‘Nothing about us without us’ – addressing tokenism, conflict and exploitative practice in work with experts by experience
For anyone commissioning or running work with experts by experience.
I recently heard a young adult involved in service design describe what it felt like to be brought into consultation meetings with senior leaders: she called it being asked to ‘put on the show’.
She was referring to the familiar request to share personal stories on demand: talk about the impact of the hardship she had faced, recount private struggles to a room of professionals, or provide emotional resonance for decision-makers.
Involving the people closest to a social issue in designing, delivering, and evaluating services – often described as ‘co-production’ (collaborating as equals with service users) or working with ‘experts by experience’ (people whose authority comes from having lived through the challenge) – is now fairly standard across social services, public bodies, and charities. When done well, it shifts institutional power and leads to services that make a real difference.
And yet, after twenty years in participatory work, I see the same systemic pitfalls recurring. Co-production fails in five predictable ways - here they are, with counter measures you can actually implement.
The Therapeutic Power of Singing
There’s something fundamentally human about singing. I’m not aware of any cultures in the world that don’t have music/singing (regimes that forbid music as a form of religious or political control notwithstanding). The variations in pitch and different voice qualities involved in singing tend to offer an opportunity to feel and express emotion more acutely than we might when we speak. The long, controlled exhale we tend to use when singing helps to re-regulate and soothe an over- or under-stimulated Autonomic Nervous System. And something in the predictability of melody helps to convey a message to our pattern-seeking brains in a way that’s especially memorable. The beauty of all of this is that it can work whether or not the singer is trained, can stay on pitch or feels confident in their abilities. In fact, a psychologically safe enough environment and an embodied approach to singing can support someone who is experiencing a ‘freeze’ response or veering wildly off pitch to make progress with these issues.