‘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.
Celebrating Neurodiversity
For adults navigating late-diagnosed ADHD, burnout, or sensory overload: how somatic grounding helps when the world isn't built for your brain.
Beyond the language of 'disorder'
It feels more positive, here and now, to be discussing neurodiversity as a term to describe the broad and glorious spectrum of different neurotypes that exist across human populations. The word is celebratory, with ‘diversity’ seen as something to be achieved and delighted in. An acknowledgement of all the different ways that brains can work and that this contributes to the many different skills and traits that make up a well-rounded society. Of course, neurodivergent brains are still described through the language of ‘disorder’ and still, in many cases require support, be it medical or psychoeducational. I’ve been reframing the language of ‘disorder’ for myself by looking at some of the traits and tendencies that can present challenges, and how they often seem to have a ‘mirror’ trait that is an advantage (like the struggle to think clearly through a task in ordered steps, vs. the creative thinking that gave me the edge in those 4am essays). Still, a society that, just like the school system I remember, is not designed with neurodivergent experiences in mind can be an exhausting place to navigate.