Leaders with lived experience: A call for change

Ruth Coustick-Deal

External Affairs Lead

15th April 2019



Leadership in the social sector does not reflect the people it is set up to serve.

Although the social sector exists to stop injustice and do good, it’s denying the people who have direct first-hand experience of social issues the opportunities to solve them.

Last year we worked with 30 people with direct experience of social issues in Bristol and Birmingham to address this injustice in our Leaders with Lived Experience project (LLE), funded by the National Lottery Community Fund and delivered in partnership with The Social Innovation Partnership (TSIP). Building on The value of Lived Experience in Social Change reportby Baljeet Sandhu, we focused on defining the systemic barriers these leaders with lived experience (LLE) face, and on co-designing, with other social purpose organisations, appropriate enabling interventions for LLE to drive positive social change.

The project has helped radically transform our practices as organisations delivering this work, and has been a journey for the LLE involved (see below). Most importantly, it has brought together lived and learnt expertise to create change in the sector. The visual learning report we co-produced with LLE at the end of the programme summarises the lessons that we came to together.

Leanne Gregory (Birmingham) and Steve Hutson (Bristol) are two of the LLE that have been part of this project and co-created this report. Read on to hear about their experience of participating in the project, and working with us to share learning with the sector.

About you…

Leanne: I consider myself an activist and campaigner for social justice. I’ve been doing community work in the area that I grew up in since 2011. I grew up in one of the most ‘disadvantaged’ council estates in South Birmingham (Three Estates Kings Norton). I’m an incredible intelligent person, but the effects of growing up in poverty have hampered my ability to reach my full potential. For me, poverty affects the mind, experience and opportunity.

Steve: I have a wide range of lived experience spanning multiple areas. I have seen social injustices through encountering failed and flawed systems everywhere I looked, and personal hardships including significant health concerns, total family breakdown, criminal activity, homelessness and drugs addiction.  

Having been able to withstand these challenges and in most cases come out stronger, I’m now working to develop new techniques using state-of-the-art technology for young people to build a stronger resilience to, and awareness of, the risks and consequences to the decisions they take.

I have a strong passion for working alongside like-minded people to tackle the burning injustices so deeply embedded within our society and its structures, that should serve us and protect us.

Why did you join the project?

Leanne:  When I saw the advert for the programme (the day before the scheme’s information dinner at the Impact Hub!) I was sooooooo excited! I was like ‘OMG - if I was able to design a programme then this would be it!’ I really wanted to get on it and I was delighted when I did. 

Something inside of me knew that I was about to embark on a really important, life-changing journey - one where I could share my learning and successes being a LLE, and hopefully transform the negative experiences for good. My intuition was spot on!

Steve: On seeing the details of this project it immediately stood out as being something directly suited to me. I was keen to press how strongly I felt that change needed to happen to remove unjust barriers, and to avoid unnecessary hardship. It seemed like this project shared my passion and values and so did the parties involved.

What’s the journey you’ve been on during the project?

Leanne: I feel like I have made some lifelong friends in the cohort, and I have also the opportunity to work alongside people who will continue to be a total inspiration to me (Baljeet, Sade). I have really enjoyed working closely with UnLtd and TSIP - an opportunity someone like me would not normally have if it wasn’t for this programme.

I have had the privilege of continuing to work with UnLtd on the report. I learnt that my experiences were valid and that they were shared by others.

For so long, I felt like I was navigating this alone. This had hampered my ability to grow and develop, and stopped me fulfilling my potential. It felt such a waste. Being part of the programme meant that I was exposed to a wealth of authentic insight, wisdom, support and encouragement - something I desperately lacked. I thrive with no-nonsense, honest, transparent support that is caring and compassionate because it reflects who I am. I received this from being part of the programme.

Steve: It was an intense and evolving ride that felt highly rewarding and further enflamed my passion for tackling social injustice.

From the very outset it was clear I was among a group of peers with intense backgrounds and a shared passion to address social injustices. The personal stories people shared at that first workshop will stick with me for a long time.

As each workshop evolved and content was developed it became clear that we had a group of people joining a fledgling movement that had clear values, goals and ambition. However, it also became apparent that the scale, complexity and embedded nature of the issues we were discussing would require in-depth consideration and strategising.

What was like to work with other LLE?

Leanne: : The research subject had a lot of complexity to it and we were a cohort of complex characters - at (mostly) all times we needed careful, supportive and wise handling to get the best from us!
I think the facilitators were shocked at the breadth of our knowledge and expertise and we quickly became co-designers of the execution of the research. Everyone was on a steep learning curve!

I can’t stress enough how difficult consensus was to achieve in just a few workshops, between 15 LLE who’d never worked together before and 4 unknown facilitators.

One of my memorable moments was when the cohort ran an event with Social Purpose Organisations (SPO’s), and I suddenly realised how far we had all come as a cohort and how much we had changed as individuals.

I was proud of  us. I knew all the individuals had become an “us”, with a common purpose and a common goal - to grow the movement of LLEin Birmingham.

Steve: Clearly when a group of passionate individuals come together this can sometimes lead to heated exchanges. Fortunately, one benefit of our group’s lived experience, is that it comes with a degree of wisdom and a sense of how to agree to disagree and move forward.

This is important because we have a unique opportunity to make great strides in advancing perspectives of lived experience and to champion meaningful change to wherever failed and flawed systems create distress and unnecessary barriers.

What would you say to organisations looking to fund, support or deliver solutions to create positive social change?

Steve: The challenge to change should not be underestimated. When something is embedded in a person or a structure then the strength and commitment required from all parties to overcome it is overwhelming

Something evident from the work we have done so far, and from my own background, is that many people do not like change. They often neglect to acknowledge any failings or flaws at all – despite the evidence. Changing this attitude may be our greatest challenge.

We need everyone to come together with critical thinking, constructive ideas, and a pure heart to acknowledge where systems are failing. We must  acknowledge the pain and distress that can be caused – not only to individuals, but also to organisations, who remain stuck in outdated or out-of-touch routines.

This process of challenge will never end – there can always be found areas where systems can be improved, updated and enhanced.

For me, a core requirement of any organisation is to constantly look at itself, to review the way it functions. This is an attribute I also believe to be good for people to hold, and one I require of myself.

Change shouldn’t be feared but embraced. As LLE we have undergone various forms of change in our own lives – these changes are now having positive impacts on our lives and on the lives of others.

I would urge any and all to join with us. To promote and champion lived experience as the strong force for good it can be. To apply your lived experience so others don’t have to endure the same conditions. And to ensure all unnecessary barriers to the flourishment of individuals and organisations are removed.

Leanne: This was a unique opportunity and I do hope there are many more similar opportunities for people like me to meet people like you.

There is such a power in bringing different people together. If we always do the same thing then we will get the same results.

This programme has proved that doing things differently, and being brave and taking risks really pays off. My hope is that we will nurture and support organisations to work with LLE so that we can make the world a better, fairer place together.

I also hope that other Leaders with lived experience will be inspired by our work and that one day we will have a thriving movement and a legacy that speaks for itself. I’ve had so much fun, and I’m looking forward to more fun in the future. I warmly invite you to join me on this exciting journey.
The learning report we´re thrilled to introduce here lays out who the Leaders with Lived Experience are, what is the injustice we´re addressing together, the key barriers LLE face as a result, and most importantly, what needs to change.

This is only the beginning of our work to collectively tackle this injustice and provide LLE with equal opportunities within our sector.

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