"Nothing About Us Without Us" as a Movement Principle
"Nothing About Us Without Us" is the defining slogan of the global disability rights movement, asserting that disabled people must be centrally involved in decisions that affect them. The phrase was adopted as a rallying cry at international disability rights meetings in South Africa in the early 1990s and was popularised globally by James Charlton's 1998 book of the same name.
Origins
"Nothing About Us Without Us" was not coined by a single person at a single moment but crystallised through the global disability rights movement in the late 20th century. The phrase has antecedents in European disability activism and broader human rights discourse, but its adoption as the central slogan of international disability rights is most associated with events in South Africa in the early 1990s and with the American activist and author James Charlton.
James Charlton — a Chicago-based disability rights activist and political theorist — encountered the phrase at disability rights meetings in South Africa around 1993. In his telling, it was used by South African disability rights leaders as they organised in the post-apartheid transition, drawing explicit connections between disability rights and the anti-apartheid movement's insistence on Black South African self-determination.
Michael Masutha and William Rowland, South African disability rights leaders, are among those credited with using the phrase in the context from which Charlton took it.
Charlton's Book
In 1998, Charlton published "Nothing About Us Without Us: Disability Oppression and Empowerment" through the University of California Press. The book provided the first systematic political-theoretical account of disability oppression as a global phenomenon — drawing parallels with colonialism, racism, and other forms of systemic oppression — and used "Nothing About Us Without Us" as its organising concept.
Charlton's core argument: disabled people across the world face common forms of oppression rooted in the belief (explicit or implicit) that disabled people lack the capacity to understand and articulate their own needs and interests. The response — the principle — is that disabled people must be decision-makers, not subjects of decisions made by others.
The Principle in Practice
"Nothing About Us Without Us" is not just a slogan; it is a demand for structural change:
- In policy: government disability policies must be developed with meaningful participation from disabled people's organisations (DPOs)
- In research: disability research must involve disabled people as co-researchers, not just subjects
- In healthcare: treatment decisions must centre the disabled person's perspective and consent
- In international law: the CRPD process (2001–2006) is widely cited as an example of "Nothing About Us Without Us" in practice — DPOs participated extensively in treaty negotiations
- In organisations: institutions serving disabled people must include disabled people in governance and leadership
Legacy
The phrase has become arguably the most widely known expression of disability rights globally. It has been adopted across disability communities — physical, Deaf, blind, psychiatric, cognitive, autism — and has influenced international development, human rights, and health policy. It is cited in UN documents, national legislation, and organisational missions worldwide.
Its power lies in its simplicity: it asserts nothing more than the basic principle that people affected by decisions have the right to be part of making them. That this needed to be asserted — and that it remains contested — reflects the depth of the ableist structures that disability rights movements continue to challenge.