“Nothing About Us Without Us”: What Does Participation Mean in 2026?

On March 12, 1990, eight-year-old Jennifer Keelan-Chaffins left her wheelchair at the foot of the U.S. Capitol steps. Around her, other people with disabilities abandoned their wheelchairs and crutches and began the climb toward the Capitol.

These images have become fixtures of disability history, but they are also easy to interpret too quickly. The Capitol Crawl is often presented as a late and decisive moment in the campaign for the Americans with Disabilities Act, suggesting that the protest secured the law’s passage.

The timing invites that conclusion. The ADA was signed a little more than four months later. Yet the proposed law had already passed the Senate, and people with disabilities had spent years organizing, testifying, negotiating, and pressing for broader civil rights protections. The law emerged from a prolonged fight for change, advocacy, and legislative work, not from a single demonstration (American Experience, 2025; Davis, 2015).

What, then, did the Capitol Crawl change? Perhaps it affected some lawmakers. Perhaps its more lasting effect came through the photographs, which gave the public an image of exclusion that legislative language had struggled to convey. The available history does not reduce the protest to one clear result.

The demonstration’s origins are as important as what it achieved. People with disabilities determined what the public would see, where they would see it, and how the case for change would be made.

“Nothing About Us Without Us” had not yet become a common refrain in American disability advocacy, but its principle was already at work. People with disabilities sought more than a place within an established decision-making process. They challenged who defined the problem, which solutions were considered, and whose needs those solutions were expected to serve.

These questions are not confined to one protest or one piece of legislation. They arise wherever public decisions shape access and independence. A transportation policy can determine whether someone reaches school or work. A health-care rule can affect whether treatment is available. Choices about technology and support services can either increase access or place more limits on people’s options.

This is why people with disabilities should be included in the decisions that affect them. Their direct knowledge and experience can provide context that may not otherwise be available to policymakers.

Being present, however, is not enough to address these concerns. A person with a disability may attend a meeting, respond to questions, or examine a plan without significantly shaping the final outcome. In some cases, involvement begins only after the major decisions have been made. When participation begins early, it can broaden the range of options and meaningfully influence the final decision..

This distinction helps clarify why the Capitol Crawl remains important to examine. Its significance cannot be measured solely by whether it influenced a particular vote. The demonstration also allowed people with disabilities to define the public argument through their own actions and perspectives. The action offered a visible illustration of the broader barriers to access that people with disabilities encountered and continue to encounter.

The words “Nothing About Us Without Us” entered American disability advocacy through a wider international history. James Charlton learned of the phrase through disability advocates in South Africa. In 1998, he used it as the title of his book about oppression, political participation, and empowerment among people with disabilities. The wording was new to many American readers, although the idea it expressed was not (Charlton, 1998).

Long before the phrase became widely known, people with disabilities in the United States were objecting to decisions made without their involvement. The independent living movement questioned practices that allowed other people to determine where a person with a disability would live, what support would be available, and how much authority that person would have over those choices.

Independent living did not mean living without assistance. It meant having a substantive role in decisions about housing, services, and support. The central principle was that people with disabilities should help determine the conditions under which they lived (Fleischer & Zames, 2001).

This understanding also shaped the development of independent living centers. Many were created and directed by people with disabilities, giving form to the belief that lived experience contributes knowledge that cannot simply be supplied from outside. The centers did more than provide services. Their structure raised a continuing question about who should define what useful assistance looks like.

A similar question was present during the struggle over Section 504 of the Rehabilitation Act of 1973. The law prohibited disability discrimination in programs receiving federal financial assistance, but the regulations needed for enforcement were delayed. In 1977, people with disabilities took part in protests at federal offices across the country, including a lengthy sit-in in San Francisco, to press for the regulations to be signed without changes that would reduce their scope (National Museum of American History, 2015).

The Section 504 protests are often remembered for their length and for the effort required to sustain them. They also reflected a broader dispute over who had the authority to decide whether the proposed regulations were sufficient. The people most directly affected were not merely responding to a completed policy. They were asserting a role in determining what protections the regulations should provide.

Section 504, the independent living movement, and the Capitol Crawl did not emerge from the same historical moment or follow the same path. Each developed in a distinct context, involved different participants and strategies, and pursued its own immediate objectives. Despite these differences, they reveal a recurring concern about decisions that profoundly affect people with disabilities without giving them a meaningful role in shaping those decisions (Barnartt & Scotch, 2001; Pettinicchio, 2024).

The campaign for the Americans with Disabilities Act demonstrated this principle in the legislative process. People with disabilities were not merely affected by the proposed law. They helped shape it. They testified before lawmakers, met with members of Congress, shared their experiences, and contributed to the language of proposed bills. Through this sustained involvement, they brought the perspectives of those most directly affected by disability policy into the legislative process.

Advocacy also extended beyond formal legislative channels. Participants organized demonstrations and engaged in internal discussions about strategy, priorities, and legislative language. The law enacted in 1990 reflected years of negotiation and bipartisan cooperation, as well as sustained advocacy by people with disabilities and their allies (Davis, 2015; Fleischer & Zames, 2001).

The law established broad civil rights protections for people with disabilities in employment, government services, transportation, public accommodations, and other areas of public life. Regulations, court decisions, organizational policies, and individual disputes have continued to shape how those protections are interpreted and applied (U.S. Department of Justice, n.d.). Passage of the law did not end the conversation. Instead, it created new settings in which the meaning, extent, and limits of participation would have to be examined.

The Capitol Crawl is part of this broader history, although its direct influence is difficult to measure. A photograph cannot reveal whether a senator reconsidered a position or whether the demonstration affected a particular vote. It can, however, capture people with disabilities making themselves visible and taking part in a debate that directly concerned their lives. The protest’s effect on the legislation may remain uncertain, but its place in public memory and disability history continues to be examined and interpreted.

The phrase “Nothing About Us Without Us” is now widely used in policy, research, and public settings. Its familiarity can create the impression that the principle has been broadly accepted and consistently applied. However, repeated use of the language does not demonstrate the quality or influence of participation.

It does not show when affected people were invited into the process, whether they had access to relevant information, whether they could question the assumptions or limits of the discussion, or whether their contributions altered the outcome.

An invitation to participate does not always provide a genuine opportunity to influence decisions. People with disabilities may not be brought into the process until an organization has already established its priorities. By that point, the available options may have been narrowed and certain issues placed outside the scope of discussion.

More meaningful participation begins earlier. It gives people with disabilities a role in shaping both the priorities and the process. Their involvement continues as decisions are implemented, evaluated, and revised. Participation can take many forms, each offering a different degree of influence.

Differences within the disability community make participation more complex. No single person can speak for every disability, community, or lived experience. Some people need additional time or support to communicate. Others may face barriers when the process does not accommodate how they communicate or participate. The language, pace, and structure of a discussion can all affect who is able to contribute. Assumptions about how people should communicate can also limit whose perspectives are heard.

Meaningful participation begins with more than an invitation. People need accessible information, enough time to consider it, appropriate communication support, and recognition of the expertise they bring. They also need to know which parts of a decision are still open to influence.

These conditions do not ensure consensus, nor does meaningful participation require every recommendation to be adopted. What matters is whether people had a genuine opportunity to influence the decision as it took shape, rather than being invited to comment once its direction was largely settled.

The Capitol Crawl does not offer a simple measure of how fully “Nothing About Us Without Us” has been realized. It does show people with disabilities shaping how the issue was understood and seeking a role beyond observation. The principle has gained broader recognition, though its role in decision-making continues to vary.

Perhaps the more important question in 2026 is not whether an organization invokes the phrase “Nothing About Us Without Us” or invites people with disabilities to participate. It is whether their presence changed the process in any meaningful way. Did they influence the questions being asked, the options under consideration, or the final decision? Participation matters most when it leaves a discernible mark on how a decision is understood and made.

If the process, the choices, and the eventual decision would have remained exactly the same without their participation, what did participation mean?

References

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