Why Lived Experience Is Expertise

Ever been told you are “too close to it” to be useful? That closeness is exactly what makes your knowledge worth having.

Some people learn how a system works by studying it. Some learn by living in it, year after year, through forms, waiting rooms, phone queues and decisions about their own life.

Both are real knowledge. They know different things.

What lived experience knows

It knows what the process feels like from the inside. Not what the policy says should happen, but what actually happens on a Tuesday afternoon when the person who was meant to call back does not.

It knows:

• where people get stuck, and how long they stay stuck
• what the forms do not ask but should
• which words in a letter people misread
• what the cost is, in energy, money and time, of getting something that was meant to be simple
• which workarounds people quietly invent to get by

A policy writer can read a hundred reports and still miss these things. The person who has done it twice has not.

What it does not replace

Lived experience is one kind of expertise. It does not replace legal advice, medical care, research, or the professional knowledge of people who have studied a system for years.

My own work brings lived experience together with youth work, leadership, community involvement and codesign. I do not think any one of those is enough alone. The strongest work happens when they sit side by side and nobody has to pretend the others are less real.

Why it gets overlooked

A few reasons come up again and again:

It sounds like a story. Stories are often treated as softer than data. But a pattern across many people’s stories is data, and it points at things numbers miss.

It is not paid. Professionals are paid to share their view. People with lived experience are often asked to give theirs for free, or for a thank you.

It is uncomfortable. It tells a system what it got wrong, and not everyone wants to hear that.

It is labelled as bias. Someone who has lived with a problem is told they are too emotional to judge it. Someone who has never lived with it is told they are neutral. Neither of those is quite true.

What good looks like

• Lived experience is involved from the start, not added at the end to approve a decision already made. See Consultation Is Not Co Design.
• People are paid, or fairly recognised, for their time.
• Their words are not edited into something more comfortable.
• They are told what happened as a result.
• They can say no, or stop, at any point.

Using your own

If you have been through something, you already hold knowledge that others need. You can use it to speak up for yourself, to help someone else, or to help change how a system works. How to Turn Lived Experience Into System Change shows one careful way.

You do not have to turn your experience into anything. It counts either way.

What to remember

Knowing a system from the inside is not a lack of objectivity. It is a different kind of evidence, and one that every good decision about people should include.

Read how this shapes our work on Evidence and Impact.

Madeleine x