Notwithstanding the recent BBC/BAFTA furore, John Davidson’s advocacy for Tourette’s syndrome has significantly influenced public policy in the UK.  His lived experience has been a powerful tool for raising awareness and challenging both us as individuals and public policy makers.

Over the past few years, “lived experience” has become one of the most talked-about ideas in public policy. Across Scotland, people who’ve navigated the benefits system, experienced homelessness, supported a disabled child, or used mental health services are being invited into conversations that used to happen behind closed doors.

And that’s a good thing.

For a long time, policy was shaped mainly by professionals, academics and politicians. Their expertise absolutely matters. But reports and statistics can only tell you so much. They don’t always show what it feels like to wait months for a decision, to face barriers you didn’t create, or to fall through gaps no one realised were there. Lived experience brings those realities into the room.

We’ve seen the impact in Scotland. People with direct experience of inaccessible transport have influenced work led by Transport Scotland. Those who have experienced homelessness helped shape Housing First approaches in Glasgow and Edinburgh. Parents of children with additional support needs have pushed for more inclusive approaches in education. When lived experience is genuinely listened to, policy becomes more grounded and more humane.

But here is where it gets more complicated.  Firstly, whose lived experiences are encouraged and welcomed? We are witnessing a real time dilemma in drug policy in Scotland where current drug users are regarded as the primary experts at the expense of those in recovery.  When government-aligned organisations reshape who count as authoritative voices others find themselves excluded from consultations, advisory groups and funding conversations.

Many people involved in advocacy and using their experiences to encourage others are finding while “the term “lived experience” is meant to uplift voices … realise a hard truth: lived experience is being commodified, controlled, and sometimes even weaponised”[i]

‍Lived experience is not always respected. Too often, people are invited to “share their story” without being given any real influence. That’s tokenism. Their presence ticks a box, but decisions are already made.

‍There is also the risk of sanitising voices. If someone’s account is too uncomfortable, too critical, or too challenging, it can be softened or sidelined. What gets heard is a tidier version of reality – one that feels safe rather than transformative and more fits the policy decisions already made.

And no single person represents everyone. Experience is shaped by class, geography, culture, disability, race and many more factors. Elevating one voice as the authentic perspective can unintentionally silence others.

But here’s the truth: lived experience, while important isn’t the only authentic voice in public policy. When people have actually lived through an issue — whether that’s navigating the benefits system, caring for a disabled child, struggling with housing, or using mental health services — they understand how policies play out in real life. They see the gaps, the frustrations, and the unintended consequences. That kind of insight is hard to get from reports alone.

But public policy also needs other perspectives.

We need researchers who look at data and trends.
We need practitioners who understand how systems work.
We need leaders who weigh up costs, trade-offs, and long-term impact.

Good policy usually happens when these voices work together — not when one replaces the others.

If we rely only on lived experience, we might miss the bigger picture.
If we ignore lived experience, we risk designing policies that look good on paper but fail in practice.

The strongest approach is to bring real-life insight and evidence together — with mutual respect. It’s not a competition. It’s a collaboration.

If we ignore lived experience, we design policies that look good on paper but fail in practice. If we rely on it alone, we risk missing the bigger picture. The real opportunity lies in weaving these forms of expertise together.

That’s where real change begins.

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