Lived experience is valuable because it gives us information we cannot get from a policy document, a spreadsheet, or a very enthusiastic meeting. It gives us another way of seeing a problem. More importantly, it can help solve problems. You cannot solve a problem with the same mindset that created it. Sometimes you need someone who experiences the problem differently to help you see what is actually going wrong.
I have learned this over the years as a person with cerebral palsy who uses a power wheelchair and communication device. I often find myself explaining things that seem obvious to me but are not obvious to someone who has never had to think about them before. That is not a criticism. We all have blind spots. What matters is what happens when someone points one out.
A simple example recently happened at a pub. They had a no-bookings policy after 5 pm, which is fine in itself. However, many tables were too high for me to use comfortably, and only a few worked with my wheelchair. I tried to explain that there might be plenty of room in the pub after 5 pm, but nowhere suitable for me to sit. The policy was simply repeated, rather than the situation being explored or a practical solution considered.
That was the real problem. I was not asking for the rules to disappear. I was asking someone to listen to what the rule meant in practice and consider whether there was another way of doing things. A little curiosity and a willingness to problem-solve could potentially have produced a simple solution.
This sort of dismissal happens to people with disability in many different parts of life. Sometimes we explain a barrier and are told why something cannot be done before anyone has really understood the problem. Sometimes a process has been designed with good intentions, but nobody has asked whether it actually works for the people who use it. Sometimes the answer is simply, “That is how we do things.”
Well, perhaps that is exactly the problem.
Lived experience challenges assumptions. It allows us to see an issue from another angle and recognise that the person experiencing it may understand it in a way others cannot. That does not mean people without disability cannot contribute to solutions. Of course they can. But the best solutions come when lived experience is part of the problem-solving process, rather than something added afterwards as a quick consultation exercise.
That is why listening matters. I do not mean listening while someone waits for their turn to explain why your suggestion will not work. Good listening means asking questions, being curious, and being willing to change your mind. It means taking what someone tells you seriously enough to consider what could be done differently.
Sometimes the answer will be a major change. Often, it will not. It might be a small adjustment that makes something work for more people.
I see this principle in Achieve Australia’s My Life, My Say program. Co-designed with young people with disability, their families and team members, it focuses on communication, self-advocacy and life skills. Having a say is not just about being invited to speak. It is about having the confidence and skills to communicate what you want and need, provide feedback and advocate for yourself.
The same idea applies to improving services. When people with lived experience are genuinely involved, they can identify things others might never notice. Achieve’s Quality Champions approach is one example, with people with lived experience gathering feedback and identifying opportunities for improvement. Their perspective becomes part of the solution, rather than a comment added at the end.
There is also no single disability perspective. I cannot speak for every person with disability, and nobody can speak for me. People have different experiences, communication styles, preferences, and support needs. That is why we need more voices, not fewer.
Those voices also bring more than personal experience. People with disability are researchers, writers, designers, employees, leaders, artists, advocates and decision-makers. We bring skills and expertise as well as lived experience. The two can work together to create better questions and better solutions.
So, do not just ask people with disability what they think. Listen to the answer. Try to understand what it means in real life. Then ask the most useful question of all: “What can we do differently?”
Because lived experience is not a problem to be managed. It is information. It is expertise. And when we really listen to it, it can be one of our most valuable tools for solving problems.