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How "Lived Experience" fails lived experience

I find myself feeling quite uncomfortable about the way many of the discussions about ‘lived experience’ are playing out these days. To be clear, I think that valuing people’s experiences and using this to shape up the way in which we provide help and support is vital. I just can’t shake this nagging feeling that we’re doing it really, really badly. Here are a few of my thoughts:

We’re making people’s ‘lived experience’ their identity

By labelling someone a ‘person with lived experience’, we’re making the fact they have had mental health issues or misused substances or been homeless etc the most important fact about them.

They may be a brilliant musician, a genius at project management, a person of deep faith, a reflective thinker, honest to a fault, kind to children and small animals, but we reduce them to ‘having lived experience of homelessness.’ We talk about taking a ‘whole person approach’, but then define people according to our pre-existing professional categories (side note: if you’d like to read a lot more about this, check out our ‘People @ the heart’ report).

It’s also remarkable to see how we lump together a whole range of disparate experiences under this single umbrella term ‘lived experience.’ We do the same thing when we talk about ‘BAME’ communities, as though Black communities are the same as Asian communities, which are the same as ‘minority ethnic’ communities. Or even that the term ‘Black communities’ (or Asian, or ‘minority ethnic’ singularly represents anything other than an enormous diversity of culture and cultural experience. The fact we do this suggests we’re not genuinely valuing the individual experiences as distinct and important things in themselves.

I’m not arguing for more specific labels. I’m arguing that the use of reductive labels like this might be helpful for our professional concerns of categorisation but it damages people - and our willingness to homogenise just shows how lost we really are.

We’re reinforcing the damaging distinction between ‘the helper’ and ‘the helped’

We mustn’t overlook that progress has been made. We have shifted from ‘patient’ to ‘service user’ to ‘lived experience’ (though these earlier terms are definitely still in common use) and this does show that we are trying to get better.

Nonetheless, by defining people in terms of their experience, we continue to reinforce a damaging Us-and-Them dichotomy. You have ‘lived experience’ (i.e. you’re broken). I am a professional (i.e. I can fix you). The truth us we all have lived experience of a range of issues. I have struggled with my mental health. I have experienced the anxiety of thinking I’m not going to be able to pay the rent. The fact that none of our forums or processes invite me to ever reveal or speak about these parts of my life bely the problem. I am a ‘professional’, an ‘expert’, so my lived experience is not needed.

Until we allow ourselves and each other to enter spaces simply as human beings trying to do good, rather than as This Title from This Organisation, we will continue to accidentally ‘other’ people with lived experience. If we genuinely want to treat others as whole people, we have to begin by surrendering our own status. There is a damaging power imbalance at play here that we need to begin to dismantle.

We continue to try to force ‘experience’ into our ‘expertise’-shaped models.

If you’ve read this far, it will probably come as no surprise to you to hear that I don’t like the term ‘experts by experience.’ It’s a term that seeks to force people’s experiences into a framework that only truly values expertise. Expertise and experience are different things. A mental illness specialist has knowledge that is fundamentally different from a mental illness sufferer. Both are valuable – but they are differently valuable.

Many people with lived experience value being referred to as ‘experts by experience’ and find its effect empowering. I think it is vital to keep that empowerment, but to find a way to do it that genuinely values lived experience on its own terms.

By trying to shoehorn experience into an expertise, we damage the very nature of experience. We invite a small group of people with lived experience to form a panel, then we roll out this panel again and again to consult on measure after measure, decision after decision, as though they were the voice of all lived experience. We know that no individual’s lived experience can or should be generalised. We know that two people’s experiences of the same issue could be incredibly different which is why we need to hear from lots of people with lived experience, and not just the same few over and over. Why do we keep doing this? Because we’re trying to force experience into an expertise-shaped model instead of building a new model that actually values both.

So what? I’m not going to pretend I have the answers. What I have is a few thoughts:

  • We mustn’t simply keep inviting people with lived experience into ‘our’ professional, expertise-centric spaces and claiming we’re ‘doing co-production.’ I’ve done it myself, and it’s left a bitter taste in my mouth.

  • We need to build new shared spaces. We have to shift the balance of power away from the professional and back to the citizen, letting each individual set the terms and boundaries of their own engagement.

  • We need to design a new system from the ground up that is capable of valuing both experience and expertise – while treating them as different – and blending the two.

  • We need to work in a way that is bespoke to each individual by design. If we are to truly value lived experience, we need to recognise that every individual’s experience is unique, and we need to reinvent our systems around that fact. This means we have to get past our unhelpful drive to industrialise and ‘scale up’ everything.

People are not repeatable, replaceable, homogenous entities and nor is their experience. We must stop treating them as though they are.

With thanks to Meg Haskins, Catherine Scott, and Lucy Zwolinska for their invaluable input to an earlier version of this article.

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