Note from Sharing Power Cell 2
Summary of key points
Lived experience is powerful in designing and delivering better policies and practices but needs to be used thoughtfully, through ‘reflective practice’ in ways that promote co-creation with professionals and ensure power is genuinely shared.
Organisations need to provide spaces in which genuine listening can take place in open-ended ways which avoid labelling, harming or exploiting people and which enable them to feedback on the process and find out how their input has been used, and from which everyone involved can learn.
Staff with lived experience are an important resource but need appropriate support to avoid trauma leaking out into work or being re-traumatised, or burn-out.
Funders can do more to involve people with lived experience, including making funding available for involvement in pre-project shaping activities, as well as post-project evaluation.
In more detail
Caroline Slocock, co-convenor of the Better Way, introduced the cell. She explained that the aim was to share insights with each other and inspire each other to do more, and that we would share learning from these discussions with the wider network and beyond (for example we had been feeding network insights into the Danny Kruger report for the Prime Minister about the role of civil society).
Our Better Way Call to Action pointed out that power is in too few hands, she said, and sharing power is one of the ways to redress that. At our first meeting Sue Tibballs reminded us that we have more power than we think. As a result of COVID-19 we might see more division and inequality in society, but there are also opportunities and we see some organisations changing their strategy.
The topic for this meeting was how we create inclusive conversations that drive change, and what is it about giving up power that makes us so uncomfortable?
Our guest speaker was Whitney Iles from Project 507. This organisation, set up by Whitney in 2011, works in prisons and community settings with young people who are leading lifestyles that are physically, psychologically or emotionally harmful to themselves and others. Project 507 employs people with lived experience and has taken that lived experience and turned it into trauma informed professional practice. It does not see itself as being there to help, more to create a space in which people learn and create together through co-production in a way that benefits everyone and with the aim of people becoming healthy, happy people.
Whitney said that Project 507 also help other organisations and policy makers to make use of lived experience but in doing so it’s important to think what we mean by this and who do we leave out. We will always miss some voices, some experiences.
She underlined the importance of lived experience for ‘filling in the gaps’ for policy makers and those developing practice, for example in the prison system. Lived experience can be invaluable, not least informing those around the policy table or who put policies into practice who would not otherwise know about the nuances of how things actually work in practice and whether they change lives, or not. Without this knowledge, the danger is that policies and practices either will not work or actually create harm.
And there is a big difference between tokenism (using people only for their lived experience, projecting labels on people eg ex-offender or ex-gang member, not ensuring people are emotionally safe and forcing people to disclose, ignoring the risk to the individual, failing to pay for the expertise) and empowerment (opportunities to learn and develop, with agreed labels, roles and job titles, creating reflective space for people to think about how they apply their experience, and providing clinical supervision and other support). Those who are ex-service users can often become overloaded with work and responsibility, and can suffer burn-out.
Reflection is vital to creating together and the best way to build in lived experience is through ‘reflective practice’ for participants to think about and process their experience, she explained, and this applies to practitioners too – thinking about why they bring young people to the table, what it means for us as ex-service users, including reflecting on the power dynamics in the group.
This should happen throughout and – critically - after the end of work, whether it is changing policy, an event, or practice, as this is an important piece of learning. Did those with lived experience feel heard, are there things that have been learned about working together? Sharing the learning is sharing the power and helps us to deal with nuances of why we don’t share power in the first place, she said. This learning should be set out in documents which should be shared and discussed with everyone involved.
Through reflective practice, she concluded, people from different backgrounds and experiences are able to come together and create something that is incredible.
Breakout sessions
Participants broke into smaller groups to discuss these topics further. Feedback from the breakout sessions, and the subsequent discussion facilitated by Steve Wyler, Better Way co-convenor, included the following points:
Creating the conditions for better participation
We need to create listening organisations in which people are heard as people and are truly valued. Framing the question can be problematic so have to start with an open book and provide space for people to speak, without stereotyping. Spaces where people can relate to each other as people, rather than according to their functional roles, can help to break down power imbalances.
It is important to see a person as separate from their circumstances. Avoid labels and definition by a particular lived experience. If you get to know a person it is possible to build the trust that is necessary for inclusive conversations. Attempts to share power become uncomfortable where there isn’t sufficient trust.
We need to remember that sharing power takes a long time.
Setting the agenda and an organisation’s strategy is best done with a mix of those who are service users, front line staff, managers and Board members, providing payments for people with lived experiences as well as opportunities to learn and develop.
Moving from listening to action – it is important to maintain the dialogue and feedback to build trust and help people understand they have made a contribution.
Involvement of others
It is important to listen with the right people in the room, but much can also be gained by people connecting to others not in the room, building linking social capital and so sharing power.
Often people want to talk about solutions and the systems – can we think about lived experience at a collective level not as heroic individuals?
We need to trust communities to know what they want and what they want to focus on, rather than impose a truth or theory of change on them, asking them to refine or test it.
In COVID-19 we need a blend of expert health professionals, as well as lived public health experience - things go wrong when one or the other is lacking.
If there is sufficient diversity people don’t have to feel grateful that they have been invited in.
In every meeting it is useful to have an empty chair, and ask the question, who isn’t here?
Managing the tensions within an organisation
Sharing power implies giving away control, and this comes with risks.
Within an organisation there is often a tension between the front line staff, who tend to have a depth of understanding and respect for the people they work with, and fundraising and communication teams who can treat lived experience as a commodity to be applied by the organisation for its own ends. This tension needs to be addressed at senior management or Board level, but rarely is.
As other Better Way discussions have explored, the dominant model of leadership is highly gendered, with centralising command-and control behaviours, and this needs to be challenged if we are to see more distributed forms of leadership, more conducive to sharing power.
Some pitfalls
Poverty-pimping is far too common. Staff members who are for example ex-gang members confer credibility and help attract funding for their organisation. As a result organisations often fail to encourage them to move on when they are ready for this.
Many organisations want their service users to tell their personal stories, but discourage their delivery staff from doing that. In fact, staff may have a great deal of lived experience they could share, and service users could play a much greater role in designing and shaping the delivery of services.
Organisations need to consider carefully what support is required. Without therapeutic training, trauma can ‘leak’ into work unproductively and this needs to be managed in a supportive and safe space.
There are concerns about how co-production is applied. When a professional has an agenda and gets people with lived experience into a room to design something according to that agendas this is not sharing power – those people might have wanted to design something different.
What does it mean to be an active ally? When professionals feel they don’t have legitimacy and pass the responsibility to those with lived experience that can do harm. It is tokenistic to think of lived experience as a trump card.
The term lived experience is not one some of those in the discussion liked because it is in danger of becoming just another label and we all have lived experience. It’s better to be more specific about what experience people have.
What funders can do to help
Lived experience is in vogue among some funders at the moment. But most still expect applications to come with fully worked out aims and interventions and outcomes, rather than investing in the process of working with a community to establish what these should be. This means that insight from lived experience becomes, in practice, an afterthought.
Funders could encourage organisations to include post-event reflection, as Whitney described, in their funding bids as a standard feature of the projects they fund.
Final reflections from Whitney
We need to understand better the intersectionality of gender and race, and avoid designating people in ways which places them in the impossible position of representing whole classes of people.
We have to be ready to do the difficult work, and be willing to give up control and power, however uncomfortable that makes us feel. In sharing power, and including people with lived experience and these whose voices haven’t been heard, there will be a spectrum of collusion, positive and negative, and many grey areas to navigate.
Next meeting
Wednesday 16 September, 2.00-3.30pm.
Topic: As organisational strategies change in the light of Covid-19, how can we use this shift to give more power to people in society?