When we talk about accessibility, a lot of the conversation tends to happen around people with disabilities, not with them. Governments pass laws. Companies create committees. Organizations develop strategies. And while these efforts are often well-intentioned, too many leave out the very voices they’re supposed to serve.
Here’s the truth: lived experience is expertise. And if we’re serious about making accessibility meaningful, people with disabilities must not just have a seat at the table; they need to help set the agenda.
The Problem with Good Intentions
There’s a famous saying in the disability community: “Nothing about us without us.” It’s more than a catchy phrase, though. It’s a fundamental principle. Yet, even today, accessibility initiatives are often designed without true input from people with disabilities.
Too often, accessibility work gets reduced to a compliance exercise: check a few boxes, meet the bare minimum legal requirements, and move on. Or it’s framed around the convenience of non-disabled people, making environments “easier” or “friendlier” without addressing deeper, systemic barriers.
When decisions are made in boardrooms, design studios, or government offices without disabled voices present, the results can be harmful. Policies miss the mark. Designs look good on paper but fail in real life. Advocacy efforts stall or unintentionally reinforce stereotypes.
Without lived experience guiding the way, accessibility risks becoming performative instead of practical.
Why Lived Experience Matters
Lived experience offers something that textbooks, training, and good intentions can’t: a real understanding of how the world works, or doesn’t work, for people with disabilities.
Think about it. Who better to identify barriers in a building, website, or service than the people who navigate those barriers every day? Who better to explain the impact of an inaccessible policy than the person directly affected by it? Lived experience brings a depth of knowledge, nuance, and context that you simply can’t replicate.
It’s not just about spotting problems either. Disabled people bring innovation, creativity, and insight into how things could be better, not just for them, but for everyone. Many of the accessibility features we all use and benefit from today, ramps, curb cuts, and voice-to-text technology, came from disability communities advocating for change.
Accessibility isn’t charity. It’s not an extra. It’s a right. And the best way to uphold that right is to center the voices of the people whose rights are at stake.
Representation Leads to Better Results
When people with disabilities lead accessibility work, the outcomes are better, plain and simple. Research shows that policies, products, and programs designed with direct input from disabled communities are more effective, more inclusive, and more widely adopted.
Real accessibility isn’t just about removing barriers. It’s about reimagining systems, spaces, and services to work for everyone. That kind of transformation only happens when the people most affected by inaccessibility have a meaningful role in shaping solutions.
Representation also matters for visibility and leadership. Disabled people are often underrepresented not just in decision-making roles but in public life more broadly. Centring disabled voices in accessibility work helps challenge stigma and shift narratives. It shows the world that disability is not a deficit, it’s a vital part of human diversity.
It’s About Power, Not Just Participation
Inviting disabled people to share their thoughts after decisions have already been made isn’t enough. True leadership means disabled people must be involved from the beginning, shaping ideas, setting priorities, and making decisions.
It means moving beyond consultation toward co-creation.
It means recognizing and valuing people with disabilities not just as participants, but as experts and leaders in their own right.
And it means paying them for their expertise. Too often, disabled people are asked to volunteer their time and knowledge, while others get paid to design “solutions.” Fair compensation is part of respecting lived experience as real, valuable expertise.
How to Move Toward Centring Disabled Voices
So, what does it look like to truly centre disabled voices in accessibility work?
- Hire disabled people into leadership, advisory, and decision-making roles.
- Co-create policies, designs, and programs with disabled people from the start.
- Listen deeply and be prepared to change course based on what you hear.
- Challenge tokenism: One person with disabilities on a committee isn’t enough. Strive for diverse representation across disability types, races, genders, and more.
- Value expertise: Compensate disabled people for their contributions just as you would any other consultant or specialist.
At the end of the day, accessibility done for people with disabilities without their leadership is incomplete. It risks missing the point entirely. But when disabled voices are leading the conversation, we create spaces, systems, and societies that are not only accessible, they are equitable, inclusive, and just.
Because who better to guide the future of accessibility than the people living that reality every day?