Adeela Warley: A commitment to lived experience must be more than a communications endeavour

Meaningful debate about the ways we work with and portray our beneficiaries and our causes is vital

It’s rare for charities to go public with commentary that questions the work of other charities. But that’s what happened when Alzheimer Scotland queried Alzheimer’s Research UK’s recent advertising campaign

The exchange identified the risk of “perpetuating dated stereotypes” and the need to create urgent appeals that “portray the harsh realities of a cause… while leaving space for hope”

Notably, both charities cited the importance of putting people with lived experience at the heart of the work, and yet this led them to differing viewpoints on how to communicate about the experiences of their beneficiaries. 

This public discourse on the matter prompted a wider debate in the sector about how to represent lived experience in communications. 

Charities have long understood the power of people-led stories to create change, develop public understanding and garner supporters. 

But there is a danger that lived experience can be misused, veering into tokenistic and exploitative outcomes that further entrench damaging stereotypes and inequalities – think white saviour narratives, for example.

A commitment to lived experience must be much more than a communications endeavour; it must be aligned with charitable purpose, values and culture. On a recent Charity Chat podcast, Charlotte Lamb, principal for involvement and decision-making at the think tank NPC, talked about charities using lived experience as a guiding force to define not just what the charity does but how it does it.

NPC is developing a guide, with a useful framework, which shares the knowledge and experience in the sector. 

The reflection I’m taking away from Charlotte’s conversation is that every charity needs to go on its own journey, including people with lived experience from the outset.

This is a thread that CharityComms members have explored, from how you work with storytellers to enable authenticity, to examples of how charities embed lived experience into their outputs.  

In Third Sector’s recent piece by Kellie Ziemba, chief executive of the charity Kairos Women Working Together, she shared her personal journey towards using her “lived experience voice” to influence positive change for marginalised, abused and exploited women.

Ziemba has created a culture where lived experience is truly welcomed and valued. From changing recruitment practices to be more open and inclusive of women who may not have the education or work experience typically required for the role to heavily investing in staff wellbeing.

But being a champion doesn’t necessarily require you to have lived experience. For example, Tim Naor Hilton, who, on taking the role of chief executive of Refugee Action in 2021, highlighted “a commitment to… shifting power to people with lived experience” through developing better opportunities at Refugee Action and influencing the wider sector. 

Adopting a strategic and systemic approach to lived experience, rooted in a deep understanding of what constitutes it, can help charities build emotional resonance, credibility, trust and impact. It is also the foundation for authentic and powerful communications: by centring lived experiences from the inside-out. 

For the individuals themselves, it can boost confidence, open up new opportunities and create a sense of genuine agency.

It is vital that we continue to have meaningful debates about the way we work with and portray our beneficiaries and our causes to develop our practice – this is our responsibility as charities. 

I welcomed the thoughtful challenge and response from both Alzheimer’s charities, which created space for reflection and learning as a sector.  

Adeela Warley is chief executive of CharityComms

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