Current issues with the way lived experience is engaged

The idea of rescuing people is endemic in the sector and it’s damaging.

The voluntary sector’s purpose is to help people and, of course, there’s nothing wrong with that. In fact, there’s everything right with that. But when you think carefully about the power dynamic that is inherent between the helper and the helped, the powerful and the powerless, it is important that the charity doesn’t wield its power over its beneficiaries: power with, as opposed to power over, as explored by the Power cube project at the Institute of Development Studies.[1]

The stigmatising of people and then the notion that we can rescue them as individuals, fallen people rather than frame what happened to them as an issue to be addressed. Where's the wisdom of the lived experience that is informing our managerial decisions, strategic decision making, and our governance?

Paula Harriott, Prison Reform Trust

'Charities often speak for people rather than letting them speak'

Charities will often rewrite people’s words so that they 'fit' better with their brand or some language convention that’s been decided somewhere. Spokespeople will also be chosen based on criteria which include how they express themselves. It’s important to reflect on why the very people who should be leading the work of your organisation are having to adapt themselves or be adapted. This way of thinking can even be potentially physically harmful as the quote below illustrates.

There was a young lady who was bipolar and managing all sorts of different mental health problems. She went to see a so-called specialist one day and he told her how she was feeling instead of asking her any questions. And actually, she wasn't feeling any of those things.

Retraumatising people

Often what we're asking people to do when we’re asking them to retell their stories is to revisit past traumas or very fresh wounds. We need to recognise that doing that creates trauma in itself and that it’s important to put mechanisms in place to support people and help them heal, whilst telling their stories.

If people don't see change as a result or if they're not told about the impact that their storytelling had, then that can be really debilitating too. It is crucial to make sure their stories are honoured with updates and feedback.

Extracting people’s pain in exchange for what?

People turn up at forums where organisations extract their information and say, thank you very much. And here's your £10 Tesco voucher. It feels like another modelling of the systemic stripping and extraction and exploitation of marginalised communities.

It is strange that the lived experiences isn’t valued as genuine expertise given it’s the heart and soul of the organisation. It should be seen as the most important and valuable asset that organisations have access to. People giving their time for free, particularly if they are less likely to have well-paid work or stable incomes, should not be the default expectation.

Support mechanisms for staff aren’t considered

Another area which is given very limited consideration to is the effect on, often young, often junior staff, of hearing these stories. The issue of resilience amongst charity sector staff is an important one, especially during this time of covid-19 when many people are working alone from home. Putting in place adequate support mechanisms is as important for the people telling their stories as it is for the people who are hearing them.

About the personal not the system

One of the dangers of engaging people to tell their stories is not being clear that the personal story is only part of the knowledge that they have. It is important to help people connect their story to the system and give them tools to work on changing it. Often charities engage people with experience of their subject matter in a way that means that the person thinks that it's about their personal experience, not about changing the system. We therefore have to get better at briefing people. We also have to be careful not to make people feel like tokens or imposters and ensuring that we are creating safe spaces. People’s involvement has to be designed in such a way that the person sees what they're contributing, and others around them see that too, and value it.

We heard 20 minutes of this poor guy’s horrific tale. And then everybody politely clapped. And I thought, well, I don't understand why we’re all clapping. They shouldn't have put him up to do that. Somebody should have empowered him to know that he didn't need to.