“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

After the Glance

When someone notices my walking poles, what have they learned about me, and what story have they already begun to imagine? A visible disability can draw attention before a conversation begins.

Someone may notice a walking device or wheelchair. A limb difference, a speech difference, or the way a person moves through a room may also stand out. That observation is often treated as understanding. It does not explain what caused the disability, what may be difficult in a particular setting, what support may be useful, or what the person wishes to discuss.

I encounter that distinction whenever someone notices my walking poles and asks for an explanation. What often follows is a request for the story the initial observation did not reveal.

The questions may sound casual: What happened? Was there an accident? Will it get better? Each one places the same choice before me: how much of my private history I am willing to make public simply because my disability is visible.

Kathleen Bogart examines that decision in “Why People With Visible Disability Still Have to ‘Come Out.’” The article draws on interviews with 25 people with observable disabilities, including mobility disabilities, blindness, limb differences, deafness, and speech disorders.

The researchers use the term “observable disability.” I use “visible disability” here because it is more familiar, while recognizing that what is observable varies by person and setting.

People in the study still had to decide what to disclose, how much to say, and whether declining to answer would affect their access, the service they received, or how they were treated. Visibility did not reveal the cause of a disability, its consequences, access needs, or what it meant to the person (Bogart et al., 2026).

Seeing a disability is not the same as understanding the experience of living with it. A walking device may be used because of pain, fatigue, balance, weakness, distance, or several factors at once. A wheelchair may reveal something about mobility while saying little about strength, independence, or whether assistance is wanted. A speech difference can be heard, but it does not reveal the best way to continue the conversation.

What has actually been learned through observation? Often, what people notice is simply that someone moves, communicates, or participates differently. What that difference reflects is not always apparent.

Others may wonder whether the condition is temporary, whether assistance would be helpful, or whether a particular task is difficult. They may also assume that visibility makes questions appropriate or welcome.

One study participant used a leg brace and walking device because of cancer. Because others assumed that he had suffered a temporary injury, they often asked what had happened. The question called for an ordinary explanation, such as a fall or surgery, but an honest answer required him to disclose his cancer in what had begun as a casual conversation (Bogart, 2026).

The person asking may not have considered what an answer to the question would require. “What happened?” takes only a moment to ask, but answering may involve disclosing private information about illness, treatment, trauma, or an uncertain prognosis.

The person being questioned must then decide whether to correct the assumption, provide only part of the explanation, decline to answer, or allow the misunderstanding to remain. Each option can carry its own discomfort.

Asking is not inherently wrong, but context matters. The person who asks may not recognize that a seemingly casual question creates an immediate decision about disclosure. My experience also suggests that responses to visible disability are shaped by a person’s prior exposure, awareness, and sensitivity..

Someone who has spent time with people with disabilities may understand that assistance should not be assumed. Someone with less exposure may be uncertain about what to say or do.

That uncertainty may not come from poor intent, but it can still leave the person with a disability deciding whether to explain.

Questions about cause, duration, or change may follow. Was the disability present at birth? Was there an accident? Is it permanent? Is it improving? Could the same thing happen to someone else? Kathleen Bogart’s article and the related study suggest that the question “What happened?” may reflect more than simple curiosity.

The person asking may be trying to determine whether the disability resulted from an accident, an illness, or something they believe could have been prevented. They may also be assessing their own likelihood of having a similar experience. In this way, the question can make disability seem less personally relevant to the person asking (Bogart, 2026; Bogart et al., 2026).

Disclosure rarely stops at naming a condition. A diagnosis may prompt questions about treatment, followed by questions about recovery or improvement. A visible difference may also invite unsolicited advice about exercise, surgery, medication, therapy, or other interventions.

People with both observable and nonobservable disabilities may be asked to explain their diagnosis, how it occurred, what the future may hold, and what accommodations or assistance they need (Bogart et al., 2026). Questions about disability can reflect an assumption that the condition is expected to change, improve, or respond to treatment. They may pressure a person to explain what has been tried and whether more can be done.

At what point does concern become more intrusive than the conversation requires? The purpose of the conversation should determine how much information is needed. A physician may require a medical history, while a service provider or event organizer may need only the information necessary to provide access.

A step-free entrance does not always require an explanation of why stairs are difficult. Extra time may not require a description of symptoms. Another communication format may not require a diagnosis.

The conversation becomes personal when it moves beyond what is needed and begins asking about duration, permanence, or treatment. Its purpose should determine not only what questions are asked, but also where those questions end.

The research distinguishes between autonomous disclosure and compelled disclosure. Autonomous disclosure occurs when a person chooses to discuss disability to explain an experience, correct an assumption, build trust, or request access.

Compelled disclosure occurs when a person feels they have little real choice but to disclose because remaining silent could delay access, prevent a service from being provided, or affect how a request is understood.

People reported better outcomes when they could decide whether, when, and how to disclose a disability (Bogart et al., 2026). The fact that someone answers does not mean the choice was free of pressure. What would have happened if the answer had been withheld? Would the need still have been addressed? Would the boundary have been respected?

In my case, visibility is not a choice. My disability and walking poles are visible before I say anything. What I choose is whether to explain what others have noticed and how much to share. Most of the time, I choose disclosure.

I answer questions, even when the timing is not ideal, because the exchange may offer a chance to dispel a myth, provide context, or improve awareness. A question about my walking poles can become a discussion about why assistance should be offered rather than assumed. A question about access can lead to a broader consideration of how the environment shapes participation.

That openness is part of the reason I founded Wiley’s Walk.

Sharing experience can make an assumption easier to recognize and give someone a reason to reconsider what they understand about disability, independence, access, or support.

It does not make every question appropriate, and it does not always change a point of view. It is the choice I usually make after my disability has already been seen.

Sometimes the exchange leads where it was intended. Someone may reconsider an assumption or approach a future interaction with more awareness. At other times, the medical detail becomes the focus and the larger question is lost.

A discussion of access can become a story about perseverance. A description of a barrier may lead to praise for overcoming it rather than a question about why it existed. Intent can provide context, but it cannot tell the whole story.

Someone may have meant well or asked from genuine curiosity. Still, those explanations can obscure what the experience felt like and why it mattered. A person can choose what to share, but not what others take from it. A story may challenge one person’s beliefs and leave another unchanged. Telling it creates the possibility of connection without controlling the response.

Openness has limits. Writing publicly about disability does not make every detail available for discussion or every question deserving of an answer. Disclosure is a personal choice.

A person with a visible disability may want privacy, lack the energy to explain, or simply want a moment without becoming the subject of inquiry. One person’s openness should never become another person’s obligation.

A personal essay also differs from an unexpected question in a hallway, store, or meeting. Writing allows time to decide what belongs in the story and how to tell it. An unexpected question demands an immediate decision.

When disability is apparent, others may assume the subject is open for discussion, even though the person did not introduce it. A brief answer may invite another question. Declining may be mistaken for embarrassment. Even setting a boundary can create pressure to explain it.The information a person needs to disclose often depends on the setting.

A person may require assistance with one task but not another, and pain or fatigue may vary from day to day. A familiar route may be manageable, while an unfamiliar one demands advance planning. An online meeting may be accessible even when the in-person version is not.

This connection between setting and access helps explain why participants frequently disclosed information to secure access. A person with a mobility disability may not need to raise access concerns online but may need to disclose before entering a physical space.

When information about entrances, elevators, seating, and distance is unavailable, disclosure may become a condition of participation. The need to disclose, then, does not come from disability alone. It may also be produced by the environment.

An accessible entrance may be poorly marked. A meeting invitation may include directions, parking, and an agenda but leave out access details. A service may promise accommodations while requiring broad medical information at the outset.

Missing building information becomes a reason to disclose a mobility disability. An inflexible process becomes a reason to describe symptoms. Responsibility shifts away from the setting and onto the person attempting to use it. The question is not only why people disclose disability-related information, but why environments so often require them to.

Clearer information would not eliminate the need for disclosure. Disabilities vary, access needs can change, and no general description can anticipate every circumstance. It could, however, reduce the number of times people must reveal personal information simply to determine whether a place, event, or service is accessible.

Organizations can support that goal by providing advance information about entrances, elevators, restrooms, seating, captions, and remote participation. Service providers can also focus on the barrier and requested adjustment rather than asking for a personal history. This reduces the pressure to disclose a disability in order to obtain access.

When disclosure does occur, its effect remains uncertain. A personal story may challenge an assumption, encourage understanding, provide useful context, or make no visible difference. Its possible value, however, does not make it automatically available to others.

Before asking someone to share details about their disbility and circumstances, a more important question should come first:

Is this story mine to ask for, or theirs to offer?

A story offered freely can create understanding. A story expected or required changes the nature of the exchange. The difference lies in who decides whether it will be told.

References

  • Bogart, K. R. (2026, July 16). Why people with visible disability still have to “come out.” Psychology Today.
  • Bogart, K. R., Krauter, M. A., Cipollina, R., Wang, K., Sykes, M., Garrison, S. M., & Harcourt, D. (2026). “It’s harder to set boundaries when it’s so obvious”: Disclosing observable disabilities. Stigma and Health. Advance online publication. https://doi.org/10.1037/sah0000701

The Space Between Access and Participation

The Americans with Disabilities Act changed how access and inclusion are understood in the United States. Thirty-six years later, the question is no longer only whether people with disabilities are included. It is also whether they can use public systems, influence how those systems operate, and depend on the services they provide.

In “The ADA Turns 36. Why Are People With Disabilities Still Fighting for the Basics?,” Marcus D. Johnson examines the barriers people with disabilities continue to face. His argument raises three related questions: Can people with disabilities use public systems, are their perspectives considered while policies are being developed, and can their participation affect the result?

Access determines whether people can receive information, communicate in a usable way, and remain involved. Inclusion means considering their perspectives as the work develops rather than after its direction has been set. Participation means being able to raise concerns, offer alternatives, and affect the outcome.

Mr. Johnson argues that representation has limited value when people with disabilities are present but cannot affect the decisions being made (Johnson, 2026). That distinction becomes clearer when agencies seek participation after the direction of a policy or proposal has begun to take shape. An agency may appoint a person with a disability to a committee whose goals are already fixed or invite public comments after a proposal has developed. Attendance can be documented. Comments can be collected. The more difficult question is whether either changed the result.

Meaningful participation depends on timing as much as inclusion. People with disabilities are often left out of decisions that shape the systems and services they rely on. Their input may be requested only after the problem has been defined and the main options have already been narrowed. At that point, participation becomes largely symbolic. Meaningful involvement requires including people with disabilities early enough for their experiences and recommendations to affect the direction of the decision (Johnson, 2026).

Public decisions often involve budgets, limits on agency authority, and competing needs. Disability perspectives are also varied. A wheelchair user may encounter a different barrier from a Deaf person or a person with an intellectual disability. Representation therefore does not mean that one person or organization speaks for everyone. It means that people with different disabilities, backgrounds, and experiences are part of discussions about the policies, programs, and services that affect them.

The more useful measure is what participation allows people to do. Were they involved while possible responses were still being considered? Could they raise concerns and offer alternatives? Did the final record explain how their recommendations were addressed? The question is not whether every recommendation was accepted, but whether participation helped shape the result.

The New York City subway accessibility settlement offers a clear example of how public agencies can be held to defined accessibility goals. First announced in 2022 and granted final court approval in April 2023, the agreement requires stair-free access at no less than 95 percent of the 364 stations identified as inaccessible. It also creates a timeline through 2055 and outlines how the parties will manage funding, rising costs, delays, and progress reporting (Disability Rights Advocates, 2022; Metropolitan Transportation Authority, 2024).

By establishing measurable requirements, the settlement made the agency’s obligations easier to identify and track. Even so, its effect depends on the funding levels, deadlines, and other conditions set out in the agreement (Metropolitan Transportation Authority, 2024). The legal obligation is therefore clearer than it was before, but the experience of riders changes only as individual stations become accessible.

This gap between a recognized right and its implementation is one reason enforcement remains necessary. Legal action can require agencies to adopt specific measures, report their progress, and provide remedies when obligations are not met.

It can also shift much of the work onto people with disabilities, who may need to document the problem, determine who is responsible, obtain legal support, and remain involved for years. The remedy matters, but the effort and costs required to reach it should not be overlooked.

Those costs help explain Mr. Johnson’s focus on the decisions behind persistent barriers. He describes inaccessible transportation, delayed wheelchair repairs, inaccessible health care, and reductions in home-care options as policy choices (Johnson, 2026).

Mr. Johnson’s use of the phrase “policy choice” draws attention to the decisions that shape access. Funding may come from one source while another office manages the service, and a program may exist on paper without enough staff, trained providers, or a workable delivery system. A lack of funding is not the same as a failure to follow an existing rule, and a shortage of qualified providers cannot be solved by changing policy language alone. Divided responsibility can also obscure who has the authority and capacity to act.

The same problem appears in administrative records. A record may show that a medical referral was made without indicating whether the office has accessible equipment. It may show that a wheelchair repair was approved without documenting when the repair was completed or whether the person could use the equipment safely while waiting. A service can appear to be available while remaining difficult or impossible to use.

Hammel et al. (2008) found that people with disabilities described participation as more than the frequency of an activity. Their accounts emphasized active engagement, choice and control, personal and social meaning, and the influence of the surrounding environment.

Lived experience can show what happens after an administrative requirement has been met. It can reveal whether a referral led to accessible care, whether equipment worked, or whether a transportation option could be used consistently. One person’s experience cannot describe everyone who uses a program, but it can still show how a system worked in a particular case.

No single source shows whether a service is working as intended. Program records can show delays, financial records can show where money was directed, legal analysis can explain an agency’s duties, and research can show whether an experience reflects a wider pattern. Together, these sources can reveal whether formal access produces practical access.

The home-care debate shows how access, inclusion, and participation can arise within a single service. New York City’s Intro. 303, sometimes called the “No More 24” bill, is a proposed law addressing long home-care shifts (New York City Council, 2026a). The current version would generally prevent employers from assigning shifts longer than 12 hours, consecutive 12-hour shifts, or more than 12 hours within a 24-hour period. It would also limit assigned work to 56 hours a week unless the employee agrees in writing to work additional hours (New York City Council, 2026b).

If enacted, the bill would take effect on April 1, 2027. A temporary provision would allow workers to consent to shifts beyond the 12-hour limits until October 1, 2027. The current version also addresses workers covered by certain existing or renewed agreements and permits limited additional hours during unforeseeable emergencies, with a broader exception when additional work is necessary to protect the life or safety of a home-care recipient or employee. A staffing shortage alone would not qualify as an unforeseeable emergency. As of July 16, 2026, Intro. 303-B remained laid over in the City Council’s Committee on Civil Service and Labor and had not been enacted (New York City Council, 2026b).

Supporters argue that 24-hour assignments can subject workers to exhausting conditions, inadequate rest, and disputes over whether all hours worked are properly compensated. From this perspective, the current system depends on one worker remaining responsible for care for an unsustainable length of time, and limiting shifts is necessary to protect workers’ health, safety, and labor rights (New York City Council, 2026a).

Opposition has also come from disability advocates, home-care workers, and labor groups, including District Council 37. They argue that New York State regulates and funds much of the home-care system and that the city proposal does not provide the additional funding needed to divide a 24-hour assignment between workers. They have warned that changes made without enough workers or replacement coverage could interrupt care and place community living at risk. These are concerns raised by opponents of the bill rather than outcomes that have been established (District Council 37, 2026; Johnson, 2026).

The same system can carry different risks for workers and care recipients. Long shifts, inadequate rest, and concerns about unpaid time can wear down workers. Gaps in care can leave a person without help to eat, transfer, bathe, reposition, leave bed, or remain safely at home. The disagreement concerns whether the funding and staffing structure can protect both groups without transferring the system’s risks from one to the other.

A limit on working hours does not by itself create more workers or guarantee that another person will arrive when a shift ends. Any change would also have to address funding, recruitment, training, scheduling, continuity of care, and missed coverage.

Participation can help show where those plans may fail. Home-care workers understand the demands of providing assistance. People who receive care understand what happens when that assistance is late, unfamiliar, interrupted, or absent. Their knowledge is most useful before the main approach has been decided.

The home-care debate also shows why access cannot be measured only by whether a program exists or a service has been authorized. When remaining at home depends on government-funded or managed services, the question is whether those services can be obtained and used. Title II of the ADA prohibits state and local governments from excluding people with disabilities from public programs, services, and activities, including transportation, health care, and community-based supports (U.S. Department of Justice, n.d.).

In Olmstead v. L.C. (1999), the Supreme Court held that the unnecessary segregation of people with disabilities may violate Title II. Gaps in community-based services can shape where a person is able to live. A shortage of qualified providers, inaccessible medical equipment, a delayed wheelchair repair, or uncertainty about which agency is responsible can increase the risk that a person will have no practical alternative to a more restrictive setting. A service may appear in policy or in an administrative record while remaining unavailable in practice.

Community placement under Olmstead depends on whether it is appropriate, whether the person does not oppose it, and whether it can be provided in light of state resources and the needs of others who rely on disability services (Olmstead v. L.C., 1999). These considerations involve more than technical judgments. They also raise questions about which needs are recognized, which barriers are treated as urgent, and who has influence over those decisions.

Participation is therefore part of access. People with disabilities need a role not only in identifying barriers but also in shaping how services are designed, coordinated, and delivered. Their experience may reveal whether a problem lies in funding, implementation, provider capacity, accessibility, or divided responsibility—distinctions that official records often miss.

Living at home also depends on reliable personal assistance, accessible transportation and health care, working equipment, and clear information. Although government programs often manage these supports separately, they intersect. A broken wheelchair may prevent someone from leaving home, an inaccessible medical office may place routine care out of reach, and a missed home-care shift may affect whether someone can get out of bed or remain safely at home.

Mr. Johnson’s statement that “limiting choices limits existence” reflects these practical limits (Johnson, 2026). Yet the number of options alone does not establish access. A provider directory may list several names even though none can provide the required service. An accessible transit route may add hours to a trip. A meeting may offer several ways to participate while none accommodates a person’s communication needs or technology.

Ultimately, access must be evaluated in practical terms. Can a person obtain the service and depend on it? Can they participate while decisions are still being shaped, and can their input affect the result?

A service may be funded, a meeting held, or a plan approved while the official record says little about whether a person could actually use the service or influence the outcome. The ADA created stronger legal protections against exclusion, but practical access continues to depend on budgets, staffing, coordination, timelines, and decisions made long before a final plan is announced. Formal compliance matters, but it does not necessarily show how a system works for the people who rely on it.

Thirty-six years after the ADA, the remaining gap can be seen in whether care is available, whether public spaces and services can be used reliably, and whether participation occurs early enough to shape decisions. Formal access is an essential starting point, but its significance depends on people’s actual experience of the system.

Access is strongest when services are dependable, participation has a meaningful role in shaping outcomes, and people with disabilities are not left to carry the primary burden of making inclusion effective.

References

Author’s Note

This essay considers access, inclusion, and participation through selected examples involving transportation, health care, home care, and public decision-making. Legislative status and implementation timelines were reviewed as of July 16, 2026, but may change. References to court decisions, proposed legislation, and settlement terms focus on the portions most relevant to the discussion.

The Trouble With What Used to Work

Looking back can be useful because distance sometimes reveals the beginning of a change, the importance of a decision, or the meaning of an experience that seemed unclear at the time. What once seemed routine may look different in retrospect. The preparation becomes more visible, and a decision that seemed minor may turn out to have influenced the choices that followed.

Memory can place events in context, but it can also distort them. Time removes certain details and sharpens others. The past may be remembered through a particular ability, relationship, routine, or expectation. The inconveniences surrounding that period may fade, and the strain may become less distinct, allowing the past to appear more stable than it actually was.

For a person with a disability, looking back may involve comparing past and present abilities and expectations. Memory may preserve the ease of a familiar activity while overlooking the point at which the same routine began to require more effort.

The past may explain why a routine made sense at the time, but it can also create expectations. What worked before may continue to shape expectations even after circumstances have changed.

Earlier Measures

A person may remember steadier balance or a time when tasks required less calculation. Those memories may come from life before an injury, diagnosis, surgery, or gradual change in function. A disability present since birth can also change over time. Age, responsibilities, surroundings, and daily routines can affect which strategies remain useful.

Daily demands influence what a person can reasonably manage. Work schedules, medical appointments, errands, and household responsibilities may reduce the time, energy, or flexibility available. As a result, an activity may need to be completed differently.

In my experience, the effects of change became more apparent after nerve transposition surgery. The procedure moves a compressed nerve to relieve pressure and reduce the risk of further damage. After surgery, tasks that had once been easy required more planning and effort. Familiar routines also became less effective and sometimes had to be reconsidered.

A task often becomes routine because the same steps, tools, and preparation have worked before. That routine may continue even as balance, coordination, strength, or other abilities change. The entire task may not be the problem. Sometimes only one part has become more difficult while the rest still works well.

Adaptation begins by identifying the exact point at which an activity has become difficult. Gathering supplies before starting, sitting for part of the activity, carrying fewer items, placing frequently used objects within easier reach, or accepting help with one step may be enough to preserve the routine. Small, specific changes can reduce effort and keep an activity from becoming unnecessarily out of reach.

Memory can make the need for adjustment harder to recognize. It may preserve the fact that something was completed while leaving out the additional preparation, extra steps, or effort involved. Looking back more carefully can reveal when a routine began to demand more than it once did.

Reconsidering the Usual Routine

Meals still need to be prepared, appointments still need to be kept, and household responsibilities still need attention. The way each one is handled may need to change.

A familiar method can create expectations about how quickly a task should be completed, how much should be carried, or whether help should be necessary. When part of the task becomes harder, choosing a different approach does not mean the original method was wrong. It simply reflects a change in circumstances.

The way a task is completed may begin to shift before the need for change is fully recognized. More time is required, certain steps are avoided, and small adjustments gradually become necessary. Eventually, those changes may signal that the overall approach should be reconsidered.

Looking back can make this pattern easier to see. It may reveal when a task began to require more preparation or when several small adjustments gradually became necessary. Recognizing that progression can help identify which parts of the task need to change.

A routine may still work as it is, may need one adjustment, or may need to be replaced. Looking back can explain why it began and why it continued, but the past does not have to determine what happens next.

What becomes possible when the way something has always been done is no longer treated as the only way?

Beyond the Flag: Thinking About Disability Pride

Every July, the same question returns. It has surprisingly little to do with disability itself. Instead, it centers on a single word: pride.

Disability Pride Month commemorates the signing of the Americans with Disabilities Act on July 26, 1990, while advancing the goals of the disability rights movement. It asks people with disabilities to embrace their identities, and it reminds everyone else that barriers usually come from attitudes, policies, and environments rather than from disability itself.

The conversation does not stop there. It also asks how we talk about disability at all. Some people prefer identity-first language, calling themselves a disabled person, because disability feels inseparable from who they are. Others prefer person-first language, saying a person with a disability, because they see disability as one part of an identity rather than its defining feature.

This essay uses person-first language, while recognizing that thoughtful people land in different places on this question. That disagreement is itself worth noticing, because it suggests disability resists simple description long before the conversation ever reaches the word pride.

The Question of Pride

The purpose of Disability Pride Month is difficult to dispute. The word pride, however, is more complex, and the more closely it is examined, the more questions it invites.

Disability is not a single experience. For many people, it is central to identity and community, and pride becomes a rejection of centuries of exclusion, institutionalization, pity, and discrimination. It insists that disability is neither shameful nor diminishing.

Others relate to disability differently. Some see it primarily as a medical condition, while others see it as only one part of a fuller life, and no single view represents everyone. Someone living with chronic pain, or with a progressive neurological disease, may not feel pride in the condition itself.

Their relationship with disability may shift from day to day. Some days it recedes into the background; on others it demands nearly all of their attention. Given the choice, many would leave the illness behind entirely, without ever questioning their own worth or the dignity of people with disabilities more broadly. These views are not contradictions. They simply do not fit neatly within a single word, and that complexity is part of what keeps the conversation alive.

That tension is why Disability Pride Month generates conversation not only outside the disability community, but within it as well.

Why Pride?

History explains the word, even if it does not settle the argument surrounding it.

The ADA, signed into law in 1990, reshaped disability rights in the United States by prohibiting discrimination in employment, transportation, public accommodations, and much of public life (Americans with Disabilities Act of 1990, 1990).

It followed years of activism, much of it organized by ADAPT, including the now-famous Capitol Crawl, where disability rights advocates left their wheelchairs at the foot of the U.S. Capitol and pulled themselves up the steps to demonstrate what inaccessible public spaces demanded of the bodies of people with disabilities (Hamraie, 2017).

The activism did not end when the ADA passed. It laid the groundwork for what came next: the observances that would eventually become Disability Pride Month. At its core, the observance sought to challenge longstanding stigma while affirming that disability belongs in public life rather than being hidden from it.

Boston held the first Disability Pride Day in 1990, Chicago organized the first major parade in 2004, and the observance gained broader national recognition during the ADA’s twenty-fifth anniversary in 2015 (New America, 2025). Seen in that light, the choice of pride is understandable. It was intended as an answer to generations of stigma.

Not One Voice

People with disabilities bring different experiences and perspectives to Disability Pride Month, and those differences naturally shape how they understand its purpose.

For many, the word pride rejects generations of stigma and affirms that disability is not something to be hidden or diminished. Others appreciate those goals while questioning whether celebration fully captures lives that may also involve pain, uncertainty, or ongoing medical challenges.

Those differing perspectives became more visible during recent debates over Medicaid and disability services. Amid concerns about proposed funding changes and their potential impact on healthcare and independent living, some advocates remarked that “Disability Rage Month” felt more reflective of their experiences than Disability Pride Month.

The phrase was less a rejection of the observance itself than an expression of the frustration and uncertainty many were feeling as public policy directly affected their lives. The conversation also changes across cultural and economic contexts.

Disability scholar Helen Meekosha argued that the concept of disability pride developed largely within affluent Western societies, where legal protections and accessibility had reached a certain level of maturity (Meekosha, 2011). In many parts of the Global South, where disability is often compounded by poverty, conflict, preventable illness, and limited healthcare, celebration may carry different meanings. The same word can evoke very different experiences depending on where—and how—people live.

What Are We Celebrating?

Another question follows the first: what exactly is being celebrated?

Stella Young offered one answer when she coined the term inspiration porn, describing the tendency to portray people with disabilities as inspirational simply because they were living ordinary lives.

The emotional reward, she argued, rarely belonged to the person with a disability; it belonged instead to the observer without one, who left feeling grateful for their own circumstances (Young, 2014). Jan Grue later described the same pattern as disability staged primarily for someone else’s emotional benefit (Grue, 2016). That distinction is worth sitting with, because recognition is not the same as understanding, and admiration is not the same as inclusion.

At the same time, moving beyond simplistic narratives about disability does not require replacing one extreme with another. For most people, disability is neither wholly tragic nor wholly affirming, but something more complex than either account suggests.

Celebration raises awareness and builds community, but it can also become a way of avoiding harder conversations about employment, healthcare, education, housing, and the ordinary shape of daily participation. More than one in four U.S. adults live with a disability, making people with disabilities the nation’s largest minority group (Centers for Disease Control and Prevention, 2025), and despite decades of legislative progress, disparities in employment and poverty persist (U.S. Bureau of Labor Statistics, 2025; Erickson et al., 2025). Visibility alone has never been enough to close that gap.

Even that inequality has more than one layer. Albrecht and Devlieger (1999) described what they called the disability paradox, finding that many people with significant disabilities reported a good or excellent quality of life even as people without disabilities assumed the opposite.

Their findings challenge an old assumption, that disability must equal tragedy, and they remind readers that disability cannot be fully understood from the outside alone. That may be the lesson worth carrying through July.

Looking Beyond the Flag

Disability Pride Month does not need unanimous agreement to matter. Its value may lie elsewhere, in the conversations it makes room for, conversations that rarely happen during the other eleven months of the year.

Those conversations are uncomfortable because disability resists a single story. It can be identity, diagnosis, culture, limitation, resilience, grief, frustration, community, adaptation, or simply ordinary daily life. For many people, it is several, or even all, of these at once, sometimes within the same week.

Maybe the more interesting question is not whether the month has settled on exactly the right word. It is whether we are willing to make room for experiences of disability that are varied, sometimes contradictory, and always personal. No single description was ever going to capture all of it.

Disability Pride Month may do its best work not by answering questions, but by asking better ones. Perhaps the most important questions to carry beyond July are these: Are we willing to make room for disability in all its complexity? Can we accept that it refuses to fit a single definition?

References and Recommended Reading

    The Decisions No One Sees

    Several weeks ago, I underwent ulnar nerve transposition surgery after the ulnar nerve in my left arm was compressed at my elbow. To relieve the pressure and prevent further damage, the surgeon moved the nerve from behind my elbow to a new position in front of it.

    For several weeks, nothing involving my left arm happened without a conscious decision. Simple movements stopped being automatic. Opening a door meant deciding how to pull it. Lifting a pan from the stove meant thinking about where to place my hand.

    Carrying laundry meant deciding whether it could wait or whether there was another way to do it. Ordinary tasks became a series of deliberate decisions rather than the automatic routines I had taken for granted.

    As recovery progressed, those choices gradually faded into routine again. Once they no longer required conscious effort, a deeper question emerged: if so many decisions become routine, what does it really mean to be independent?

    Conversations about disability often center on independence, yet the word itself is rarely defined. Understanding the concept requires distinguishing independence from self-sufficiency. Although the terms are often used interchangeably, they are not the same.

    Self-sufficiency focuses on meeting one’s own needs with minimal assistance from others. Independence focuses on making decisions about one’s own life. The emphasis is not on performing every task without assistance but on retaining the ability to make those decisions for oneself.

    Although the distinction may seem subtle, it changes the way disability is often discussed. Independence is often measured by the amount of assistance a person receives. As supports decrease, the assumption is that independence has increased. Sometimes that is true. Sometimes what has increased is self-sufficiency.

    Recovery reminded me that living with a disability often begins with decisions most people never have to think about. For many people with disabilities, the first decision is what can realistically be taken on. What has to be done? What can wait? Accepting an invitation may mean postponing something else. Saying yes to one commitment may mean declining another. Plans often have to be adjusted as circumstances change.

    Not every decision is about time. Some involve disclosure. Is this the right moment to mention a disability, or is the conversation unlikely to change anything? Others involve deciding whether to request an accommodation or find another way to accomplish the same goal. Sometimes the wisest decision is not to push through at all. Made day after day, these choices gradually become routine.

    Maintaining independence requires work that is largely invisible to everyone else. What others notice is someone arriving at work, giving a presentation, volunteering, or enjoying a family gathering. What remains unseen is the ongoing planning, decisions, adjustments, and tradeoffs that make those moments possible. As a result, independence is often judged by what people accomplish rather than by the effort required to participate in the first place.

    Participation is often built on dozens of decisions made long before anyone else notices the outcome. The better those decisions work, the less likely anyone is to notice they were ever made.

    Perhaps independence is not defined solely by what a person accomplishes without assistance. Rather, it is measured by the freedom to make one’s own choices and direct one’s own life, even when those choices remain invisible to others.

    Several weeks after surgery, opening a door no longer requires a conscious decision. It has become routine again. That may be the paradox of independence: the more successfully it is exercised, the less anyone notices it.

    Its clearest evidence is often its invisibility.

    A Different Language

    By Kerry A. Wiley

    The smallest changes are not always the smallest.

    It began

    with a simple revision.

    Only the office,

    only the letterhead,

    only the hallway

    where the paperwork sleeps.

    The child

    remains.

    Only the room

    that claims them

    begins

    to speak

    a different language.

    And yet

    A doorway

    does not decide

    who belongs.

    What changes

    is not always

    what is visible.

    Sometimes

    it is the meaning

    of the room.

    Language

    is never

    only language.

    It begins

    with the first name.

    The first name

    is rarely

    the last.

    Some names

    become

    windows.

    Others

    learn

    to be walls.

    Silence,

    too,

    has its vocabulary.

    A room

    can open

    without widening.

    It can narrow

    without moving

    an inch.

    Institutions

    move quietly.

    They rarely

    announce

    what belongs

    or

    what remains.

    Only

    the title.

    The signature.

    The department.

    The address.

    There was

    no single

    crossing.

    Only

    the room

    mistaking

    its echo

    for its voice.

    Before the Doors Opened

    Several years ago, I attended a community event.

    Like most people attending, I arrived shortly before it started. Conversations had already begun by the time I found a seat. Materials were laid out on tables near the entrance, and a schedule for the day waited inside a folder placed at each chair.

    The event unfolded as planned. Presentations stayed on schedule, discussions continued during breaks, and people lingered afterward to finish conversations that had started earlier in the day. By late afternoon, everyone gathered their belongings and headed home.

    Like most attendees, I left thinking about the conversations and presentations from the day. The planning that had gone into the event never crossed my mind.

    Years later, after becoming involved in organizing events and community projects, those memories began to look a little different. What once appeared effortless rarely was.

    Behind every meeting, conference, or community gathering were hours of planning, coordination, and problem-solving. Schedules changed. Details had to be adjusted. Unexpected challenges appeared and required attention.

    Much of that work happened long before the first attendee arrived and continued long after the last person left. Most people never saw any of it. There was no reason they should. The purpose of the work was not to be noticed. The purpose was to create an experience that allowed everyone else to focus on why they were there.

    Over time, that realization began to connect with experiences from other parts of my life.

    Growing up, I rarely thought about why certain things worked. If a classroom was moved, it was simply the classroom where we met. If an activity needed to be adapted, it was simply the way the activity was done. If transportation had to be arranged differently, it was just part of the day.

    Looking back, it is easier to recognize what was happening behind those moments. My parents spent years navigating situations I barely noticed at the time. Phone calls were made before a new school year began. Meetings were scheduled. Questions about accessibility, transportation, and participation were discussed long before I ever entered the room. Many of those conversations happened without me knowing they had taken place. By the time I arrived, a plan was often already in place.

    Teachers often did the same. Sometimes a classroom location changed. Sometimes an assignment was modified. Sometimes a field trip required additional planning. As a student, those adjustments were simply part of the school day. What I rarely saw were the discussions that took place beforehand and the time spent making sure I could participate alongside everyone else.

    As the years passed, I began to notice the same thing in community organizations and advocacy work. An event appeared on the calendar, but someone had already spent months organizing it. A speaker took the stage, but someone had coordinated schedules, arranged logistics, and solved problems behind the scenes. Programs existed because volunteers invested evenings, weekends, and countless hours long before anyone benefited from the final result.

    Most participants experienced the finished product. What remained largely invisible was everything that led to it: the ideas, planning, problem-solving, and conversations that transformed a challenge into a solution.

    The older I get, the more I see this pattern repeated elsewhere. People usually remember the outcome, not the work that made it possible. The details behind success are easy to miss, perhaps because the best efforts often make difficult things look simple. When something works as intended, attention naturally shifts to the result, while the countless decisions, adjustments, and unseen hours behind it fade into the background.

    Looking back, many of the opportunities and experiences that shaped my life have something in common. Parents, teachers, family members, advocates, volunteers, and others spent time working through details I rarely noticed at the time.

    The solution was visible. The thought, planning, and conversations behind it usually were not. Only later did I realize how many doors had already been opened before I ever walked through them.

    Another Way

    Last year brought me to Italy. Sitting at cafés watching crowds of people pass by and wandering through villages and cities I had only read about, it was difficult not to think about the path that had brought me there. The streets were narrower than I imagined. The buildings were older than anything I was used to seeing.

    Italy gave me time to reflect.

    At home, I rely on walking poles. Italy presented different challenges. Cobblestone streets, uneven surfaces, and the realities of navigating unfamiliar places required a different approach. My brothers pushed me through cities, villages, museums, and public squares, determined that I would experience Italy, not simply visit it.

    During that trip, I was reminded of something I had known for most of my life. My brothers never spent much time dwelling on what could not be done. Their attention was usually on the solution rather than the obstacle. Pushing a wheelchair through crowded streets in Italy was simply another example of a lesson they had been teaching me my entire life.

    This June, I turn 51.

    Looking back, it is clear how much I learned from the example set by my family and how much of my life reflects it. Growing up with two siblings meant living in a home where challenges were met with the belief that there was always another way. Challenges were acknowledged, but they were rarely allowed to define what came next. When problems arose, my parents, brothers, and I looked for another way. Difficult circumstances were approached with the expectation that somehow, some way, we would figure things out.

    That mindset became part of who I am.

    Disability was part of my life, but it was never treated as a reason to lower expectations. My family recognized the realities that came with it, yet they never allowed those realities to become the focus of my life. Expectations remained expectations. I was encouraged to participate, contribute, try things, and find my own way. If one path proved difficult, another could often be found.

    Looking back now, I understand what a gift that was.

    The beliefs that shaped our home never really left. They followed me into school, work, and experiences I never imagined as a child. They showed up in the choices I made, the risks I was willing to take, and eventually in a trip to Italy.

    Fifty was a good year. Italy was part of it.

    What stays with me most, though, is the reminder of who helped make those experiences possible.

    To my family: Thank you for always helping me find another way.

    — KAW

    What the Education Department’s Latest Changes Mean for Students With Disabilities

    The U.S. Department of Education has announced changes that will shift some special education and civil rights responsibilities to other federal agencies. Federal officials say the legal protections available to students with disabilities will remain unchanged, but the agencies responsible for administering some of those programs and investigating certain complaints will not.

    Under newly signed interagency agreements, many administrative functions related to special education will move to the Department of Health and Human Services (HHS), while some civil rights investigation and enforcement activities will shift to the Department of Justice.

    The changes are particularly significant because they involve programs governed by the Individuals with Disabilities Education Act, known as IDEA. The federal law is intended to ensure that eligible students with disabilities have access to a free and appropriate public education. IDEA serves millions of students across the country and provides early intervention services for infants and toddlers with developmental delays and disabilities.

    The announcement has drawn significant attention because IDEA affects millions of students with disabilities and their families. Much of the discussion has focused on how responsibilities will be divided among federal agencies and how the transition will affect the administration and oversight of special education programs.

    Under the agreements, HHS is expected to oversee the administration of IDEA grants, review whether states are complying with federal requirements, monitor the implementation of special education programs, investigate and address compliance issues, and assess state performance each year.

    The Department of Education’s Office of Special Education and Rehabilitative Services (OSERS) will continue to develop policy, provide technical assistance and guidance to states and school districts, and conduct outreach to families, educators, and advocacy groups.

    Federal officials say the changes are intended to improve coordination among agencies that serve people with disabilities and simplify the administration of related programs. They point to programs such as Head Start, which already works closely with school districts and serves children with disabilities. Bringing related responsibilities together, they say, could improve coordination among programs serving many of the same families.

    Supporters also argue that consolidating related responsibilities will likely reduce administrative barriers and make it easier for families to navigate services.

    Others have raised concerns about moving responsibilities away from the Department of Education. Some disability rights advocates and educators believe special education programs are best administered within a single agency focused on education, while supporters of the changes believe the new arrangement could improve coordination among federal programs serving people with disabilities.

    Students with disabilities are also protected under two federal laws. Section 504 of the Rehabilitation Act of 1973 prohibits disability-based discrimination and requires schools to provide accommodations and supports that enable students with disabilities to participate in educational programs and activities. The Americans with Disabilities Act (ADA) provides broader civil rights protections for individuals with disabilities in schools and other public settings.

    The reorganization extends beyond special education administration and also affects federal civil rights enforcement.

    Under separate agreements, the Department of Justice will assume responsibility for certain complaint investigations and resolution processes previously handled by the Department of Education’s Office for Civil Rights. These include complaints involving alleged violations of federal civil rights laws in schools. Although the Department of Education will retain its statutory authority over these functions, some investigative and enforcement responsibilities will be carried out by Department of Justice personnel.

    Supporters note that the Department of Justice already enforces many federal civil rights laws and has extensive experience handling discrimination complaints. Critics argue that education-related civil rights matters are best addressed within the Department of Education because of its specialized expertise in schools and educational programs.

    For schools and families, the immediate effects remain uncertain. While the Department of Education has said services will continue and that existing funding and legal requirements remain in place, questions remain about how the changes will affect the administration and oversight of these programs over time.

    Schools continue to be responsible for meeting the requirements of IDEA, Section 504, and the Americans with Disabilities Act, including providing eligible students with required services and accommodations.

    The reorganization is intended to improve coordination among agencies serving individuals with disabilities while maintaining existing services, funding, and legal protections.

    Supporters contend that bringing related responsibilities under a more unified structure could enhance collaboration among federal programs that often support the same children and families. Critics, however, argue that special education and school-based civil rights enforcement are best administered within the Department of Education, citing its specialized expertise in educational policy, school systems, and student support services.

    As responsibilities shift among agencies, educators, advocates, and families will be looking for answers to practical questions: How will the agencies coordinate their efforts? How will oversight and enforcement responsibilities be carried out under the new structure? And what effect, if any, will the changes have on the services and protections students receive?

    For parents, educators, and advocates, these questions extend beyond government agencies and administrative oversight. The answers are found in classrooms, early intervention programs, and, most importantly, in the lived experiences of students and their families.

    As the transition moves forward, many will be watching not only how responsibilities are reassigned, but how effectively the system continues to serve the children it was created to support.