Representation Is Not Enough: Disabled People Need Roles With Real Influence

Does having a disabled person on the panel mean anything has changed? Not by itself. A seat is only the start.

The UK government’s Disability Foresight Research, published in March 2026, found that a fairer future needs far more disabled people in leadership roles, in elected office and in the media. I agree with that. Representation matters.

But I’ve also seen plenty of cases where someone was invited so the group could say someone had been invited. Representation can be a photo. Influence is a decision.

Why representation matters

When disabled people lead, decisions get made with real knowledge of what services and spaces are like to live with. People watching can see what’s possible. And the people in those roles get to shape the things that shape their lives.

That only happens when the role has teeth.

A seat or a say?

Here are the questions I’d ask about any role that’s meant to give people a voice:

• Does it come with responsibility, a budget or a vote, or only an opinion?
• Can the person say no, or say “not like that”, and have it count?
• Is it visible, so the person gets credit as well as the work?
• Is there a way up from here, or is this a one off invitation?

If the answers are mostly no, it’s a seat without a say.

Paid, visible, with a way up

Paying people for lived experience matters more than it sounds. When we expect expertise for free, we tell people it isn’t really expertise. It’s a favour.

Pathways matter too. A single panel seat isn’t a career. A real leadership role grows. The person gets more responsibility, more training and more say over time, and the organisation changes because of it.

Measure what changed

This is the part almost no one does. Ask what changed because of someone’s contribution. Which decision went a different way? Which process was fixed? What did the organisation stop doing?

If nothing changed, the role was probably decoration. I’ve written about the signs in consultation isn’t co design, and they apply to leadership roles too.

The bit that matters most

Visibility matters, but a valued leadership role means having the authority to shape what happens next.

Think of one group you’re part of. Who has a seat, and who has a say?

Madeleine x