The Unpaid Labour of Expertise: Why We Need to Pay for Lived Experience

Understanding the emotional and cognitive labour behind every suggestion

June 10, 2025

Recently, two professionals traveled quite a distance to meet me at home. Part of our meeting was a welcome acknowledgment that some things had gone wrong with their service, and I truly appreciated that gesture. But another part of the agenda was less expected: they wanted to "pick my brains" on how to improve things.

And I'll be honest, inside, I sighed.

By the time a disabled or Deaf person is sitting in front of you, calm, articulate, and seemingly prepared to help, you might not see the emotional and cognitive labour it's taken just to be in that chair. There’s a story behind every suggestion we offer, a story shaped by:

Years of hitting invisible and visible barriers.
Feelings of being dismissed, overlooked, or misunderstood.
The frustration of needing to explain, in multiple ways, just to be heard.
The burden of becoming an "accidental expert" in systems that weren't designed for us.

So, when professionals, however well-meaning, ask us to help fix those systems for free, it can feel incredibly one-sided. It’s not because we don’t want things to improve, we do, deeply, but because our insight comes at a personal cost, while the person across from us is being paid to listen.

Why Fair Recognition Matters

If you invite someone to share their lived experience, compensate them. Show them the same respect you'd extend to any consultant, researcher, or specialist. This isn’t optional; it acknowledges that emotional and educational labour and community expertise are as valuable as technical skillsets.

Principles for Authentic Co-Production

If you're new to truly inclusive work, here’s how to build equitable partnerships from the start:

Start from the Edges: Engage with people furthest from power, those whose voices are most often unheard, and work back from their needs to shape your service.
Acknowledge and Compensate Expertise: Always pay at least a living wage, cover travel or communication costs, and budget for ongoing support. Your respect should be tangible.
Share Decision-Making Power: Involve lived-experience advisors in agenda-setting, design choices, and governance. Don’t just seek feedback after decisions are already made.
Build Accessibility In, Not On: Assume that access and inclusion are foundational from the outset. If someone flags an inaccessible process (a website, forms, or a complaints system), commit to fixing it without making them propose the solution.
Avoid Tokenism: One person cannot represent an entire community. Create diverse panels or rotating advisory groups to capture a wide range of perspectives and experiences.
Be Transparent and Accountable: Set clear goals, publish your progress openly, and invite critique, not as a box-ticking exercise, but as part of an ongoing, genuine partnership.

Your Call to Action

Ready to move beyond "picking brains" to building truly inclusive services? Here’s where to start:

Review Your Budget: Actively allocate funds for paid engagement at a living wage, moving beyond mere "expense reimbursements."
Map Your Community Edges: Identify those least represented in your current structures, then proactively reach out to understand their unique barriers first.
Pilot Co-Production Practices: Start small. Invite three lived-experience advisors to co-create just one element of your service (e.g., website navigation, a complaint form, or an intake process).
Share What You Learn: Publish a short case study or blog post detailing your successes and challenges. Others will learn faster because you dared to lead with inclusion.

This isn’t about blame; it’s about balance. True co-production thrives when goodwill is matched by respect, shared power, and fair compensation. If you want to build truly accessible and responsive services, start by investing in the people who’ve spent their lives navigating the very barriers you aim to dismantle.

#coproduction #engagement