to myself not to forget this “lived experience” of being partially - and temporarily - disabled and to instead learn to appreciate the advantages that being able bodied brings. But the thing is, I know I will forget. For this is not the first bone I broken but the 15th. My talent for being careless is almost unparalleled.  It seems that I have learned nothing from my own stories about what breaking a limb means. However, it has reminded me once more of the power stories have when they are told by people who have a real and deep experience that they can share with others. How can we work more effectively to ensure that these stories are not only heard but learnt from so we do not trip ourselves up in future?

 

There is quite rightly an increasing demand for people who have “lived in” experience of an issue to share their stories of what impact that can have. The media have long sought out the “insider” story, sometimes for dubious purposes. Funders are increasingly requiring lived experience affirmation of the good organisations are actually doing. Policy bodies and consultations such as the Care Review purposely place lived experience at the heart of their deliberations. But for every good example of how this knowledge is being used to inform policy, develop practice and innovate workable solutions, there are also toe curling examples of people being used for little more than “pity porn”; where people are treated as “case studies” rather than unique individuals and folk feel pressurised to make their story fit the agenda rather than the facts.

 

Life stories are the containers within which we often place our greatest fears, our biggest passions, our scariest moments, our deepest regrets and our secret ambitions. For individuals, it can be empowering and affirmational to be able to use your personal reflections from your own experience in a way that not only changes your life but the lives of those you love and fabric of our society for the better. However, individuals need to be conscious of their own instincts of when, where and what is right and good for them and others to share about the history of their lives.  Once told, a story takes a life of its own - it is in public ownership which others can retell in their own way and from their own perspective.  You need to be sufficiently confident that you are comfortable with you, your family, your friends , reading this story in all its versions online in years to come. Experience has shown that if you are clear and comfortable about why you are sharing your story, the rest often falls into place.

 

And this is where organisations need to be cognisant of their own role in working with people's  stories. They need to be clear why they are asking people to share something precious of themselves and to be prepared to refrain from sharing if the purpose is not right for them or individual. In my opinion, they need to be prepared to be led by the individual rather than their key messages, their fundraising needs or their funder requirements. It is a hard line to walk to ensure the balance of respect for the individual with the wider needs of the community and there are no hard and fast rules as to what is right or wrong.

 

Indeed, not only are there no rules, there is very little guidance about what may or may not be advisable. There is, however, considerable lived experience within the third sector about how, when and where personal knowledge, experience and insight can be used well for everyone involved.  The issue that faces us is how often we share that experience and learn from each other’s cross sector insights. The answer is of course sometimes but never enough.

 

We know that by sharing stories we can also see our own practice and priorities in a more informed light. Conferences, events and social media all help but it is vital to ensure that the right people are involved in the story exchange in the first place. To what extent do you actively seek advice and not just stories from those whose experience you utilise for good? How often do you ask folk “what story do you want to share?” rather than “please tell me the story I need to hear”? How prepared are you to change your narrative when you have seen it through other peoples’ eyes?

 

Once you start engaging with other people’s stories, we have to be prepared to grapple with the richness and variety of experiences that are offered. No one person’s story is the same as another's. My story of temporarily living without the use of one arm will never equip me to know the story of another person's more permanent experience. However, it may allow me to connect in a more meaningful way with others. And it is that vital human connection that stories bring us. By seeing, seeking and sharing the similarities - and the differences - that we have with each other, we will help ensure that we can build a community and maybe even a society  in which we are able to learn that our shared story can and will be changed. That’s a lived experience that I want to be part of.  What about you?

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