We need to talk about “lived experience”

| Isaac Samuels

At Ideas Alliance, we are always championing the value of lived experience. Getting change driven by people with lived experience and the insight and expertise they can bring is a hugely important part of co-production. However, as Isaac Samuels, a co-production advisor and Ideas Alliance Associate, has found, the way that people with lived experience are treated and valued in the process can vary wildly. In this blog addressed to the co-production community, Isaac offers his thoughts about how we can better support people who are sharing their time, expertise and (sometimes traumatic) experiences with us.

What do we mean when we talk about lived experience?

I’m here today to talk about “lived experience”. A lot of us involved in co-production think about lived experience as an essential part of the process. But I’m not sure we always fully understand what it means, or that it’s such a useful term anyway. Often in co-production circles, you will hear the mantra that “everyone has lived experience”. This is really unhelpful. Because you may have a lived experience of cancer treatment, you may have a lived experience of sexual abuse, you may have a lived experience of social care. But when we’re talking about lived experience, what are we really talking about? I think that in the work we do, we’re often talking about those that have multiple disadvantages around having the best possible lives. People who have had problems getting the right support, people who are dealing with trauma.

What we’re really talking about is multiple disadvantage.

I actually think that there’s something quite perverse about the use of lived experience at the moment in lots of spaces. We’re not just saying “tell me about your lived experience”. We often don’t want to hear the good bits. What we’re sometimes saying is “bring the bad bits of your life and share that”. And not only that, but share this with us, and we’ll take it, and we’ll use it to help form a conclusion to our own projects that have been funded – and you might not be involved in what happens next. Some of the language and process around lived experience has become everything it shouldn’t be: it’s become formulaic, we even have acronyms now like “EbE”, expert-by-experience.

Is lived experience used responsibly and ethically?

The worst conversations in co-production start with “we value you, but”. That’s something I experience a lot: “we value your lived experience input, but we can’t pay for you, and we can’t offer you support…”. There are just so many buts! It makes me think, how can you really value people’s experience of multiple disadvantage if you can’t meet them even halfway?

It feels like we roll people out. I’ve experienced whole conferences, where lived experience is carefully inserted into the programme. But rather than actually convening people and getting lived experience up front, it feels like a sort of trauma porn. I’ve been asked to spill my worst experiences, as the opener to a conference, while the professionals in the crowd roll their eyes and then offload their own feelings of being browbeaten – and I’m left with all that to deal with.

I think there are big ethical questions that we really do need to pay attention to. Things like:

  • How do we ensure that lived experience is built throughout all of the things we do?
  • How do we step back and give space?
  • How do we not re-traumatise people and become part of the problem?

Preaching to the converted

Organisations often underestimate the time and attention that is needed to do this work. Working with lived experience means showing up, it means being open to being vulnerable, it means rethinking what is valuable. It means you have to create space. When we, as people with lived and learned experience, come together and share power, we can achieve a lot. But it’s also important to think about who isn’t in those spaces.

There’s a lot of great people doing this work but sometimes we’re at risk of recycling the same ideas with like minded people. How do we influence people outside the groups, organisations, projects and people we regularly come into contact with? It’s not usually deliberate in the spaces we’re in that it’s often the same people in the room. I feel spoilt because I get to work alongside people who really get it. But that’s such a small group of people, and sometimes I feel like I’m preaching to the converted about the value.

People have clustered together and formed networks based on similar values and views. It’s not by design, but it is by not paying attention, and we need to pay attention.

If we want diversity, we have to be more deliberate in achieving it.

How do you ensure that people, when they look at an organisation, a facilitated event, a space, can see themselves in there? And what if what they bring because of their experiences is quite messy or different from the status quo?

Similarly, I think there is a tendency to work with those stories that are easy to connect with or present people in a certain way. Part of the human condition is that we connect with things that are based on our own experiences, things that we feel comfortable with. And there’s all of these things like systemic racism, gender-based violence, all of these things that are magnified within society come out within lived experience work, but absolutely not everyone has the skills to facilitate or even navigate those spaces. Creating space is really hard but creating the right conditions, time and space (physically and organisationally) for co-production is the biggest thing you can do to help it flourish.

Open the doors

Another big thing that I try to pay attention to is who is coming up behind me – what opportunities can I make for them? Because of the way that funding is often short-term, or projects are commissioned on a time-limited basis, sometimes it can feel like we use lived experience to achieve an outcome, and then move on. Really, the space in-between our different projects is a key opportunity to make even greater social change. We need to invest in connecting it up and the way that you do that is by investing in people. People who have experiences of multiple disadvantage can be supported and trained and then use their expertise to go on to help others and facilitate co-production. That is expensive, and time-consuming but worth it if we’re serious about social change.

I am here because other people saw something in me that I couldn’t see in myself and they nurtured and supported that.

And I see things in other people that they just can’t see in themselves. Investing in that person because you can see something, supporting that person to meet their best potential, trying new things with them, that is how we can really make the most of lived experience for change.

We talk about “treating people equally”. That’s the worst thing you can do with lived experience. What you need to do is respond to what people need. For some people, that’s minimising the barriers for them, for other people it’s being at the end of the phone when they have a bit of a wobble.

Lived experience for the long-term

I know that for me to be involved in something, it costs more time, it costs more money, it costs more resource. That’s because of my lived experience and the barriers that I face. It takes a very good organisation to accept that cost and support it because they believe that that is what’s needed for this work. There’s a level of support that you need to be able to offer to people. It takes a really good organisation to think and weigh up the value of having people who have experienced those disadvantages and properly resource and support people.

Once again, it all comes down to creating the right conditions. When it works really well, when you invest in relationships and support, you help people find opportunities or discover bits about themselves that they may not have thought were possible. What do people experiencing multiple disadvantage need more than anything? We need allies, we need people who can support us to find opportunities, people to walk alongside us and try to navigate all of this together. Clearly you can’t do any of the work without lived experience, but it has to be value-driven and properly resourced and supported. Building those long-term relationships would enable people with lived experience to come together and tell organisations – this is the work that you need to be doing.

This is obviously easy to talk about, but difficult to do.

Organisationally, it’s hard to see how to build in this work (and resource it) outside the work that you are funded or commissioned to do. As well as surrendering to what we don’t know, giving up power and asking the people we are trying to support what would help them, we also need to navigate our boards and our funders and our partnerships by trying to educate around the value of including people that have experienced multiple disadvantage on projects, and how those people can become the change leaders of the future.

Top tips for change

This blog is written as a challenge to the status quo around lived experience. In co-production, there is this much-vaunted ideal state that we should be walking in the shoes of those with multiple disadvantage to understand how they navigate the world. In my opinion, the idea that we should try to “feel what other people feel” and “experience what they experience” can sometimes be a bit disingenuous. I can’t understand what it’s like to be you. But I can hear you, I can walk alongside you and make a human connection based on mutual vulnerability.

I’m calling upon people involved with working with lived experience to:

  • Make sure they understand what we are doing when we use lived experience.
  • Make sure there is a good rationale for why we are using lived experience.
  • Make sure we’re not re-traumatising people.
  • Think about how we can move from creating, even with great pieces of work, quite tokenistic change to wider, systemic change.
  • Be okay with messiness.
  • Look at true diversity of experience.
  • Build long-term relationships with proper support and scope for development.

Big thanks to Isaac for writing this powerful blog and using his insight to give us such clear action points. If you are interested in getting in touch with Isaac to find out more about his work, you can email hello@ideas-alliance.org.uk and we’ll put you in touch.

Photo by Andrew Moca.

Share this article:

Similar articles

by Helen Sturman

Rebuilding Community Connections with Not Another Co-Production Project

Helen Sturman, Greater Manchester and West Yorkshire Area Development Manager for Parkinson’s UK, shares her experience of being new in the job when joining Not Another Co-Production Project. She outlines the importance of flexibility when rebuilding community connections with people with long-term health conditions, and how co-production values the range of life experiences, knowledge and skills that people can bring.   …

Read article
by Mel Parks

It doesn’t have to rhyme: Collaborative creative writing as a community tool

Mel Parks shares ideas on using collaborative creative writing in community settings to bring people together, creating a unified experience often with the added benefit of new insights and surprising connections. As well as being lots of fun! Many people are scared of poetry and creative writing often brings back memories of school, and often not good ones, so I…

Read article
by Mel Parks

Not Another Co-Production Festival

It’s almost one year since we began our Not Another Co-Production Project and it’s time to celebrate all the amazing work that’s been happening with our partner organisations in Greater Manchester. And to help us celebrate, we’d like to invite you to join us at our Not Another Co-Production Festival! The first of its kind anywhere.  We are working with…

Read article