In the span of a few weeks in two unrelated settings, I heard it: “Nothing about us without us.” The first time was in a meeting about peer-assisted recovery for survivors of substance use disorder. The second time was in a community forum about empowerment training for marginalized Black youth. The separate speakers who said these words imbued them with the same meaning: they were an incantation of self-determination. The speakers didn’t attribute them to any person or source, but they clearly made an impression on the audiences.
However, these words weren’t new to me. “Nothing about us without us” defined my coming of age as a self-aware and self-loving disabled person. These words were borne from the movement that gave me a future outside the walls of an institution for “crippled” people. These words helped to topple the physical and social barriers that kept people like me trapped inside prisons of shame and pity. These words liberated people with disabilities.
Disability rights activist James Charlton traced the origin of “Nothing about us without us” to South African disability rights advocates in the 1980’s. Before that, it was used as a rallying cry among Eastern European labor organizers and in the very distant past, came from a sixteenth century law limiting the power of a king. In the present day, “Nothing about us without us” has been adopted by others fighting for self-empowerment and self-determination. But, it is best known as a slogan of the disability rights movement.
People with disabilities used these words to demand inclusion in policy and decision-making processes that shaped their lives and environments. They used these words to forcefully condemn paternalism and the medical community’s deficit-based labelling of their minds and bodies. Wielded by people with disabilities, “Nothing about us without us” preceded a sea-change in the language and goals of disability policy. Former patients became consumers and former beneficiaries became stakeholders. Self-directed care plans replaced doctors’ orders. Independent living overthrew institutionalization as the gold standard for life in the community.
So, when I heard these words invoked, I was fiercely proud. “Nothing about us without us” endures as an unapologetic protest chant. It singularly captured the demands of people with disabilities who fought to overturn an entire system of oppression. And that’s why its roots in the disability rights movement must be remembered.
I was the only visibly disabled person in each room where those words were spoken. I wondered whether anyone other than me knew their history. Did the speakers even know? I hope that “Nothing about us without us” continues to be used to unlock the freedom of marginalized people. And I hope, when they use it, they mention its role in the disability rights movement.