08/06/2026
The wonderful Shylet Kaseke strikes again with an infographic that describes the kind of disability washing where it might look like we have a seat at the table but in practise we remain an unheard afterthought. Where ideas to include us are developed without us. We are not a box-ticking exercise. Meaningful engagement is not easy, it takes work and commitment.
Big thank you to our Chair, Ruth Flood for the time to type out the infographic text and create the following image description:
Nothing About Us Without us
Not a slogan. Not A consultation. Not a token Seat. It is a requirement for justice.
A diverse group of disabled people hold a sign that reads
“We are not objects of charity or inspiration. We are experts of our own lives.
A megaphone blares “A radical demand for power, self determination and liberation”
The Contradiction : Consultation without Capitulation.
Tokenistic Seating Vs Structural Power
Visualised through a graphic of a single disabled person sitting in a wheelchair across a table from many people in suits. A speech bubble says “A seat is not power”
The table, agenda and language were set by the system.
You are outnumbered.
Lived experience is treated as “anecdotal”.
Decisions are made in pre-meetings or without you.
The Feedback Loop Trap
Visualised as a clipboard which says feedback collected with an arrow to a sign saying Internal Decisions Made Here. A speech bubbles says “Information Extracted. Power Retained”
“We asked you about your experience”
They run a focus group, tick a box, and take the data
You become a data source, not a decision-maker.
The burden of credentialism
Visualised by a brown woman resting her head in her hand, eyes down, disempowered and weary, next to a stack of books which say Policy, Research Methods, Risk management, Clinical Language and Management 101. A speech bubble reads “To be legitimate you must leave parts of yourself behind”
To be taken seriously, you must adopt the system’s language and credentials.
By the time you have a seat, your radical knowledge has been disciplined.
You become a professionalised insider, not a community representative.
The “Hard No” Ceiling
Visualised by a barrier which rests on a sign which says Stop Beyond this point. A speech bubble says Participation ends, where power begins.
Your voice is welcome- until it challenges core commitments (profit, liability, prestige).
When you say “no” or “ stop” you’re labelled : “Unrealistic” “Too Emotional” “Difficult” “Ungrateful”
You cannot veto, change direction or kill the project.
What Real Power-Shifting Looks Like
The Agenda
Not “How do we make our existing services better?”
But : “What do you want to create from scratch and we will fund and support it?”
The Veto
The person with lived experience (or their collective) has a binding “no”.
It cannot be overridden.
The Resources
Money, training and time are explicitly transferred to groups of people with lived experience to build their own solutions with no strings attached..
Disabled People As Fiduciaries.
True Power is when disabled people are not just advisors, but the ones holding the legal fiduciary duty for the organisation’s direction.
Why the charade continues
Legitimacy Laundering : The Slogan polishes reputation without giving up power.
Control over Definitions: The system defines “success” as compliance, not liberation.
Fear of Real Power-Sharing : Ceding control means accepting risk, uncertainty, and losing the right to decide.
This is not about being invited into the system.
It is about building the system we deserve.
Nothing about us Without Us was never meant to make the system nicer. It was meant to change who holds the power.
Until the architecture changes. The words remain empty.
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