“Nothing About Us Without Us”
— Tracing the History of Sign Language and Disability Rights

1. The phrase “Nothing About Us Without Us”

The roots of this phrase reach surprisingly far back. It is a political motto in the line of the Latin “Nihil de nobis, sine nobis” (nothing about us, without us), said to trace back to the parliamentary traditions of Central Europe. At the end of the 20th century, it gained new life as a slogan of the disability rights movement.

What made it widely known was the 1998 book by the American disability rights activist James I. Charlton, Nothing About Us Without Us: Disability Oppression and Empowerment (University of California Press). Charlton did not “invent” the phrase. In the book he records that he heard it in 1993 in South Africa, separately, from two leaders of disabled people's organizations (Michael Masutha and William Rowland). In other words, this slogan is a phrase that has been passed down and nurtured among disabled people around the world.

At the core is a single point: nothing about those directly concerned should be decided without them. Not as an object to be helped, but as a subject who decides their own life — this idea runs through the movements we look at next.

2. From civil rights to disability rights (the U.S.)

The disability rights movement inherits much from the Black civil rights movement. The U.S. National Park Service's account of disability history notes that Brown v. Board of Education (1954), which found school racial segregation unconstitutional, “laid the groundwork for recognizing the rights of people with disabilities.” Reframing disability not as “charity for the pitiable” but as “a civil rights issue” — that very idea was inherited from the civil rights movement.

The Section 504 sit-in (1977)

Its symbol is the struggle over Section 504 of the 1973 Rehabilitation Act. Section 504 was the first federal civil rights provision in the U.S. to prohibit disability discrimination in programs receiving federal funds. In fact, this text took the language of Title VI of the 1964 Civil Rights Act, which banned racial discrimination, and carried it over almost verbatim, replacing the ground of discrimination from “race” with “disability” (U.S. Department of Justice). Writing the ban on disability discrimination into law as a “civil rights issue” was itself a direct inheritance from the Black civil rights movement. Yet the signing of the regulations needed to actually enforce it was shelved for years.

In April 1977, about 150 disabled people, out of patience, occupied the San Francisco building of the federal Department of Health, Education, and Welfare. This was the “504 Sit-in.” Lasting about 25 days, it became one of the longest occupations of a federal building, and the authorities finally signed the regulations almost unchanged. Judith Heumann, one of the central figures, said, “Through the sit-in, we transformed ourselves from oppressed individuals into people with power” (Smithsonian National Museum of American History). The very tactic used in this sit-in was borrowed from the “sit-ins” the civil rights movement had made succeed in the 1960s.

And strikingly, this occupation was supported by the Black Panther Party of the Black liberation movement, which brought warm meals every day. The Party's 1977 statement declared solidarity: “This is a human rights issue — the right of disabled people, an oppressed minority, to employment, education, and basic survival.” Here the civil rights movement and the disability movement literally sat at the same table. One person who embodied this bridge was Brad Lomax, a Black Panther Party member who used a wheelchair because of multiple sclerosis.

The bus, and “access is a civil right”

Speaking of the civil rights movement, some may think of the 1955 Montgomery bus boycott (the protest in which, after the Black woman Rosa Parks was arrested for refusing to give up her bus seat to a white passenger, Black residents refused to ride the buses for about a year). The disability movement, too, had its “bus struggle.” In July 1978, in Denver, 19 wheelchair users — later called the “Gang of 19” — stopped buses at an intersection for two days in protest against new buses that had no lifts. Their slogans: “Access is a civil right” and “We will ride.” The civil rights struggle over buses was being repeated, this time by disabled people. In 1983 this movement grew into ADAPT, an organization demanding accessible public transit nationwide, and eventually the 1990 ADA mandated lifts on fixed-route buses (RTD Denver).

The independent living movement, and on to the ADA

Another current is the independent living movement. Ed Roberts and others, who entered the University of California, Berkeley in 1962 as students with severe disabilities, pushed for better access to housing and education, and in 1972 founded the world's first Center for Independent Living (CIL) in Berkeley (UC Berkeley). The independent living philosophy — that disabled people decide their own living, work, and community participation — was exactly the practice of “nothing decided without us.”

In 1990 the movement reached one of its peaks. Demanding passage of the ADA (Americans with Disabilities Act), about 60 disabled people cast aside their wheelchairs and assistive devices and crawled up the steps of the U.S. Capitol. This was the “Capitol Crawl.” The image of Jennifer Keelan, an 8-year-old girl with cerebral palsy, crawling up the steps became the symbol of the protest. About four months later, on July 26, 1990, the ADA was enacted — a landmark law in the lineage of civil rights law, comprehensively prohibiting disability discrimination in employment, public services, facilities, and communications.

3. The day deaf people stood up to “decide for ourselves”

There is an event in which deaf people themselves vividly demonstrated “nothing decided without us”: the “Deaf President Now (DPN)” movement of March 1988.

The stage was Gallaudet University, a university for deaf and hard-of-hearing people. In the 124 years since its founding, every president had been hearing. That year, when the board rejected two deaf candidates and again chose a hearing president, students rose up and shut the university down. They made four demands: the resignation of the chosen hearing president; the selection of a deaf president; the reconstitution of the board so that deaf people held a majority; and no reprisals against the students and staff who protested.

In just one week, all the demands were met. I. King Jordan became Gallaudet's first deaf president. The Gallaudet University Museum frames the movement as “a symbol of the self-determination and empowerment of deaf and hard-of-hearing people.” Not having someone else decide, but choosing our own leader ourselves — DPN was the deaf version of “nothing decided without us.”

4. To a promise for the world — the CRPD

The ideals nurtured in struggles around the world eventually became a promise shared worldwide. The Convention on the Rights of Persons with Disabilities (CRPD) was adopted by the UN General Assembly on December 13, 2006, and entered into force on May 3, 2008.

This convention was the very embodiment of “Nothing About Us Without Us.” The UN made the phrase the theme of the 2004 International Day of Disabled Persons, explaining that “the essence of the rights-based approach is embedded in the slogan ‘Nothing About Us Without Us’” (UN Enable). Indeed, disabled people and their organizations took part in drafting and negotiating the convention on an unprecedented scale, bringing their experience and expertise into the text. Articles 4(3) and 33(3) oblige states to involve disabled people in implementation and monitoring. “What concerns us, we help decide too” — that became the language of international law.

5. In Japan — from the disability-discrimination law to the sign-language law

Japan then put its domestic laws in order so that it could ratify this convention. In sequence, the flow was as follows.

• 2011The Basic Act for Persons with Disabilities was amended. It set out participation — “all persons with disabilities... shall be ensured opportunities to participate in activities in all fields” — and explicitly included sign language as a “language” in law (Basic Act, Article 3). The same year, a Commission on Policy for Persons with Disabilities, including disabled members, was established in the Cabinet Office.
• 2013The Act on the Elimination of Discrimination against Persons with Disabilities was enacted. The same year, Tottori Prefecture enacted Japan's first Sign Language Ordinance — the first ordinance in Japan to treat sign language as a “language” rather than “welfare.”
• 2014Japan ratified the CRPD (January 20). Ratification came only after domestic law had been prepared (Cabinet Office, Disability White Paper).
• 2016The Disability Discrimination Elimination Act took effect (April 1). It set out a ban on unfair discriminatory treatment and the provision of reasonable accommodation (Cabinet Office).
• 2024The 2021 amendment took effect, making reasonable accommodation by private businesses a “legal duty” rather than an “effort duty” (Government of Japan PR Online). Shops and companies, too, are now expected to provide accommodation based on dialogue.
• 2025The Sign Language Measures Promotion Act was enacted and took effect. It positions sign language as “a language and an important means of communication,” and sets responsibilities for national and local government to promote measures (Cabinet Office).

And this ideal is written clearly into national plans, too. The government's Fifth Basic Programme for Persons with Disabilities states that it will “promote inclusion under the philosophy of ‘Nothing about us without us’”, positioning disabled people as “not objects of policy, but subjects who participate in society based on their own decisions” (Cabinet Office, 2024 Disability White Paper). The phrase exchanged in South Africa, which moved movements in America and became a promise to the world at the UN, is now a single line in Japan's own plan.

6. “Nothing decided without us” around sign language

Laying out this history, one thread comes into view: rights were not “given” by someone, but shaped little by little as the people directly concerned raised their voices, demanded to take part, and gave it form. And at their root there was always the one line, “Nothing About Us Without Us.”

Behind sign language being written into Japanese law as a “language,” and behind the spread of sign language ordinances and the Sign Language Measures Act, lay long years of movement by deaf people and their organizations. Here too, what moved history was the voices of those directly concerned.

“Nothing About Us Without Us” — at the very center of that “us” are always the people directly concerned. When we think about the future around sign language and deafness, whether that voice is at the center will surely keep being asked. That, I think, is the question this old phrase still quietly poses.