How we talk: the politics of language in lived experience leadership

The third sector has made significant strides in adapting how individuals and issues are described, but a degree of tokenism remains. Our Leaders with Lived Experience Pilot Programme looks to address this by ensuring people with first-hand experience of social issues take the lead on programme design and decision making. Peter Atherton, lived experience leader and founder of community interest company Community Led Initiatives, helped designed our Lived Experience Pilot programme. He explains the difference this made to his organisation’s funding journey.

Language is a cornerstone of the third sector. Charities, funders and individuals work according to labels and terms that define the work we do and who we do it for. This helps us maintain the awareness and sensitivity needed to avoid hierarchies and a victim-benefactor relationship between different bodies.

However, things are far from perfect, especially when it comes to how we speak about the individuals who make use of the sector’s services.

Blanket terms such as ‘beneficiaries’ create the impression of a single group in need, distinct from those providing services. This creates a barrier to individuals with lived experience being the ones who lead the design and delivery of services and projects.

As Baljeet Sandhu says in her report The Value of Lived Experience in Social Change: “The language used to describe individuals and communities with lived experience can still serve to hold them back and pigeonhole them as ‘victims’ or ‘service users’, rather than drivers of change.” We can see this in action by looking at a term such as ‘co-production’.

As a concept, co-production suggests equity and inclusion. However, how it is used varies. I have been involved in projects involving third-sector and public-sector organisations that were labelled as ‘co-produced’, but (based on Sherry Arnstein’s Ladder of Participation) my involvement in those projects never went beyond the levels of ‘informing’ and ‘consultation’, which Arnstein places in the realm of tokenism.

The language that is evolving around lived experience and its acceptance in the structures that govern society still requires clarity. Labels applied to or adopted by people with lived experience may need to change or be removed. This will help ensure people who are engaged in the system, and have lived experience, are included because of their wisdom and insight - not because their involvement is useful in securing grants.

But, it’s too simplistic to think that changing language alone will have a significant impact on the way society views lived experience. Attitudes that exist within society are deeply rooted. Individuals who have faced social exclusion are often victimised by systems that see such problems as a result of deficits in the individual.

From this perspective, a change in how we talk about lived experience and people with first-hand experience of social issues needs to go hand-in-hand with deeper, more system-level change. In this respect, the Leaders with Lived Experience Pilot Programme is definitely a step in the right direction.

The fact that the programme was shaped through a two-day design residential with lived experience leaders stood as an acknowledgement that The National Lottery Community Fund doesn’t have all the answers, and that, sometimes, knowing what you don’t know is more important than knowing what you do know. The programme team brilliantly created an environment in which participants felt safe to contribute.

It was a tough couple of days, but we all felt that we were meaningfully involved in something important. Among other things, we discussed the importance of language for the programme, and the accessible, inclusive terminology we agreed was reflected throughout the programme documentation.

Once the programme was designed, we experienced the other side as applicants. In this respect, the most refreshing thing was putting together our application knowing we could just be authentic: we didn’t need a bid writer to polish our content. We could just describe what we wanted to do and the difference we felt it could make, without worrying about the language sounding ‘professional’. That removed a lot of pressure for us and levelled the playing field for smaller organisations.

Finally, to make sure that the programme was inclusive from start to finish, lived experience leaders were also included in the decision-making panel, which selected 20 successful applicants from the final shortlist. This level of involvement sits far higher on the Ladder of Participation, reaching the level of delegated power.

Community Led Initiatives was founded by myself and Matthew Kidd, using our experience of addiction, mental ill-health and the prison system. We help others who want to make changes to their lives to feel like they belong in their communities and to achieve their potential through mentoring, group activities, community building and co-production.

We work to remove the barriers to community inclusion for those who face social exclusion because of or alongside complex issues such as drug and alcohol misuse, homelessness, offending and mental ill-health.

The people we work with are often those who sit on the margins of society, but as a sector we need to accept that real, lasting change can only come when society learns to recognise and treat marginalised individuals as equals, in language and in action.

We have a long way to go in this respect, but recognition of the value of lived experience is an important starting point in terms of the third sector serving as an example to society.