How do we ensure people with first-hand lived experience of social issues are in leadership positions?

The civil society sector is broadly aligned on the importance of lived experience. In practice, however, the focus is mostly on sharing stories of negative experiences in order to generate sympathy and outline the specifics of social issues, with key decisions and leadership reserved for ‘professionals’. Our Leaders with Lived Experience Pilot Programme seeks to address this imbalance. Temoor Iqbal, Content Officer at The National Lottery Community Fund, explains the programme, its challenges and what we could all learn from it.

“Does anybody here have any lived experience?” asked the chair of a recent panel discussion on homelessness, inviting anyone in the room to share their personal story of life on the street.

The event was taking place in a city regularly highlighted as one of the UK’s homelessness hotspots. The audience included staff and clients from various local charities that work to address homelessness, rough sleeping and poverty.

While it wasn’t asked with any malice, the question revealed something about how the civil society sector as a whole views lived experience: people’s first-hand stories are used as reference points by well-intentioned individuals to define issues they want to address.

Treating lived experience as narrative fuel for social change might well be effective in capturing the attention of the wider public, but it has the simultaneous effect of marginalising and pigeonholing the very voices that provide that fuel.

In her report The Value of Lived Experience in Social Change, human rights lawyer Baljeet Sandhu states: “The sector understands that lived experience is important. But even when action is taken, people with lived experience are often viewed more as ‘informants’ than change-makers and leaders of change.”

In response to this state of affairs, in February this year we launched our Leaders with Lived Experience funding programme aimed at organisations set up or run by people with relevant lived experience of the social issues they look to address.

As well as awarding grants, the programme aims to explore how the sector as a whole can better support lived experience leadership, in line with The National Lottery Community Fund’s Strategy for Supporting Civil Society.

A core component of the strategy is to empower communities by involving people with first-hand experience in decision making and creating opportunities for them to use their experience to create change.

However, in designing the programme, we faced a problem: if the grant-making sector is currently failing to value people with lived experience as leaders of change, what difference could a National Lottery-funded programme make?

To avoid simply repeating the pattern, we needed to ensure that we not only gave awards to organisations that were run or founded by lived experience leaders, but that the programme itself was designed by them.

We started by asking a number of lived experience leaders to tell us about the barriers they faced, the factors that enabled them to have an impact, and what they envisaged an ideal funding situation to look like.

This engagement highlighted some unexpected areas in which funding programmes in general often limit lived experience leadership, for example by valuing professional experience above lived experience, failing to give lived experience leaders actual decision-making power, and focusing too much on the narrative of negative experiences.

This latter point, as mentioned earlier, is what leads to the narrow definition of people with lived experience as ‘service users’ or, as Sandhu puts it, “as ‘informants’ [rather] than change-makers and leaders of change”.

These findings formed the basis of a design residential, in which 17 lived experience leaders from across the UK, from a variety of different backgrounds and sectors, came together to agree the key aspects of our lived experience programme.

We discussed everything from the programme’s aims, priorities, criteria and eligibility, to the application process and how decisions would be made, ensuring that every element was shaped by lived experience leaders in a way that suited their needs.

Suggestions, all of which were incorporated into the final programme, included video applications for those who disliked written forms, a short application form with as few questions as possible, and no requirement for people to recount their trauma in order to legitimise their position.

While the design residential might not sound like a radical idea, the approach was completely new to everyone involved, and the response was overwhelming.

The programme received over 650 applications, in spite of minimal promotion or advertising, with 70% of the applications coming in the final four days before the deadline. This was, in part, a reflection of the wide word-of-mouth reach the programme received through well-networked lived experience leaders.

Applications covered a range of issues, from Muslim women’s rights and disability, to substance misuse and sexual abuse, highlighting the need for support of this nature across the entire civil society sector.

Ultimately, what we’ve learned from the programme’s design and application process was neither complicated, nor unexpected. Leaders simply asked us to respect and value their lived experience, not reduce it to a supporting role in a wider narrative, and to allow them the opportunity to influence change on their terms.

The fact that the sector has been failing on these counts should serve as a reminder that unhelpful approaches to funding can come out of the best intentions; even when we feel we’re doing things right, we must constantly refer to alternative perspectives and question our assumptions. Only by doing this will we move from panel chairs calling for tales of lived experience, to giving the chair to lived experience leaders themselves to lead the future of social change.

Coming soon: Rhiannon Griffiths, lived experience leader and Managing Director of Comics Youth, on power dynamics within the civil society sector.