As important as what we do, is how we do it. But who gets to be part of that ‘we’ is most important of all.
We thought we were living our values and recognising people’s strengths and potential when we first recruited people with lived experience into our team as Ambassadors, but now I realise our ambitions and belief were limited to thinking people could tell their stories. In fact, the mindset-shift from seeing people as ‘service users’ to colleagues has been halting, but profound, starting with the whole-team disability awareness training we realised we needed, despite being an organisation in the disability field. Most of the Ambassadors were in their first ever job of this kind, so we had to recruit for people’s potential, and for a role we didn’t fully understand. Gradually, I started doing most of my public speaking as a double act with an Ambassador colleague and found that having built my platform, sharing it was infinitely more impactful. Ambassadors drafted the ‘Ambassadors’ Test’, which sets out what good Shared Lives looks like from their perspective, and they also did peer-peer consultation work in the council areas where we were reviewing local services.
There are risks and pitfalls of working with and alongside people with lived experience. At its worst, people can be asked to re-live trauma endlessly for the education of professional people who wouldn’t dream of sharing their own toughest times with a group of strangers, much less, work colleagues. Sharing a story and feeling that it could create change can be very empowering, but can also continually define an individual as a ‘service user’ or a survivor, and be part of preventing them from moving on. We have tried to change aspects of how we work to be more inclusive and accessible, but people in lived experience roles usually start by being expected to fit into working cultures they can find alienating. Dot Smith at Recovery Connections is brilliant on this subject.
Longer-term, a key part of increasing the proportion of people with relevant lived experience in charities and service organisations is to change the culture and systems of those organisations, and to build the skills and confidence of people with lived experience, which will reduce those risks, but for the time being those risks are real and stem from failing to do two things well enough:
- Train and support people with lived experience to work within the power structures and systems they will encounter in their work.
- Co-design roles and the support structures around them with the people who take on those roles.
Creating ‘lived experience’ roles and recruiting people is not the end of the job – it’s the beginning of co-producing a more human organisation and part of creating a more diverse team. People with lived experience need the same things to thrive in a role or job that anyone else needs – training, mentoring, contact with peers, access to HR processes, opportunities to progress – but there are also unique questions in the design of roles which centre on someone’s lived experience. For instance, “What is the timescale for the role?”, which is a question closely linked to, “How will people progress in roles of this kind?” If the role is about telling a personal story, the answers may be ‘quite short’ and ‘with difficulty’, but that is based on assuming that when someone brings substantial recent lived experience to a role, that’s all they bring. Linked to this is the assumption that someone with lived experience must be in a role to “represent” other people with lived experience, as if everyone’s experiences are the same. No one can represent other people’s experiences, unless they have been elected by other people to do that. But when I speak publicly or make a decision, no one worries if I am ‘representative’ of others.
Involving people with lived experience thoughtlessly may be worse than not doing it all. But it’s ok not to have all the answers: this way of working is, frustratingly, still new to most organisations and learning and practice advice is still sparse. The important thing is to coproduce roles at every step of the way, and to see constant learning and re-design as not just necessary, but part of the point of such roles. Wherever you are on the ‘ladder of coproduction’, you can always climb to the next step.
Ultimately, the goal for me would be shared ownership of charities and public service organisations with the people who use their support and frontline workers, so a question I keep coming back to is, Whose organisation is this? The answer shouldn’t be ‘mine’! But do I always behave like I believe that?