The ADA at 36: How Far Does Access Reach?

The promise of the Americans with Disabilities Act (ADA) is reflected in ordinary places. It can be seen in an accessible entrance, a government website that works with a screen reader, or medical equipment that allows a patient to receive a complete examination. These features may appear routine today, yet each represents a change in how access is understood and provided.

Their absence is equally instructive. A person using a wheelchair may arrive for a dinner reservation and find a step at the only public entrance, while another person may be unable to complete an important form online. A patient may enter an accessible medical office only to discover that the examination table cannot be used safely.

In each situation, the ADA provides a legal framework for addressing the problem. However, the person affected may still need to ask for assistance, explain the barrier, identify an alternative, or file a complaint. Thirty-six years after the ADA became law, its achievements are visible, but access remains less consistent than the law’s broader goals suggest.

The ADA changed how disability rights were recognized in the United States. Signed into law on July 26, 1990, it established protections against disability discrimination in employment, state and local government services, transportation, public accommodations, telecommunications, and other areas of public life (Americans with Disabilities Act of 1990, 1990). It placed disability more firmly within federal civil rights law and encouraged a broader understanding of access as a public responsibility.

The ADA has changed many aspects of public life. Buildings and transportation systems have become more accessible, while employers are required to prevent disability discrimination and provide reasonable accommodations. People with disabilities have also gained legal tools to challenge exclusion. The law has helped reshape expectations about the participation of people with disabilities in workplaces, schools, businesses, government programs, and the community.

These changes deserve recognition. At the same time, the remaining gaps offer an opportunity to consider how the law operates in practice and where additional work may be needed. The question is not whether the ADA made a difference, but how its protections can become more consistent, timely, and dependable.

Moving From Barriers to Access

Much of the ADA’s enforcement structure responds to problems after they occur. Enforcement agencies often learn about a barrier only after a person has encountered it and submitted a complaint. By then, the individual may have missed an appointment, been unable to enter a business, lacked access to important information, or faced discrimination in the workplace.

Several federal agencies share responsibility for enforcing the ADA. The U.S. Department of Justice addresses many complaints involving state and local government services and public accommodations. The Equal Employment Opportunity Commission investigates employment discrimination complaints. Transportation-related complaints may fall under the U.S. Department of Transportation or another federal agency, depending on the service involved and the nature of the complaint (U.S. Department of Justice, n.d.-a).

The ADA’s broad reach requires several agencies to share enforcement responsibilities. As a result, filing a complaint may involve determining which part of the law applies and identifying the appropriate agency. A person may also need to document what occurred and describe the action needed to address the concern. For someone unfamiliar with the law, navigating this process can take time and may require assistance.

Individual complaints can bring specific accessibility barriers to light, prompt organizations to address them, and improve access for others. However, pursuing a complaint often requires time, energy, resources, and an understanding of the legal process that not everyone has.

As a result, some barriers may never be reported. This does not necessarily reflect an intent to exclude, but it may show that an organization relies too heavily on individuals to identify accessibility problems. Regular accessibility reviews can uncover concerns sooner, support timely corrections, and reduce the burden on individuals to initiate enforcement.

The Evolving Standards for Physical Access

The ADA did not require every existing building to be reconstructed when the law took effect. Under Title III, which covers many private businesses and nonprofit organizations serving the public, barriers in existing facilities must be removed when removal is “readily achievable.” This means the work can be completed without much difficulty or expense, considering the organization’s size, resources, and circumstances (U.S. Department of Justice, 2011).

There is a clear rationale for this standard. A small independent business does not have the same resources as a national corporation, and some structural changes are far more difficult or costly than others. The standard accounts for those differences but does not eliminate responsibility. Businesses must continue to consider whether existing barriers can be removed.

As a result, accessibility improvements in older facilities may occur over time. A business might begin with less costly changes. These facilities may undertake more complex work as resources become available or renovations are planned. Yet, for someone who cannot enter the building, use the restroom, or reach the service counter, access is not a future concern. The barrier affects them now.

Private enforcement under Title III focuses primarily on correcting violations. Individuals may generally ask a court to order a business or organization to remove an access barrier or otherwise comply with the law. The federal ADA typically does not permit private plaintiffs to recover compensatory damages under Title III, although state and local laws may provide additional remedies (Americans with Disabilities Act of 1990, 1990; Acheson Hotels, LLC v. Laufer, 2023).

A court order can produce meaningful improvements for future visitors. It may result in an accessible entrance, a policy change, or another modification that had not previously been made. At the same time, it cannot restore an appointment, gathering, meal, or service that someone was unable to use.

The current response and remedy can improve access going forward, even when it does not fully address what a person has already experienced. Earlier accessibility reviews can help organizations identify and correct barriers before legal action becomes necessary.

Getting There Is Part of Access

Physical access extends beyond the building itself. A destination may meet applicable standards but still be difficult or impossible to reach. A broken sidewalk or missing curb ramp can block the route, while an inaccessible transit stop may prevent a person from reaching the area at all. People who are blind or have low vision may face additional barriers when pedestrian signals do not provide usable information. Addressing these barriers often requires several public systems and property owners to work together.

Public rights-of-way are the outdoor spaces people use to move through a community, including sidewalks, street crossings, pedestrian signals, and transit stops.

In December 2024, the U.S. Department of Transportation adopted new accessibility requirements for transit stops that are built or renovated along public streets and sidewalks. The standards cover pedestrian routes, curb ramps, detectable warning surfaces, accessible pedestrian signals, and other features that support safe, independent access (U.S. Access Board, 2024a).

Their adoption marked important progress, but new construction and alterations represent only part of the public environment. Older sidewalks, crossings, and transit stops are often improved over time, as individual projects are funded, planned, and completed. As a result, accessibility may vary considerably within the same neighborhood.

One intersection may have accessible signals and well-designed curb ramps, while the next remains difficult to navigate. That inconsistency can prevent someone from getting to work, attending an appointment, visiting a business, or reaching a government office. An accessible destination is of little value if a barrier along the way makes it impossible to reach.

Accessible transportation requires more than well-designed vehicles, stations, and stops. Lifts must work, stop announcements must be clear, passengers must have enough time to board safely, and paratransit must arrive as scheduled. A failure at any point can prevent someone from reaching work, school, a medical appointment, or a community event. Accessibility depends on the entire transportation system working consistently.

What Workplace Protection Looks Like

Employment provides another clear example of the ADA’s impact. Title I requires covered employers to provide qualified individuals with disabilities equal access to employment opportunities and reasonable accommodations. A reasonable accommodation is a change to the workplace or the way a job is performed that provides this access.

For example, allowing an employee with a mobility disability to work in an accessible first-floor office may be reasonable. In contrast, installing an elevator in a small, older building could constitute an undue hardship if the cost would place a significant burden on the business. Whether an accommodation creates an undue hardship depends on factors such as its cost and the employer’s size and resources (U.S. Equal Employment Opportunity Commission, n.d.-a). In this way, the standards consider both the employee’s need for access and the employer’s circumstances.

However, these protections do not reach every workplace. Title I generally applies to private employers and state and local government employers with at least 15 employees, as well as employment agencies, labor organizations, and labor-management committees. Employees of smaller private businesses are not covered by Title I, although state or local laws may provide protection (U.S. Equal Employment Opportunity Commission, n.d.-b).

Even when the law applies, obtaining an accommodation can take time. An employer may request documentation, consider several possible accommodations, or discuss which option would be effective. A clear and timely process can help ensure that these steps do not leave an employee working for an extended period without needed support.

Employment data show that substantial differences remain. In 2025, 38.1 percent of people with disabilities between the ages of 16 and 64 were employed, compared with 74.8 percent of people without disabilities in the same age range. Among people age 16 and older, the unemployment rate was 8.3 percent for people with disabilities and 4.1 percent for people without disabilities (U.S. Bureau of Labor Statistics, 2026).

These figures should be interpreted with care. Age, health, education, transportation, benefit rules, available support, and labor-force participation can all affect employment. The Bureau of Labor Statistics also cautioned that its 2025 annual estimates were based on 11 months because October data were not collected during the federal government shutdown (U.S. Bureau of Labor Statistics, 2026).

Even with that context, the employment difference remains substantial. Across all age groups reported by the Bureau of Labor Statistics, people with disabilities were less likely to be employed. Workers with disabilities were also more likely to work part time and less likely to hold management, professional, and related positions.

Federal enforcement activity provides another view of disability-related workplace concerns. In fiscal year 2025,2025, the Equal Employment Opportunity Commission filed 35 disability-related lawsuits. Of those cases, 24 involved reasonable accommodations, 21 involved termination, and nine involved hiring practices (U.S. Equal Employment Opportunity Commission, 2026).

These figures do not reflect every workplace concern. They include only the cases the agency chose to pursue through litigation that year. Even so, the issues raised suggest an ongoing need for clear workplace procedures, effective training, and continued attention to accommodations, hiring, and job retention.

Beyond the Accessible Entrance

Medical and health care settings provide another clear example of the difference between entering a facility and being able to use the services offered there. A medical office may have accessible parking, a ramp, and a wide entrance but still lack equipment that a patient with a mobility disability can use. An examination table may be too high for a safe transfer, a scale may not accommodate a wheelchair, or imaging equipment may require a position the patient cannot maintain.

These barriers can affect the quality of care a patient receives. Without accessible equipment, a patient may receive an incomplete examination or be asked to describe symptoms that would ordinarily be evaluated directly. Staff may estimate measurements, omit parts of the examination, or refer the patient to another location, delaying care and requiring an additional appointment.

Medical diagnostic equipment includes examination tables and chairs, weight scales, mammography equipment, and other devices used to examine or measure patients. In 2024, the Department of Justice adopted accessibility standards for medical diagnostic equipment used by state and local government entities under Title II of the ADA. The standards address transfer surfaces, patient supports, compatibility with lift equipment, and wheelchair-accessible scales (U.S. Access Board, 2024b).

These standards provide greater detail about what equal access to health care services requires. They also reinforce an important point: an accessible building does not necessarily guarantee an accessible examination. Equipment, staff procedures, communication, and the physical environment must work together.

A patient must be able to do more than enter a medical office. The patient must also be able to receive an examination that is as complete and accurate as the examination provided to others. Continued attention to accessible medical equipment can help close the gap between entering a facility and receiving complete and appropriate care..

Access in a Digital World


The ADA was enacted before websites, mobile applications, telehealth platforms, and online job portals became widely used. As public services moved online, existing civil rights requirements had to be applied to technology that continued to change. This created new questions about how established protections should operate in digital spaces.

In 2024, the Department of Justice issued a final rule establishing specific requirements for web content and mobile applications provided by state and local governments under Title II. The rule generally requires covered content to meet the Web Content Accessibility Guidelines 2.1 at Level AA, subject to stated exceptions. Known as WCAG, these guidelines address keyboard navigation, text alternatives for images, captions, color contrast, headings, and compatibility with assistive technology (U.S. Department of Justice, 2024).

In 2026, the Department extended the compliance dates. State and local government entities serving populations of at least 50,000 now have until April 26, 2027. Smaller public entities and special district governments have until April 26, 2028 (U.S. Department of Justice, 2026).

Updating extensive collections of government documents, websites, and applications takes time. The process may require several departments to coordinate their efforts, outdated technology to be replaced, outside vendors to complete specialized work, and thousands of files to be reviewed. Even so, people with disabilities continue to need access to public information and services while these updates are underway.

A person who cannot use an online service may have few practical alternatives. They may need to call during business hours, travel to an office, share personal information with another person, or wait for assistance. These options may provide access. However, they do not necessarily offer the same convenience, independence, or privacy available to other users.

Digital accessibility is not simply measured by whether an alternative exists. The quality of that access also matters. Online services can reach people across many communities at once. When a system is accessible, information and services become available to a wider public. When it contains an accessibility barrier, however, the effects can be just as widespread. A single design problem may prevent everyone who relies on a particular accessibility feature from using the service, regardless of where they live.

What It Means to Live in the Community


The ADA’s influence extends beyond individual accommodations. In Olmstead v. L.C., the U.S. Supreme Court ruled that unnecessarily separating people with disabilities from the community may violate Title II. The case involved Lois Curtis and Elaine Wilson, who remained in a state hospital even after professionals determined they could receive services in community-based settings (U.S. Department of Justice, n.d.-b).

The decision established what is commonly known as the ADA’s integration mandate. Under this principle, public services must be provided in the most integrated setting appropriate to each person’s needs. This generally means enabling people with disabilities to live, work, receive services, and participate in community life alongside people without disabilities, rather than being unnecessarily separated in institutions or disability-specific programs.

However, the mandate is not absolute. Community placement depends on professional assessment, the person’s wishes, and whether the placement can be reasonably accommodated in light of available resources and the needs of others receiving disability services (Olmstead v. L.C., 1999). These conditions have supported the expansion of community services while also leading to discussions about funding, waiting lists, service capacity, and implementation.

Living in the community involves more than moving from a segregated setting, such as a nursing home, psychiatric hospital, or group home, into a private home or apartment. It also depends on access to housing, transportation, healthcare, employment, personal assistance, and other services that work together to support daily life and meaningful participation in the community. When one system is unavailable or unreliable, the others may be more difficult to use.

This broader view connects the different parts of the ADA. Access is rarely determined by a single doorway, policy, or accommodation. It develops through several systems and through the relationships among them.

When Access Becomes Participation


Technical standards establish clear requirements, but meeting them individually does not always result in meaningful access. A building may have an accessible entrance that is difficult to find or routinely locked. A meeting may be held in an accessible room, yet its materials may remain unreadable. An employee may receive an accommodation but still be excluded from assignments that provide opportunities for advancement.

These concerns often develop when accessibility is considered after a building, policy, program, or technology has already been designed. The organization then responds to individual requests rather than examining whether the design itself could be improved. Earlier consideration may reduce the need for later corrections.

Being able to gain access does not always mean being able to participate. Access allows a person to enter a space, communicate, obtain information, or use a service. Participation allows that person to remain involved, make choices, influence decisions, and receive benefits comparable to those available to others.

difference becomes clear when government agencies seek input on proposed policies or programs. An agency may provide an accessible meeting link and allow written comments, giving people with disabilities a way to respond. However, if they are consulted only after most decisions have been made, their ability to affect the policy may be limited. Involving them during the early stages of development gives their experiences and recommendations a greater role in shaping the outcome.

Minimum standards create a measurable baseline for access. A website, for example, may meet technical requirements but still require a person using a screen reader to move through dozens of poorly labeled links before finding an application. Examining independence, privacy, usability, and participation reveals whether the service works in practice, not only whether it meets a checklist. The broader measure of access is whether a person can use the service without unnecessary barriers and participate in a way that meets their needs.

The Reach of One Civil Rights Law

The ADA works alongside other civil rights laws that protect people with disabilities. The Fair Housing Act covers access, reasonable accommodations, and certain accessibility requirements in housing. Section 504 of the Rehabilitation Act prohibits disability-based exclusion in federally funded programs. Additional laws apply in areas such as education, healthcare, voting, public benefits, and air travel.

These laws provide protections in many settings. However, determining which law or agency applies can be difficult when a concern involves several systems. A person may need housing, transportation, personal assistance, healthcare, and employment support at the same time, while each service has its own requirements, funding, and administrative process.

These protections promote access, but they cannot ensure that every needed service is available. Accessible housing must still be developed, personal assistance must be funded, and transportation systems need adequate resources to operate reliably. The laws are most effective when the services and infrastructure needed to benefit from their protections are also in place.

The options available when someone encounters a barrier may also depend on the support and flexibility they have. Some people may be able to seek legal advice, arrange private transportation, purchase accessible technology, or move to a more suitable home. Others may face the same barrier with fewer ways to address it.

This broader context does not lessen the importance of the ADA. It shows that the law operates alongside other protections, programs, and services. Its practical effect is strongest when these systems work together to support independence and participation.

Where the Work Goes Next

The ADA remains an important legal framework. It gives people with disabilities ways to address barriers and establishes standards for evaluating access. Acknowledging the work that remains does not diminish the law’s achievements. It clarifies where further action is needed.

That action can begin before someone encounters a barrier. Accessibility is more consistent when it is considered as facilities, technology, equipment, and services are selected or developed. Periodic reviews can identify problems that were overlooked or emerged over time. Clear accommodation procedures provide a consistent response when individual needs arise. Together, these efforts make accessibility part of regular planning and operations.

Planning, however, is only part of the measure. Counts of accessible entrances, staff trainings, adopted policies, and completed accommodation requests offer limited evidence of what people actually experience. A more meaningful assessment considers whether people with disabilities can retain employment, reach appointments, receive complete medical examinations, use transportation, and participate in public decisions.

Understanding those experiences requires the involvement of people with disabilities. Their perspectives can strengthen the design of policies, buildings, programs, and technology, particularly when they are included before decisions are final. Early participation can identify concerns, suggest alternatives, and reduce the need for later changes.

The ADA established disability access as a civil rights issue and led to changes in employment, public services, transportation, businesses, and telecommunications. Yet access continues to vary by location, technology, available resources, and a person’s ability to raise and pursue concerns. These differences do not erase the law’s accomplishments. They reveal where its protections remain incomplete and help define the work ahead.

The ADA created a foundation, but its strength depends on how consistently access is carried through the systems people rely on each day. If access depends on a person having the time, knowledge, and resources to demand it, how secure is that access? What is lost when compliance is measured without considering whether someone could participate fully? How might the meaning of inclusion change if accessibility began with anticipation rather than response?

The ADA’s promise will be measured by what happens before a barrier is encountered. Its work will remain unfinished until access is expected, planned for, and provided without someone first having to fight for it.

References

The Story of a Shoe

My feet are swollen, and my work shoes will not go on.

The laces hang loose on either side. Each tongue has been pulled forward and each opening stretched as wide as possible, but more room is not the answer. The swelling adds volume to my feet, but there is still space inside the shoes. Getting my feet there is the problem. Neither leg can lift high enough to clear the back of a shoe.

Even when my hands help close the remaining inches, stiffness in both ankles creates another obstacle. My feet cannot point forward and downward. Without that slight change in angle, my toes cannot enter first. They press against the edge instead. One shoe sits open beneath the first foot. The other waits beside it.

Spastic cerebral palsy originates in the brain, not the muscles. Cerebral palsy is caused by abnormal development of the brain or damage to the developing brain that affects a person’s ability to control movement, balance, posture, and muscles (Centers for Disease Control and Prevention [CDC], 2026; National Institute of Neurological Disorders and Stroke [NINDS], 2026).

With spastic cerebral palsy, increased muscle tone causes the muscles to remain stiff. The intention to move is clear, but the body cannot always coordinate the movement required to complete the task. Spasticity is an involuntary increase in muscle tone.

For me, it means that the muscles around my ankles can tighten against the movement I am trying to make. Pulling a foot harder or faster toward the shoe does not necessarily help. Instead of yielding so the foot can point, the muscles catch and hold it in place.

My ankles feel rigid, but “rigid” describes the experience of stiffness rather than a separate diagnosis. Increased muscle tone is a defining feature of spastic cerebral palsy, although its effects and severity vary from person to person (CDC, 2026; NINDS, 2026). In this room, that stiffness is visible in the locked angle of the ankle. The movement begins, the muscles tighten, and the toes press into the shoe rather than entering it.

The sequence itself is short: lift one foot, point the toes, and slide forward. Then repeat the process with the other foot. My mind understands each step, but the muscles do not.

A weighted band, used here as a lifting strap, is wrapped around my foot because two hands are being asked to do the work of three. One hand has to lift the leg and prevent it from slipping out of position. The other must hold the shoe open, place it beneath the foot, and push it on. Without the band, there is no secure way to maintain the lift while also controlling the shoe.

Wrapped firmly around my foot, the band creates a handle where none exists. Gripping its ends gives one hand enough leverage to raise the leg and keep the foot near the opening. That hand cannot let go. If it does, the leg drops and the position is lost. My other hand pulls the tongue forward, steadies the shoe, and works it over my toes.

Even with the band, the tasks compete. Pulling upward helps the foot clear the back of the shoe, but the shoe must also be held at the correct angle. Reaching farther for it can weaken the lift. Stabilizing the leg leaves only one hand to spread the opening and force the shoe forward. The band allows two hands to attempt the sequence, but it cannot supply the missing ankle movement. For a moment, the position looks right. Then the toes catch against the opening.

Height is only the first part of the problem. Once the foot reaches the shoe, the ankle must release enough to let the toes angle forward and slightly downward. That shift would allow the front of the foot to enter before the heel follows. Instead, spasticity holds the ankle stiff. The foot reaches the opening almost straight on and presses against the edge. Looser laces cannot correct the angle. A wider opening cannot release the ankle, although it may reduce the amount of ankle movement required to enter the shoe.

The foot is lowered, and the process begins again. This time, the shoe is brought closer. The shorter distance requires less lift, but it leaves little room to guide the toes downward. Moving the shoe farther away improves the angle while placing it beyond the height the leg can reach. Lowering it reduces the lift, yet the new position leaves no space for the foot to slide forward.

Each adjustment changes the problem without resolving it. The distance is visible, the angle exact, and the sequence familiar from years of repetition. Each foot must rise, turn, and move forward. Knowing where the motion breaks down, however, does not provide control over the muscles needed to complete it.

The distance between intention and movement can be difficult to explain. In my mind, both shoes are already on. Each foot has lifted, the toes have slipped inside, and the heels have settled into place. Yet my body lags behind the completed thought, held at the ankles by muscles too tight to complete the motion.

Another attempt begins. One hand grips the band and pulls upward while the leg strains to help. The other hand spreads the shoe open, guides it beneath the foot, and pushes forward. At the same time, the ankle must point and the foot must remain steady. Instead, the muscles tighten, the angle shifts, and the toes stop at the opening once more. Even if this shoe goes on, the entire process must be repeated on the other side.

By now, the shoes are no longer simply the final step in getting dressed. They are where the morning comes to a halt. My clothes are on and my plans are set, but moving forward depends on whether two swollen feet can clear the narrow openings and turn just enough to slide inside.

Once the shoes are on, no one will know what it took to get them there. No one will see the weighted band used to help lift each foot or know how many times the toes caught against the openings. The shoes will hide the stiffness and swelling, along with the effort behind an ordinary task.

The failed attempts leave little evidence. The calculations behind each change in position are just as difficult to see. After each attempt, I decide whether to lift my leg higher, change the angle of my foot, lower my heel, or widen the opening of the shoe. I loosen the band when it pulls too tightly and tighten it again when I need more support. Every adjustment is deliberate.

When the movement still will not come, trying harder is not the only response. The search has to expand until it includes an approach that fits the way my body moves. Different shoes may reduce the movement required, but my feet would still need to lift and point. Another person could help guide them, although assistance cannot release the muscles holding both ankles stiff. Waiting might allow the swelling to ease, but it would also change whatever had been planned for the day.

Adaptation begins with immediate choices, but it should not end there. A shoemaker may be able to widen the openings, alter the backs, or add closures that allow the shoes to open farther. Those changes would not release my ankles, but they might reduce the movement required to get each foot inside.

An occupational therapist, orthotist, rehabilitation specialist, or assistive technology professional may suggest a different way to position each leg or stabilize the feet. They may also identify a more manageable way to handle the shoes with only two hands. The best solution could involve modified footwear, a different tool, a new technique, or a combination of approaches that has not yet been considered.

No single adaptation works for every body, or even for the same body every day. Swelling changes. Muscle tone changes. The two sides may not respond in the same way. A method that works for one foot may fail on the other because the angle, resistance, or available movement is different. Finding a workable approach requires experimentation.

The weighted band is one result of that experimentation. It gives one hand enough leverage to support each leg while the other hand guides the shoe into place. Although it assists with lifting, it cannot provide the ankle movement needed to complete the task.

This experience raises a broader question about footwear design. Most shoes require the wearer to lift the foot, point the toes, and slide the foot through the opening. If someone cannot complete that sequence, the shoe could provide another way for the foot to enter.

Independence depends on having meaningful choices, effective tools, and products that accommodate different ways of moving. Adaptive design recognizes that an ordinary task does not have to be completed in only one way. What other needs might become visible if adaptation were treated not as a special feature, but as part of how everyday products are designed?

References

Product Disclaimer

The products and companies listed below are included solely as examples of adaptive design features that may make dressing easier. Their inclusion does not constitute an endorsement, recommendation, sponsorship, or paid promotion. No manufacturer or retailer has sponsored this content.

Product features, availability, and suitability may change. A product that works well for one person may be ineffective, uncomfortable, or unsafe for another. Individual needs may vary based on movement, strength, balance, dexterity, sensation, swelling, muscle tone, orthotics, and other factors. Readers should evaluate products carefully and, when appropriate, consult an occupational therapist, orthotist, rehabilitation specialist, assistive technology professional, or other qualified provider before selecting adaptive footwear or clothing.

Examples of Adaptive Footwear and Clothing

These products illustrate different ways design can make dressing easier. They are examples, not recommendations. A feature that removes one barrier may not address another, and its usefulness depends on the person’s movement, strength, balance, dexterity, sensation, swelling, and muscle tone.

Skechers Hands Free Slip-ins

Skechers Hands Free Slip-ins use a structured heel and heel pillow to hold the shoe open as the foot enters. This can reduce bending, pulling, tying, and the need to use both hands.

The wearer must still lift and position the foot, clear the opening, and apply enough pressure to enter the shoe. A structured heel may hold its shape, but it can also create another edge for stiff or extended toes to clear.

Full link: https://www.skechers.com/technologies/comfort-technologies/slip-ins/

Nike Go FlyEase

Nike Go FlyEase uses a hinged sole that remains open for entry and closes when the wearer steps down. The shoe can be reopened by pressing on the heel with the other foot.

Because the shoe changes shape, the foot does not have to pass through a fixed opening. This may reduce bending, pulling, and tying, although the wearer must still position the foot and operate the mechanism.

Full link: https://www.nike.com/flyease/go-flyease

Other Adaptive Footwear

Zappos Adaptive offers footwear with features such as wide openings, adjustable straps, zippers, removable insoles, additional depth, stretchable uppers, and backs that open.

The value is in the range of choices. Someone may need room for swelling, space for an orthotic, a one-handed closure, or an opening that does not require the ankle and toes to move through a narrow space. No single design can meet every need.

Full link: https://www.zappos.com/c/adaptive

Adaptive Clothing

Tommy Adaptive includes clothing with alternative closures, adjustable openings, pull-up loops, brace-friendly designs, sensory-conscious construction, and garments shaped for seated wear.

These features change how clothing opens, fastens, and fits. They may reduce the fine-motor control required by buttons, provide room for stiff joints or orthotics, and limit bunching or pressure while sitting.

Full link: https://usa.tommy.com/en/tommy-adaptive

The Distance to the Door

Temperatures have pushed past 100 degrees this summer. For anyone who already hates the heat, even going out for lunch can feel like a questionable idea.

A restaurant may be only a few miles away, but getting there is only one part of the outing. The distance from the accessible parking space to the entrance also matters, as do the availability of curb cuts and shade. Even waiting outside can present challenges for someone using walking poles.

On a cooler day, these details may not matter as much. When the temperature rises above 90 degrees, even a short distance can take more energy to cover. The route is the same, but the heat makes it harder to navigate.

Summer brings outdoor meals, festivals, concerts, and long evenings. These experiences can be enjoyable, but accepting an invitation may also mean considering how much energy the outing will require.

The Plan Behind the Plan

A simple invitation can raise several questions. How close is the parking to the entrance? Does the route cross grass or gravel? Will there be a line outside? Are chairs available, and are any of them in the shade? If the heat becomes uncomfortable, is there somewhere indoors to cool off?

Answering these questions helps define what the outing will involve. Information about the distance, terrain, seating, and shade can help someone who uses walking poles, a wheelchair, or another mobility device plan ahead.

Consider an outdoor festival described as accessible. The entrance has a smooth curb cut, and accessible parking is available. Once inside, however, the food stands are across a grassy field. The performance area is several hundred feet from the nearest shaded table, while the accessible restroom is near another entrance.

Each feature may be accessible on its own, but moving between them in intense heat may take more effort. The festival may still be worth attending. However, the word “accessible” does not always convey the distances involved, the types of surfaces along the route, or whether seating and shade are available.

The same questions can surface in smaller settings. A restaurant may have a step-free entrance but offer summer seating only on a crowded patio. A family gathering may have plenty of chairs, but all of them are in direct sunlight. A boardwalk may be smooth and level, yet offer few places to sit or escape the sun. Any one of these details may seem minor. Over the course of an afternoon, they begin to add up.

Someone may arrive late or leave early. They may request an indoor table or decide not to attend. The reasons for these choices may not be apparent to others. An air-conditioned room may be more comfortable than a patio, especially on a hot day. Leaving early may mean that the heat has become uncomfortable or that fatigue is setting in. Adjusting plans can help someone enjoy an experience without overextending themselves.

Weather often changes plans. A rainy-day picnic may move indoors, while a drop in temperature may call for a coat. Heat can also affect what feels manageable, though the adjustments needed vary from person to person.

Many factors shape how the body responds to high temperatures. These include age, chronic health conditions, medications, physical activity, humidity, and access to air conditioning or shade. Some health conditions and prescription medications can affect the body’s ability to regulate temperature or produce sweat (Centers for Disease Control and Prevention [CDC], 2024).

Extreme heat can present additional concerns for people with disabilities or mobility limitations, particularly when shade, air conditioning, or other cooler locations are difficult to reach (U.S. Environmental Protection Agency [EPA], 2025).

There is no single experience of disability in summer. Two people with the same diagnosis can experience fatigue, pain, mobility, and heat differently. The same person might feel comfortable in the morning and need to change plans by midafternoon.

Flexibility can make an outing easier to manage. Someone might skip one activity to save energy for another, leave early to make the rest of the evening easier, or choose an indoor table so the gathering can continue. Participation may look different from one day to the next. It can mean staying for part of an event, changing the plan, or taking part in a different way.

What Makes Access Usable

Ramps, curb cuts, wide doorways, accessible parking spaces, and restrooms provide an essential foundation. Federal accessibility standards generally require at least one accessible route connecting accessible buildings, spaces, and features on the same site (U.S. Access Board, n.d.).

Access, however, involves more than reaching the entrance. A ramp in full sun can take more energy to navigate during the hottest part of the day. Accessible seating may be some distance from shade or restrooms, while accessible parking may still involve a longer route to the appropriate entrance than a visitor expects. A route can meet accessibility standards without conveying the distance or effort involved.

Weather adds another consideration. The same paved path may require less effort at 9:00 a.m. than at 2:00 p.m. Its length and surface have not changed, but the temperature has.

Clear information can help someone plan before arriving, and an event page is a good place to provide it. The page does not need to promise that the location will work for every visitor. Instead, it can describe the setting: the main route is paved, the parking area is a quarter mile from the entrance, several exhibits are on grass, and shaded seating is available near the main building.

These details give people a chance to decide what works for them. A quarter-mile route may work for one visitor but require more energy from another. Compacted gravel may be suitable for one mobility device and difficult to cross with another. Shade may offer enough relief for some people, while others may need an air-conditioned space.

Providing this information also reflects several principles of Universal Design. Equitable use means making useful details available to everyone rather than requiring a visitor to ask for them. Flexibility in use can include offering more than one route or a choice between indoor and outdoor seating. Perceptible information means describing distances, surfaces, slopes, shade, and seating clearly.

The principle of low physical effort can be applied by placing seating along longer routes and keeping key parts of an event closer together. Universal Design supports environments that people with a range of needs can enter, navigate, and use (Centre for Excellence in Universal Design, n.d.).

Clear descriptions also reduce the need for personal explanations. Asking how far an accessible parking space is from the entrance should not require a conversation about diagnosis, pain, or fatigue. The distance is useful regardless of the reason for asking.

A few adjustments can help after people arrive. Organizers might place chairs in the shade, provide places to rest along longer routes, or offer indoor seating. These features support people with disabilities and may also help anyone affected by the heat.

Outdoor events will always have limits. Grass may be uneven, some routes may be long, and summer temperatures may make those conditions more difficult to navigate. Clear descriptions cannot remove those conditions, but they can help visitors account for them when making plans.

A summer outing may still require checking the forecast, locating the nearest indoor space, and deciding in advance how long to stay. That preparation does not diminish the experience. It protects the time and energy needed to enjoy it.

Access is often measured by whether someone can get there. A better measure is whether they arrive with enough energy, comfort, and time to enjoy the reason they came. How might access look different if participation, rather than arrival, were the measure?

References

“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.