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What took so long for the ADA to be passed? And we still do not have it right.


The Americans with Disabilities Act (ADA) was passed into law in 1990 after many years of work by many people (Heumann, 2020). This can be thought of as remarkable to have taken so long, considering the fact that one of the most influential Presidents of the United States was himself a person with a disability. Franklin D. Roosevelt was a person who required the use of a wheelchair starting in the early 1920s (Kaschack & Bauman, 2020). The physical environments at that time were not conducive for people using wheelchairs or any major mobility limitations. People who were not able to walk without assistance or those who required wheeled mobility could not be successful with steps, hills, or physical obstacles such as heavy doors that were ever-present in the world. Of course, some of these variables were not those that could be controlled for, but over time the development of buildings and facilities changed the landscape, literally. Where there were hills, level floors were built. Where there were steps, ramps, escalators, and elevators were integrated. Where there were heavy doors, electric doors controlled by a button would allow people to move through entrances and egresses without requiring the same level of physical effort. Beneficiaries go beyond those people who are classified as “disabled’. For example, parents with children and strollers, people carrying items in both hands, and those with temporary impairments all benefit from these environmental modifications.

For President Roosevelt, this was done for his benefit but hidden from the public’s eyes when possible since these accommodations did not represent freedom or equality. Instead, they represented a perceived weakness and shame, which Gilbert (1988) suggests was something many feared would hinder Roosevelt’s political career. We can only imagine the layout of our world if all the buildings that President Roosevelt entered were modified to permit maximal accessibility. Instead, we learn about the hidden tunnels, entrances, and paths that were created quietly to permit the President to lead the US during tumultuous times. Of course, American society did not want to see a weak president, but he was anything but weak. He led the country through poor economic phases and through a world war. He did this while being someone who was mobility-limited and needed environmental accommodations.

Fast forward over 40 years, and we have the ADA. People in the same situation as President Roosevelt can now access the world without needing to go underground or through other concealed entrances and egresses. But is that what the ADA allowed for? As the greater than 3,000,000 people who use wheelchairs or other wheeled mobility in the United States, the answer may very well be: “Not necessarily.” Meyers and his colleagues published a study in 2002 to look deeper into the obstacles that limit peoples’ abilities to reach desired destinations beyond the simple and, as the authors state, “arbitrary” standard that the ADA often represents. The ADA was foundational, not terminal. Advancements in equipment, changes in architectural design and social desires, population growth, and improvements in medical care and rehabilitation outcomes were not fully considered in this law. So why is this law still the standard? Why has it not resulted in a more accessible world, particularly where the number of people with mobility limitations is substantial?

In New York City, one out of 15 New Yorkers has an “ambulatory disability,” but only 27% of the stations are accessible (Elkeurti & Ley, 2023). Whether it is the much lower than 100% accessibility within transit systems in major US cities over 25 years after the ADA was passed or the loopholes that allow buildings to remain inaccessible, there is no question about this so-called standard being inadequate for people with mobility limitations. How long will it take for the most basic of accessibility elements, such as grab bars, to be consistently installed to promote increased safety and function for people who need them as compared to being an item line check-off for an inspector?

Now, I am not so cynical as to not believe that improvements will not be made. Historically, there have been revisions to the ADA related to accessibility in 2004 and 2010. The 2004 revision included updating requirements to the Americans with Disability Act Accessibility Guidelines (ADAAG) as well as the pre-ADA statute called the Architectural Barriers Act (ABA) of 1968. The revised regulation in 2010 is the ADA Standard for Accessible Design, which addresses some of the loopholes in the previous laws with an increased consideration for pathways of travel. Although not necessarily excluded from previous versions of the law, clarifying requirements about how people can access primary (large) common spaces was included. For example, previous laws that included guidelines for a bathroom to be accessible may not have had specific guidelines about available pathways to that bathroom. Sometimes, the guidelines in the statute are not enough, and stakeholders need to consider the intent of the ADA and related regulations. In addition, there needs to be a consideration of unconscious discriminatory actions (or inaction) that go beyond simply the environmental barriers that cause obstacles for people with mobility limitations.

The stakeholders that I am referring to include the primary stakeholders: the person with the mobility limitation their family/caregivers. Additionally, aside from the legislators who developed, passed, and updated the ADA, people with a specific duty (legally and/or ethically) are healthcare professionals and entities that provide service to the primary stakeholder(s). Tangentially, we must consider the architects, designers, builders, and inspectors who create, develop, and certify the environment for the stakeholders to move and participate in society.

The person with the mobility limitation has a right to access public areas and social spaces, but there is a responsibility on their part to confirm that the spaces are specifically accessible to them. For instance, a person who uses a manual wheelchair may not require the same accessible space as someone using a power wheelchair or a motorized scooter. For people who can ambulate with a device, such as a walker, there is a need for them to communicate with entities such as hotels, restaurants, reception halls, or stadiums to find out ways to minimize or eliminate their barriers.

As a result, I have listened to many of my patients’ stories about hotel rooms not being fully accessible. The bathroom door is wide, and there is a barrier-free entrance to the shower with a wall-mounted bench, but they cannot get on or off the bed. The reasons have included bed height, access to the side of the bed they need to use, or immovable furniture in proximity to the bed. President Roosevelt would not have had any of these issues. This is not a new problem. The difference here is that the business entity providing the service has not considered all reasonable accommodations. Instead, they provided what they believed the law required of them. Unfortunately, in this case, the person who is asked to listen and respond to the disgruntled people who expected an accessible hotel room is a front desk staff member. Of course, a manager may be available to assist, but it is likely there was little training related to disability etiquette or accessibility needs service recovery.

The responsibility of healthcare providers is possibly the most confusing. Physicians and nursing staff will work to process the needed paperwork for people with mobility limitations to get the equipment and accommodations they need but may not refer their patient to an occupational therapist (OT), physical therapist (PT) or social worker (SW) who can provide more specific services to this patient and their caregivers. If the referral is provided, there is always a question about whether the OT or PT will go beyond a standard treatment protocol to prepare their patients to succeed in participating in social activities where environmental barriers may exist. The PT, OT, and SW would meet their duty of care by providing education about how to navigate certain environments and/or communicating their needs to succeed in their desired social activities. As a physical therapist myself, I embraced the responsibility to provide more than stretching and strengthening exercises.

I have provided consultations to reception halls where fundraising events were taking place when it was known that there would be a high percentage of people in wheelchairs. For these events, I needed to continually track the table and chair set up to ensure guest access from their table to the bathroom. On one occasion, a very unfortunate situation resulted that forced an event guest to need to be pushed in her wheelchair through the catering kitchen and server preparation areas to get to and from the bathroom and her seat at the front table of the event floor. There were many elements that led to that situation. All of which could have been avoided. The ADA was not developed for individual circumstances and has not yet been expanded enough to include detailed training for service to people with mobility limitations. The 2010 ADA revisions were not useful in this case, but future revisions can be.


References:

Elkeurti A., & Ley, A. (2023). Elevators at most subway stations? ‘I’ll believe it when I see it.”, New York Times. August 31, 2023.

Gilbert, R. E. (1988). Disability, illness, and the presidency: The case of Franklin D. Roosevelt. Politics and the Life Sciences, 7(1), 33-49.

Heumann, J. (2020). Being Heumann: An unrepentant memoir of a disability rights activist. Beacon Press.

Kaschak, J. C., & Bauman, D. (2020). Teaching Disability History: The Case of Franklin Delano Roosevelt. The Social Studies, 111(5), 262-273.




Attribution: National Park Service




Attribution: Margaret Suckley, Public domain, via Wikimedia Commons



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