What does ‘lived experience’ really mean? Fair By Design’s Advisory Panels tell us
This blog was initially posted on the Fair By Design website
Most sectors are filled with jargon. The consumer protection and anti-poverty spaces are no different. At Fair By Design, we rely on a glossary of terms that make complete sense to us but might seem very alien to others. Terms like inclusive design and financial inclusion mean different things to different people, and none more so than when it comes to ‘lived experience’, a term we use often, but which can mean different things to different people.
One of our core goals at Fair By Design is for our work to be shaped and informed by those who experience the poverty premium. To us, this means people who experience the poverty premium are part of our decision-making and at the heart of what we do.
With this in mind, this year we have worked with The Poverty Alliance to establish a Lived Experience Advisory Panel. The panel is made up of a diverse group of 15 people from across Great Britain.
In a recent session with the panel, we wanted to understand whether terms such as ‘lived experience’ and ‘expert by experience’ resonate with them? This blog is a summation of the key themes from that session and a further blog-writing session with four members of the panel, quotes from the panel are featured throughout the blog.
No one term is perfect for everyone
Perhaps unsurprisingly, when we spoke to the panel, the key theme from our discussion was that no one term is perfect for everyone. Many people were happy with the terms lived experience or expert by experience. These terms were seen as interchangeable, positive and as respectful to those involved.
Crucially some panel members highlighted that not only do they have lived experience of poverty themselves, but they also have experience of helping others in their community, both informally and through their employment e.g. as a social worker.
“Having first hand experience of the issue or the system in terms of how we can change it for the better is important. It is almost about being qualified enough to speak about the issue and the problem because we have that first hand experience. Creating a solution for a problem can only happen if the people it intends to serve are the wheel that turns it.”
However the term was not perfect for all, one particular moment of reflection for us was when one of the panel members said that they did not mind the term, but it can also feel painful, like a kind of mockery, when the system puts you in a disadvantaged position and then asks you how it feels to live through that experience.
Others felt that it diminished their role in campaigning against poverty, they had more to offer than just their experience and preferred to be called anti-poverty campaigners.
“It means being able to shape future policy and law with our input to the powers that be, whereas before our input wasn’t really considered. That’s what it means to me, my opportunity to talk about how and where policies, procedures and law can be improved because of my experience.”
Several people preferred the term ‘panel member’ as it does not divulge too much about what they are going through and has a sense of equality across everyone working in the sector. We are all working together to create change so we should use terms and structures that give our contributions equal standing.
“When I use the term lived experience sometimes, I feel like I owe it to people to explain my suffering or trauma and I guess it gives people permission to ask questions about my own experience that I haven’t necessarily given consent to. If I say panel member, I can choose to divulge however much I want.”
Lived experience is more about the way you do it
Interestingly, all participants emphasised that good lived experience contribution wasn’t just about the right terms and much more about creating a space for people to share their experiences.
For one panel member, lived experience was her opportunity to get her voice heard and feel safe within the structure of the group. Part of that experience was belonging to a diverse community, where differences in faith, colour, and lifestyle were respected. She described the work as cathartic, not just because it allowed her to speak, but because it challenged the systems that create these circumstances in the first place.
“Four things spring to mind when working in the group, nourishing, cathartic, meaningful and transformative. Those are the four words I think of when we do group work.”
The feeling was that lived experience work should be an opportunity to create safe spaces, where people feel respected, and their beliefs and feelings are heard. People told us that sharing can be therapeutic and an opportunity for individuals to not feel alone. For this group of people, the way of doing lived experience needed to be one that respected them and their lives.
Finally, it was clear that the system has placed people in a situation where they are in poverty, but this is not their only, or even their main, identity: The panel are teachers, mothers and friends first.
In addition to this, many people on the panel haven’t always experienced poverty, life events led to them becoming financially vulnerable, but this isn’t a fixed identity.
Others said that they were in full time work, but the conventional view of their role in the group could mean people assumed they weren’t working at all, lapsing into a lazy stereotype around people in poverty.
This is always going to be something we revisit
This conversation made clear that this cannot become a ‘box ticking’ exercise and that successfully incorporating lived experience into policy design and campaigning means creating opportunities to have ongoing conversations.
What feels right for panel members in their lives today may feel different tomorrow and next year. This is especially true as we work through a journey with people of telling their stories and experiences.
Through capacity building sessions put on by Poverty Alliance, supporting them with media training and understanding the parliamentary process, they can be changemakers outside of the group. They may join the panel as a lived experience panel member but could leave it as an anti-poverty campaigner, who does not only share their experience but also shape policies as their expertise evolves.
As one of our panel members said: “I want to keep revisiting these terms to re-evaluate what we’re looking at and making sure voices are only not just included but actively listened to and boundaries are respected, that this work doesn’t expose trauma without care and support. It is about making sure lived experience is recognised not just as through the “sharing a story,” but as a form of expertise that can change systems.”
Conclusion
The session reminded us that we shouldn’t look to fix our language. For our panel, lived experience isn’t just a term, it is about feeling respected and part of meaningful policy changes. It is clear that lived experience encompasses so much more than language, it is about an approach that values people’s time, experiences and allows them to be heard. We will keep revisiting these conversations because the words we use are important and should continue to reflect the people behind them.
“Working in the group feels collaborative, it feels like a weaving together of different people’s realities, but that helps us to think deeply and respect each other’s truths. It feels to me personally validating that to know my experiences are not just being politely heard but being genuinely valued as part of something bigger.” Fair By Design Lived Experience Panel Member.
