Pop star Katy Perry recently hitched an 11-minute ride on Blue Origin's all-female New Shepard flight. She crossed the Kármán line, floated in micro-gravity, snapped the obligatory weightless selfie, and came home a social-media meme — not an astronaut.
What even is "lived experience"? The term has been stretched so far that it's lost its shape. In disability, mental health, and DEI circles, the phrase has grown to cover everything from "I've been through it" to "I'm a credentialed peer practitioner." That lack of shared definition fuels both confusion and tokenism.
Experience is what's happened to you.
Skill is what you can reliably do because of, or sometimes in spite of, those happenings.
The overlap matters. Navigating a city where half the tram stops still lack level boarding can turn you into a first-class logistics planner. Wrangling the NDIS portal can make you a pro at process-mapping. Yet logistics planning and process-mapping are skills in their own right. They're nameable, teachable, transferrable, and measurable.
Bundling them under one label — "lived experience" — devalues the skills and turns the whole thing into a feel-good fog that obscures what people can actually do.
Experience has value and is often a source of derived and transferable strengths. Think: resilience, spotting patterns others miss, deep levels of empathy, and a talent for lateral problem-solving. But those strengths don't come fully formed. They mature like any other skill, through feedback, mentoring, and deliberate practice.
Someone who's mastered the art of navigating Melbourne's tram network in a wheelchair can offer razor-sharp insights into physical design, but that expertise won't magically extend to coding an accessible website. In the same vein, Katy Perry can describe exactly how it felt during blast-off — yet none of us would hand her the steering wheel for re-entry.
We teach audiences to value the spectacle of difference, not the utility of insight.
When we invite people in purely for "their lived-experience story" and then do nothing, we risk turning them into living novelty acts. That's when tokenism wins.
Lived experience can spotlight problems others don't see, but that's not the same as knowing how to solve them. Expecting the same person to also provide the solution is a fast track to disappointment.
When you ask, "You've lived it, so how would you fix it?", you transfer the burden from the system that created the barrier to the person who had to navigate it.
You also set them up to fail. If the plan stalls — due to budget constraints, politics, or legacy technology — blame can fall on the very voice you invited in. They feel unheard, and leaders feel "consultation fatigue." Everyone loses credibility.
Policy reform, product design, or service innovation all demand cross-functional expertise. Lived experience can guide priorities, but implementation still requires project managers, developers, designers, and people whose job it is to make hard things work.
People with lived experience bring more than just their story. Many already have professional skills — in policy, tech, communications, design — because lived experience doesn't come with one hat. It's not a role. It's a reality.
Expect those skills. Ask for them. Make room for them.
Only if we withhold the means to gain them. Equal contribution needs equal footing. That means more effort and money need to be invested so people with lived experience can access up-skilling, mentoring, and formal training.
Invest in that development, and you unlock both the insight of lived experience and the professional capability that turns insight into impact.
Reducing people to mascots of their own histories devalues those histories.
Next time you bring lived experience to the table, ask yourself two things:
And if you are someone with lived experience... Don't let anyone box you in or flatten your value down to a story.
You are not just a perspective to be consulted, or a quota to be filled. You're allowed to want more than to "share your experience." You're allowed to be ambitious, strategic, technical, and creative.
So if you've got skills, name them. Use them. Keep sharpening them.
And if you're building those skills now, know that the work matters.
The world needs both your insight and your capability.
Don't wait for permission to develop both.
You are more than your lived experience.
Make sure the people around you know it — and more importantly, make sure you do.
Kelly is the Managing Director of [Knowable.Me](http://knowable.me/), driving value creation and providing data and insights into the needs and preferences of people with disabilities.
Throughout her career, Kelly has held senior corporate roles in Complaints, Accessibility & Inclusion, Customer Experience, and Brand & Communications. Her blend of strategic thinking and human-centred design methodologies brings alignment of disparate groups to influence positive momentum and drive growth.
Kelly holds Chair and non-executive board roles and is a member of the Technology, Innovation & Value Creation Committee of Swinburne University. She is a graduate of the Australian Institute of Company Directors.
Kelly identifies as “blind, with just enough vision to be dangerous” and is ably assisted by her guide dog, Zali.
This article is written by one of our brilliant community members. Their experiences, opinions and perspectives are uniquely their own — and that’s exactly why they matter. They don’t necessarily reflect the views of Knowable Me or our partners, but they do reflect real life. And we think sharing real life is how things change.
Knowable Me acknowledges that Australia contains hundreds of nations, spanning more than 65,000 years, and we live and work on land unceded by Aboriginal and Torres Strait Islander peoples.Their wisdom, story telling, and deep listening is a history we pay respect to in the way we conduct business.
