Why Lived Experience Matters in Disability: Who Gets to Decide?

Disabled people bring knowledge that can change how things work. Being invited to tell a moving story gives us very little influence if someone else still makes every decision.

I was diagnosed with chronic myeloid leukemia in 2015. In 2023, I had open-heart surgery to replace my aortic valve. I’m a disabled person living with chronic illness, and I’m also a former United Nations humanitarian professional and the editor of this magazine.

Those facts belong in the same introduction.

A medical history tells you something about my life. It doesn’t tell you everything I know, what I can contribute, or which decisions I’m qualified to help make. Equally, having professional experience doesn’t cancel out what I’ve learned by living in this body.

That’s why a paper by 16 disabled scholars and advocates caught my attention. Published in Evidence & Policy in 2025, their discussion of disability lived experience and expertise asks whose knowledge gets taken seriously when decisions are made about disabled lives.

It’s a question that belongs at URevolution. We publish personal stories because they matter. We should also question any arrangement in which disabled people supply the stories while other people reserve the right to explain what they mean and decide what happens next.

What lived experience helps us understand

Lived experience matters in disability because it reveals how decisions work in everyday life: whether a service is usable, a workplace rule excludes someone, or support actually helps. Disabled people can identify problems outsiders miss and contribute to solutions. That knowledge deserves influence over decisions, with room for different experiences and disagreement.

Consider a community event advertised as accessible. There’s a ramp. Good. But the registration form won’t work with a screen reader, the session runs for three hours without a break, and the only way to ask a question is to speak quickly into a microphone.

This is an illustrative example, but the distinction is practical. A building feature can appear on a checklist while the event still excludes people. The people trying to attend may know exactly where the plan breaks down.

Chronic illness adds another dimension: arrangements have to work for bodies whose capacity may change. A remote option, a break, or time to respond afterward can determine whether someone participates at all. Organizers need to ask what people require instead of guessing from appearances.

None of this makes one person the authority on every disability. My experience of leukemia doesn’t tell me what it’s like to be deafblind. Someone who uses a wheelchair cannot automatically speak for someone with an intellectual disability. Even people with the same diagnosis can want different things.

The point of listening widely is to find out what we’ve missed.

When an invitation becomes tokenism

Disability tokenism happens when an organization includes disabled people in a visible way but gives them little meaningful influence. The photograph looks inclusive. The decisions remain elsewhere.

The 2025 paper describes several ways this can happen: organizations can choose people likely to agree with them, seek personal testimony while keeping interpretation in professional hands, or invite participation without creating routes into leadership.

This paper is a collective argument developed through discussions and a review of existing literature. It isn’t a survey measuring how often tokenism happens, and its Australian examples shouldn’t be mistaken for findings about every American organization. What it offers is a useful way to examine the distribution of power.

Imagine a workplace asking disabled employees to comment on a new attendance policy after the policy has already been approved. Staff can describe the problems. They may even receive a thoughtful thank-you. But if nobody can change the rules, what was the invitation for?

Some consultations do have a narrow purpose. An organization might genuinely need feedback on wording rather than a redesign of its whole service. It should say so. People deserve to know which decisions are open and which are closed before they give their time.

Watch what happens when someone disagrees, too. An invitation that survives praise but disappears after criticism tells you something about how welcome that person really was.

Lived experience and lived expertise

The authors make a distinction worth explaining without the academic vocabulary.

Lived experience is knowledge gained through your own life. Lived expertise, as they describe it, brings that experience together with learning from other disabled people, knowledge of disability rights and barriers, and skills developed through activities such as advocacy or research.

For example, someone may know that a service’s application process is exhausting because they have used it. Through working with other applicants, comparing their experiences and learning how the service makes decisions, they may also become skilled at identifying which rules need to change.

The authors describe a spectrum. Their distinction is a proposal about recognizing knowledge, not a universal definition everybody already agrees on.

I find it useful, with a firm condition: it must never become another test disabled people have to pass before anyone listens.

You don’t need a policy qualification to explain that a service is failing you. You don’t need to become an advocate to deserve accessible information. And being articulate in a committee meeting shouldn’t determine whose life counts.

At the same time, when someone has developed substantial knowledge and practical skills, describing them only as “a person sharing their story” can obscure the work they’re doing.

Professional knowledge and lived experience can also exist in the same person. A disabled teacher is still a teacher. A researcher with chronic illness still brings research skills. My former humanitarian career and my experience of illness give me different perspectives; neither qualifies me to speak for everyone.

URevolution’s article on the infantilization of disabled adults examines a related problem: assumptions about disability can lead people to discount an adult’s judgment before they’ve listened to it.

You can contribute without disclosing everything

There’s another part of the paper I want readers to sit with. Asking people repeatedly to describe painful experiences can carry a cost, particularly when those disclosures produce little change.

Personal storytelling has value. It can help someone recognize their own experience and make an overlooked problem understandable. URevolution exists partly because, after my leukemia diagnosis, conversations about illness became awkward. Honest stories can make those conversations easier.

But nobody owes an audience the most painful version of their life.

A person can explain why a process needs changing without detailing every humiliating encounter that brought them to that conclusion. They can offer an analysis, make a recommendation, or say that a particular question is private.

The expectation that disabled people should produce an emotional response also connects with Stella Young’s challenge to inspiration porn: whose needs are being served by the way the story is told?

For editors, employers and event organizers, this means asking what someone wants to contribute. Agree on how their words will be used. Explain whether a session will be recorded and who will see it. Respect a refusal to discuss something personal.

Those are practical editorial standards I draw from the paper’s concerns. They aren’t a claim that every invitation to share a story is exploitative.

What meaningful involvement looks like

Start early enough for people to change the plan.

That could mean disabled residents helping decide what a community survey asks, rather than only completing it. It could mean a disabled employee helping assess possible workplace arrangements before management selects one. A person’s role should be clear, with enough information and support to carry it out.

A 2026 paper about two courses at Curtin University offers a concrete example. Disabled people helped plan, write and teach the content. Many of the lived experience educators had substantial communication and learning support needs. The paper also reports that disabled co-authors were paid for their work on it.

The authors say a study of the courses’ longer-term effects is underway. We shouldn’t claim those effects have already been demonstrated. The example matters because it shows people contributing to the work itself, including people whom conventional meeting formats can exclude.

There are American examples of making participation possible, too. In its account of its 2025 advocacy work, the American Association of People with Disabilities reports covering travel and lodging for nearly 120 disabled advocates from 33 states to attend its Disability Power on the Hill event.

That report doesn’t prove every participant had equal influence. It does show an organization taking responsibility for practical costs instead of assuming everyone could afford to attend.

Meaningful disability inclusion requires attention to those details. Pay people fairly for the work you ask them to do, and explain the arrangement beforehand. Make materials accessible. Allow different ways to contribute, including written responses and communication support. Build in breaks. Ask what would help.

Then report back. Explain what changed because of people’s input and what didn’t, including the reasons. Disagreement is possible even in a fair process. Silence makes it impossible to tell whether anyone considered the contribution at all.

Questions to ask before saying yes

If you’re invited to a panel, advisory group or consultation, these questions can help you decide whether the role is worth your time. They’re a practical checklist drawn from the issues above, rather than a formal assessment tool.

• What can my input change? Ask which decisions are still open and who will make them.
• What work are you asking me to do? Sharing a personal account, reviewing a proposal and helping lead a project are different jobs.
• Who else is involved? One person shouldn’t be expected to represent every disabled person.
• What payment and access support are available? Include preparation time, expenses and the ways you need to communicate.
• How will my contribution be used? Clarify recording, publication, attribution and the boundaries around personal information.
• When will I hear what happened? Ask for a named contact and a plan for reporting decisions back.

You can ask these questions without agreeing to the invitation. You can also decline. Living with a disability does not create an obligation to spend your available energy improving an organization.

If you’re the person extending the invitation, put the answers in it.

“Nothing about us without us” means disabled people should be involved in decisions affecting our lives. The uncomfortable part is what follows: people already making those decisions have to make room for others to influence them.

That’s the standard I want URevolution to take seriously. My experience gives me something to contribute here. So do the experiences and knowledge of our writers, including when they see things differently from me.

Before asking another disabled person to tell their story, decide what you’re prepared to let them change.

Source and adaptation note

This article adapts and discusses ideas from Disability lived experience and expertise: recognising the expert contributions of people with disability, by Shane Clifton, Emma Cooper, Johnny Bourke, Sam Connor, Scott Denton, Benny Dominish, Clare Gibellini, John Gilroy, Lorna Hallahan, Suzie Jessep, Simon Katterl, Damian Mellifont, Bruce O’Brien, Frances Quan Farrant, Annmaree Watharow and Robert Wynn. Published by Policy Press in Evidence & Policy, 21(4), 578–595 (2025), © the authors, under Creative Commons Attribution 4.0 International.

Brendan McDonald’s URevolution adaptation uses a new structure and wording for a general audience and adds personal context, illustrative examples, practical questions and further sources. The original authors have not reviewed or endorsed this adaptation. No source images are reproduced.