A motto of the self-advocacy movement is “Nothing About Us, Without Us!”. Lots of people talk about us without letting us talk. We should always be part of the conversation, and be in charge of our lives.
WELCOME TO THE AUTISTIC COMMUNITY
“Nothing about us without us” is more than a slogan — it’s an operational commitment. Disabled and neurodivergent people must have real decision-making power in the spaces, policies, research, and systems that affect our lives.
This page explains what that means and what it looks like when it is done right — and what it looks like when it is not.
What This Means
- People most affected by decisions should shape them. Token consultation is not enough.
- Leadership must include disabled and neurodivergent people with real authority — not invisible labor.
- Research must be participatory, not extractive. Lived experience is evidence.
- Policy must center dignity, not compliance. Systems that punish difference don’t deserve compliance.
- Communities build better solutions than distant experts. Local agency over remote authority.
Why Ordinary Inclusion Isn’t Enough
Inviting feedback is not the same as sharing power. Inclusion that stops at “asking for opinions” misses control, resources, and influence. When decisions stay with the privileged, disability gets framed as deficit, risk, or burden.
“Nothing about us without us” rejects that hierarchy. It says: lived experience is a source of authority, not a supplemental detail.
Meaningful inclusion is influence, not optics.
What This Looks Like in Practice
Design & Research
- Co-design with neurodivergent people from the start.
- Participatory methods that compensate contributors fairly.
- Transparent protocols, open data, shared authorship.
Organizing & Policy
- Decision-making bodies include disabled and neurodivergent people in real seats.
- Policies reflect lived priorities, not external assumptions.
- Gatekeeping practices are dismantled, not relabeled.
Education & Community Spaces
- Students and families shape learning environments.
- Feedback loops lead to design changes, not compliance checks.
- Safety and regulation come before instruction.
What It Doesn’t Look Like
This is not:
- Checkbox inclusion tokens.
- Focus groups whose input disappears.
- Decisions made behind closed doors.
- “Submit a survey and hope we listen.”
If You’re Building Something
Ask yourself:
- Who gets to speak? Who gets to decide?
- Are decision makers compensated?
- Is lived experience valued as evidence?
- Do processes survive scrutiny under openness?
History of NAUWU
I first heard the expression “Nothing About Us Without Us” in South Africa in 1993. Michael Masutha and William Rowland, two leaders ofDisabled People South Africa, separately invoked the slo- gan, which they had heard used by someone from Eastern Europe at an international disability rights conference. The slogan’s power derives from its location of the source of many types of (disability) oppression and its simultaneous opposition to such oppression in the context of control and voice.
“Nothing About Us Without Us” resonates with the philosophy and history of the disability rights movement (DRM), a movement that has embarked on a belated mission parallel to other liberation movements. As Ed Roberts, one of the leading figures of the international DRM, has said, “If we have learned one thing from the civil rights movement in the U.S., it’s that when others speak for you, you lose” (Driedger 1989:28). In this sense, “Our Bodies, Ourselves” and “Power to the People” can be recognized as precedents for “Nothing About Us With- out Us.” The DRM’s demand for control is the essential theme that runs through all its work, regardless of political-economic or cultural differences. Control has universal appeal for DRM activists because the needs of people with disabilities and the potential for meeting these needs are everywhere conditioned by a dependency born of powerless- ness, poverty, degradation, and institutionalization. This dependency, saturated with paternalism, begins with the onset of disability and con- tinues until death. The condition of dependency is presently typical for hundreds of millions of people throughout the world.
NOTHING ABOUT US WITHOUT US: Disability Oppression and Empowerment
“If we have learned one thing from the civil rights movement in the U.S., it’s that when others speak for you, you lose”
Ed Roberts
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