In my previous ‘What do we call them?’ post, I wrote about ‘people we support’ and ‘people who draw on care and support’ – two phrases that are increasingly replacing references to ‘service users’, ‘clients’ and ‘customers’ – and (hopefully) demonstrated how, despite our best intentions, they can still divide and exclude. Still trap us into thinking ‘them’, not us.

‘People with lived experience’ is another such phrase. 

In response to my previous post, Julie Stansfield shared a link to a video of John O’Brien discussing language, in which he talks about how easily words lose their life.

“What happens to lots of those words is they become abstract. They are like a balloon that gets blown up with too much helium and starts to float around and sound funny. So, words like person-centred planning have life in some contexts and in some contexts, they’re just filling out a form. And the more intention, mindfulness, is lost from what we’re doing… the more the word floats away, and then it kind of runs out of steam and it’s like a balloon that collapses and falls back to earth.” John O’Brien [1]

References to, and recognition of, ‘lived experience’ come from a good place. We are increasingly appreciating the wisdom, insight and ideas that direct, personal experience of disability, mental health challenges, ageing, caring, services, systems, prejudice, oppression, discrimination, trauma, exclusion, inclusion brings, in contrast to knowledge or understanding gathered through academia, employment, advocacy and allyship. But too often it feels like the term has become detached. Untethered. That it’s drifted away from an association with rights and reciprocity and representation and become another way of differentiating ‘them’ from us.

‘Lived experience’ is defined as “personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people”. [2] “The things that someone has experienced themselves, especially when these give the person a knowledge or understanding that people who have only heard about such experiences do not have.” [3]

We are all ‘people with lived experience’. The phrase means all of us. But the way we refer to ‘people with lived experience’ exposes how this phrase is fast becoming a label to mean ‘them’. 

Here are just a few things I’ve noticed…

We’ve capitalised the phrase and turned it into a dehumanising acronym:

“The voice and perspective of People With Lived Experience (PWLE) is essential to social work practice.”

“Before their first placement, students may have very limited experience of interacting with a PwLE of social work services.”

We refer to ‘those’:

“Ensuring the voices of those with lived experience are heard.”

“Providing the best care for those with lived experience.”

We mention ‘their’ and ‘our’ – paternalistic references implying and exposing ownership and control:

“People with lived experience and their carers…”

“Thank you to all our people with lived experience.”

We talk about ‘professionals or…’ and ‘professionals and…’, because of course you can’t be both:

“Genuine coproduction should move beyond just consultation to a situation where professionals and people with lived experience work together as equals.” 

We also bizarrely distinguish ‘carers’ from ‘people with lived experience’:

“Whether you are a social care professional or a person with lived experience or a family carer, we want to hear from you.”

“We want to engage with people with lived experience and carers at all levels.”

I’ve also observed how ‘people with lived experience’ is being increasingly used instead of ‘disabled people’ – a shift away from the political heart of the social model and the deliberate use of identity first language to acknowledge oppression and promote social justice and inclusion.

Perhaps most significantly, we often don’t clarify what the ‘lived experience’ is. We just imply that ‘people with lived experience’ are a particular group of people. Them. We don’t recognise that we’re all people with ‘lived experience’ or acknowledge the tautology of the phrase. 

We also get tangled in ‘lived’ and ‘living’. ‘Experience’ and ‘expertise’.

“People with lived and living experiences”. 

“People who have lived experiences”.

“People with lived expertise”.

“People with lived experience and living expertise”.

“People with Lived and Living Experience (LLE)”.

“People with living and lived experience (PWLLE).”

More acronyms. More tautologies.

Even when we do refer to what the experience is, it still gets messy. 

Does “people with lived experience of social work” mean social workers, or people who are or have been supported by a social worker, or both?

Are we suggesting “people with lived or learned experience of social work” are two different groups of people?

Who knows. Maybe another acronym will help!?

“People with lived experience of social work (PWLESW)”

Or maybe adding some deficit-based terminology instead?

“People with lived experience of multiple and complex needs.”

Another increasingly familiar phrase is ‘experts by experience’ – used to describe people who have gained knowledge, insight and ideas through personal experience, and often who are working with (but generally not within) organisations. The term aims to place this experience on an equal footing with ‘professional’ expertise and often replaces other more passive terms like ‘users’.

Again, however, it easily becomes a way of categorising and dividing. 

“They are “experts-by-experience”, not professionals.”

You’re either one or the other – you can’t be both.

Again the phrase attracts some lovely acronyms and exposes our paternalistic thinking.

“Experts by Experience (EbyE) are people with experience of using our services, either as a service user or a carer/advocate.”

“We call people with lived experience of social work and carers Experts by Experience (XbX)”

“Our EbEs are at the heart of what we do.”

And the concept of an ‘expert’ is a tricky one anyway, isn’t it?

Identity is important, and goodness knows we do enough within the world of social care to erode people’s identity as it is. I also fully recognise that many people are proud to identify themselves as a ‘person with lived experience’ or as an ‘expert by experience’ – and likewise as a ‘professional’. I’m not about to tell people how they can identify themselves, although ‘my name is…’ is always great, and may well be enough, especially if we want to connect first as human beings. (In his fabulous book, Maff Potts shares how “a camerado in Norwich called Sam” would “dread the inevitable “round of introductions”” at the start of meetings in the local council where he worked. “So instead of saying his name and his job title – as everybody does – he would say “Hi, I’m Sam and my favourite biscuit is a Hob Nob”. Initial embarrassed silences soon turned to smiles and giggles as further introductions included “biscuit confessions”. Maff writes, “I know it’s daft and it’s a very tiny thing to do but something amazing does come from it. The meeting will be much more effective, people will see each other as humans not job titles and get to a much deeper level of human understanding and it will happen much quicker too.” [4])

Calling out these phrases may seem pedantic, but language shapes the way we think, feel and behave, and I’m concerned that these labels are eroding, not upholding, identity. Defining each of us through a particular lens – ‘professional’ OR ‘person with lived experience’, meaning we don’t see or appreciate or connect with each other as ‘whole people’ with shared as well as diverse experiences. Not helping us all move towards a place where we’re genuinely all recognised as equal human beings with equal rights to equal lives.

This language is generally used in relation to work described as ‘co-production’, and often reflects a tokenistic approach where people are viewed through this single lens. Where we involve engage empower give voice to ‘people with lived experience’, exposing a deep-rooted, paternalistic superiority.

“We empower people with lived experience to use their own voice.”

Where ‘involvement’ verges on exploitation, as people are repeatedly asked to share personal, painful, powerful ‘lived experiences’ – but not their knowledge, skills, and ideas. And often with no payment. No support. No influence. No power.

And where we view ‘people with lived experience’ as a blanket group – seeking to involve ‘one of them’, regardless of what their experience is, and often at the expense of the people with more direct, relevant experience and ideas. 

(While we’re here, just a note about ‘the usual suspects’ – a term that really makes me go hmmm… People who hold far more organisational memory, wisdom and insight and have far more local knowledge, connections and influence than senior leaders who flit through strategic posts are casually, callously dismissed by this term that is never, ever applied to the chief execs and directors and managers who sit in every meeting and make every significant decision.)

I’m a mum, and so I guess you could say I have ‘lived experience of childbirth’. If my local hospital wanted to improve the experience of childbirth in their maternity unit, they might invite me to be ‘involved’ and to share my experience, but I chose to have both my kids at home. I might be able to share some thoughts on potential improvements, but I wouldn’t have any direct experience of hospital birth to draw on. If my local midwives wanted to promote and develop their approach to homebirth, I’d be more than willing to talk about my fabulous experience, but I’d just be representing myself and my personal experience. I wouldn’t be speaking on behalf of, or as the voice of, people who have home births. I wouldn’t consider myself to be an ‘expert’. I’d just know, and share, how things were for me.

We’re very easily drawn into thinking that people with shared experiences all share the same experience. People are recruited as Lived Experience Practitioners (LXPs)’ or ‘Expert by Experience Leaders (EbELs)’ (argh, acronyms!) to “represent the voice of lived experience” and “represent the needs of a diverse range of people with lived experience, including different cultural backgrounds and ethnicity”, with the “ability to represent a range of communities not just your own”.

I don’t want it to sound like I’m dismissing the value of the insight and expertise gained from people’s everyday realities. Far from it. But every one of us experiences the world in a different way, and too often we ignore intersectionality and any intentions around inclusion easily do more to exclude. We’re working so hard to create these ‘special’ roles instead of working to improve the overall diversity of our organisations. To make recruitment processes and job roles more accessible. To breakdown out-dated hierarchies and to redistribute power. To connect and collaborate on the streets in the ‘range of communities’ instead of inviting a sole ‘representative’ from ‘the community’ to our table. And to create spaces and places where we recognise that everyone brings their own unique experience, and that all experience is valid. 

It’s not a competition. 

And it’s also not ok for conversations, decisions and plans to exclude the person or people directly impacted, who know what it feels like to be frustrated scared confused trapped lost blamed dismissed ignored overwhelmed exhausted elated seen heard valued by, and within, the systems and structures and support we’re all aiming to dismantle or to build.

My concern, I guess, is that our attempts to co-produce, and indeed to co-exist, are still dominated by segmentation and classification, and while this might be a natural human trait, it brings with it assumptions and judgements that so easily get in the way of genuine listening, connection, trust, empathy and solidarity. That divide when we need to unite. That prevent consensus and shared ambition, and any kind of valuable, lasting change. 

My concern, I guess, is that in our attempts to find the perfect label, too often we forget that there’s already one label we all share.

Human.

Let’s start there.

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References

[1] Personhood and Members of Each Other – John O’Brien (Video), Neighbours International, YouTube, 3 March 2024

[2] Lived experience, Oxford Reference

[3] Lived experience, Cambridge Dictionary

[4] Friends and purpose, Maff Potts, Gometra Press, 2025