Why Co-Production Matters: Shaping Policy With Disabled People, Not For Them

As Chair of Disability Rights UK, I’ve seen first-hand how transformative true co-production can be—not just in our services and campaigns, but in the very foundations of our organisation. 

Co-production isn’t a buzzword or a tick-box exercise. It’s about sharing power, building trust, and recognising that lived experience is expertise. For us, it’s the only way to do justice to the values of equity, anti-racism, intersectionality and inclusion. 

When we developed our current strategy, we did it in full partnership with our community. Disabled people—across a range of identities and experiences—were involved from the very beginning, shaping the vision, priorities and decisions that will define our future. That process challenged us, deepened our thinking, and made our strategy stronger, more relevant, and more ambitious. This is what co-production looks like at the highest level. 

Co-production also brings something else that’s vital: authenticity. When Disabled people lead conversations about the issues that affect them, those conversations change. They move away from jargon, formalities and abstract “policy speak”—and into grounded, honest dialogue with real meaning. 

As one of our co-producers, Rachel, recently said: “My contributions to the work gave a new, raw, alternative angle which had not been thought about before. My perspective only enhanced the work and enabled a more inclusive and authentic process with better outcomes, not only for the organisation carrying out the work, but more importantly for the people who would be affected by the work”.  

But co-production doesn’t stop once the strategy is written, or the project begins. It’s also about asking: how well is this working? Who’s missing? What are we learning, and how should we change in response? We must keep checking that what we’re doing reflects not just those in the room—but the wider diversity of Disabled people, especially those most often excluded. True co-production includes accountability, adaptability and ongoing commitment to representation. 

We bring that same approach to our national policy work. On the Assisted Dying Bill, we worked with Disabled people to co-produce responses and briefings that ensured our message was led by those most affected. In our work on the cost-of-living crisis, we’ve prioritised lived experience to inform campaigning and evidence for change. And when it comes to getting active, we’re not just designing opportunities for Disabled people—we’re building them with Disabled people, from the ground up. 

Co-production is not always easy. It takes time, care, and a willingness to listen—and to be changed by what we hear. But it is essential. As we mark Co-Production Week, I want to reaffirm our commitment as a charity: to work with Disabled people at every level, to challenge injustice, and to build a future rooted in collaboration and respect. 

We invite our partners, policymakers and allies to do the same. Co-production isn’t just a process—it’s a value. And it’s one we’ll keep centring in everything we do.