Personal Testimony
Carl Hoffmann (he has asked me to change his name and the details of his life and history should I write about him, and I have) is a 72-year-old Marine veteran from Syracuse who served in Vietnam. In his later years, he developed multiple sclerosis and required the aid of an electric wheelchair for mobility. While his condition has largely deteriorated his ability to perform certain physical tasks, his electric wheelchair allows him to retain a sense of independence and dignity.
“You see,” he says, “I never liked the phrases, ‘wheelchair-bound’ or ‘confined to a wheelchair’. My wheelchair doesn’t make me feel confined. It allows me to navigate the world in ways I otherwise couldn’t.” Unfortunately, in early June of 2024, things would turn sour for Mr. Hoffmann, as his electric wheelchair was damaged by luggage carriers at the airport while returning from a flight to California. Hoffmann recalls, “Imagine coming back from a trip and realizing someone broke your legs. That’s what it feels like. My wheelchair was my legs.” According to the Hoffmann family, wheelchair repairs were not covered by his insurance. When they called the manufacturing company to schedule a repair, Carl was put on a waiting list for an indefinite period of time. As of October 2024, he is still on the waiting list.
My Perspective
From my perspective, there is little awareness about this issue, perhaps due to the societal stigma around disability, internalized ableism, or some sort of collective fear around discussing issues relevant to the disabled. Whatever the reasons may be, the unfortunate reality is that most people, including many of those within the disabled community, are oblivious to the fact that the wheelchair industry is highly bureaucratized and largely controlled by only two private equity firms. Much like cellphone and appliance companies, these firms prioritize replacements over repairs, as it is more profitable. And patients are paying the price. According to the Connecticut Wheelchair Reform Coalition, these two firms, Numotion and National Seating & Mobility, consistently claim to be understaffed, lacking the money and resources to hire more people to expedite repairs, despite raking in millions of dollars in annual profits for several consecutive years.
Currently, in the US, there are over 5 million people who require the aid of a wheelchair for mobility. A study by the University of Pittsburgh revealed that more than half of all their wheelchairs will need to be repaired on a regular basis — roughly every six months. But as we’ve seen in the case of Mr. Hoffmann, these repairs can take months, or even years, to be completed. Imagine being put on a waiting list to use your legs again. This is the dehumanizing nature of medical bureaucracy; the likening of necessary, life-changing medical equipment to mere household appliances, like a broken refrigerator or AC unit.
organized advocacy efforts
To adopt an optimistic stance, there exist several disability advocacy groups that are dedicated to changing the whole process of obtaining wheelchair repairs. These groups, such as the aforementioned Connecticut Wheelchair Reform Coalition, Colorado Cross-Disability Coalition, MassHealth, and More Than Walking, are collecting stories from individuals whose wheelchairs have been damaged and the lengths they have had to go in order to see them fixed. These stories are being collected in hopes that they will put pressure on lawmakers to enact legislative change. For instance, their newest proposed bill, titled “Right to repair”, is the nation’s first repair law to focus specifically on wheelchair users. This law would guarantee access to parts, tools, quick repairs, and even software from wheelchair manufacturers.
Why this matters
“But I’m not disabled. Why does this matter to me?” This underlying societal mentality, whether conceived consciously or not, has plagued the movement for decades, forcing many within the disabled community to become self-advocates. In fact, this mentality appears to lurk behind every social and political movement in history. “I’m not black. Why should racism matter to me?” “I’m not female. Why should feminism matter to me?” “I’m not gay. Why should marriage equality matter to me?”. Dissimilar to these mentioned statuses, disability is an exceptional case.
Recalling a statement by writer and intellectual, Susan Sontag, in her 1978 prose ‘Illness as Metaphor’, says, “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick”. Disability is a fluid aspect of the human identity. Anyone can enter the ‘kingdom of the ill’ at any point in their lives, through natural causes or by some sort of tragic accident. The human body is disconcertingly fragile.
The life expectancy of the average US citizen sits at approximately 76 years old. Among individuals who manage to make it to this point, 70% of these adults will become disabled to some extent. And this is what’s puzzling about the discourse surrounding disability — if most adults who live to be older than 76 years of age will become disabled to some extent, why are we still holding onto our collective, antiquated notions of “politeness” and socially acceptable language? Why is it considered socially unacceptable (or taboo) to discuss disability in a public setting?
Disability on a societal level
Consider the equivalence to various other forms of “taboo” or “impoliteness” that permeate social discourse. Among industry workers, it has historically been considered ‘impolite’ to discuss one’s salary among their coworkers. American cultural norms have instilled the idea that discussing finances is a private, personal matter. Money is an uncomfortable topic and salary differences are known to sow jealousy and resentment in the workforce, so it’s better to just leave it out of the conversation entirely. Conveniently, the absence of discussions around wages also disguises potential wage theft, salary inequality, discrimination, and power dynamics between employers and the employed.
So how does this observation relate to the topic of disability? Certainly, there are many fundamental differences between the discussion of class and disability, but these two topics overlap in many areas, such as 1) disability, much like salary inequality, carries an air of stigma and discomfort about it — most individuals would much rather prefer to avoid the topic entirely, facilitating ignorance and misinformation surrounding the inequity experienced by low-income and/or disabled individuals — and 2) as previously mentioned, there exists much overlap between the experiences of the disabled and the poor, with many individuals holding membership in both communities.
Disability exacerbates the effects of poverty to an alarming degree. As reported by the U.S Census Bureau, people with disabilities are severely overrepresented in poverty statistics, with a shocking 26% of those with a disabling condition living below the poverty line. In an economy that already struggles to provide many of its able-bodied citizens with the means to afford basic necessities like groceries, rent, gas, bills, utilities, education, and internet, disabled people experience the ‘privilege’ of not only having to provide for the means to afford these necessities, but also for any sort of prescription drugs and special-grade medical equipment, much of which, as previously mentioned, is not covered by insurance or state bureaucracies. This leaves underprivileged disabled people with difficult decisions to make: to prioritize groceries this week or pain medicine, to save up for monthly rent or wheelchair repairs, to choose between heading to work today to afford these things or attending a necessary medical consultation?
Personal inspiration
Recalling the namesake of this article, a wheelchair user from Pensacola who goes by the name “JG” describes their routine in an online interview as a T9 paraplegic:
“I can do most things by myself. I live with my partner of 4 years who is supportive of my disability and is willing to help out when he can. We have discussed marriage plans, but ultimately decided to hold off, as it would jeopardize my eligibility for disability benefits.
I can dress myself, take showers in my adaptive bathroom, cook my own meals, drive, and run errands in town. I also work from home as an online tutor in accounting through Pensacola State College and I hold a part-time position as a cashier at a local shop. Prior to these jobs, I worked for an insurance company as an agent, but I had to quit after the accident to focus on surgeries and recovery. As of now, I am saving up money from my two jobs to be able to afford further adaptive modifications to my home: a wheelchair ramp to my front door, an accessible van with wide-doors, perhaps a service dog. Of course, none of these modifications are covered by my insurance or healthcare plan. It will have to come out of pocket completely.
If I had to select the hardest part of existing as disabled in an ‘abled’ society, it would have to be the price gouging of necessary medical equipment, the way in which the public makes assumptions about me and my capabilities as a paraplegic…and sidewalk cracks.”
Understanding disability
I would like to take a moment to reflect upon these testaments. Imagine a world where JG was not faced with an ultimatum to choose between sacrificing their plans for marriage or their ability to qualify for disability benefits. Imagine a world where every disabled citizen in America has the comfort of not having to worry whether their employer or insurance company prioritizes the quality of life of disabled members of society. Imagine a world where disabled people could not only survive, but live and thrive. And lastly, imagine believing these goals are out of reach.
It can be perplexing to imagine a world where these societal ailments did not exist, even more so to imagine that they ever existed in the first place. It seems as though our broader societal tendency to place intrinsic value on certain qualities, such as efficiency, proactivity, and intellect, over others has been ingrained in the fabric of our culture for as far back as anyone can remember. For certain, a grand portion of the most recent adult generation, Gen-Z, can recall the headache of being lectured by a grandparent on the supposed “laziness” or “incompetency” of the current generation; “Nobody wants to work anymore”, “This generation expects everything to be handed to them”, “Kids these days don’t know what it means to pull oneself up by the bootstraps”.
Consider the lowest common denominator between these commonly recited phrases. In their essence, they all appear to criticize one’s lack of society’s most valuable characteristics: efficiency, proactivity, and intellect. These are the qualities most advantageous for labor production and innovation. Those whose distinct physical or mental faculties prevent them from meeting these standards of intellect, proactivity, or efficacy are effectively considered “disabled” to varying degrees. Your value as a member of society is intrinsically linked to your ability to produce, produce, produce.
Ability + Barrier = Disability
I’d like to give some considerable attention to the phrase “varying degrees”, and the specific implications behind this meticulously selected terminology. Would it be fair to assert that disability, as an essential part of the natural human variation, exists along a continuous spectrum rather than within a binary system? Should we consider the possibility of likening disability to other fluid, pluralistic identities such as gender or racial identity? Most experts agree. Citing The Disability Spectrum and Why it Matters, a piece published by the Rare Advocacy Movement, a community-based advocacy network of individuals living with rare or uncommon diseases, “[Disability] is often seen as a binary ‘check yes or no’ matter. Either you’re disabled or you’re not. This simply isn’t the case.” Recognizing that there are so many different variations of disabilities — even for one individual from day to day — is an important step towards cultivating a world that adopts standards of true inclusivity, equity, and accessibility. In the same sense that award-winning Canadian-American philosopher Quill Kukla proposes adopting a pragmatic, pluralistic approach to defining the concept of “disease”, specialists and disability advocates alike encourage the re-defining a “disabling condition” in simplest terms as: Ability + Barrier = Disability.
The most common barriers include the following:
- Attitudinal refers to how the views of others impact the disabled person. This includes stereotyping, stigma, prejudices, biases, and discrimination, all of which contribute to a lack of accessible services and support.
- Communication barriers are most commonly experienced by those with visual, auditory, cognitive, or language-processing-based disabilities. These barriers may manifest themselves as heightened difficulty with reading written documents, deciphering types or auditory messages, or comprehending images.
- Physical barriers are the bane of those living with conditions that reduce mobility. Physical barriers involve aspects of the environment that hinder one’s access to buildings, activities, or services (Recall the interview with JG in the previous section). This can include stairs, sidewalk cracks, and the absence of hand-railings.
- Policy Barriers arise from laws and regulations that affect individuals with disabilities. For instance, a qualifying person with disabilities would face a barrier if they were denied access to essential federally funded support programs.
- Pragmatic Barriers entail any sort of obstacle between a disabled individual and their ability to access healthcare services or rudimentary exams. This can include any sort of examination or treatment that requires the patient to exert themselves beyond their physical or mental means (e.g. requiring a wheelchair user to stand for long periods of time during an examination).
- Social Barriers occur when an aspect of the conditions which we learn, grow, live, and work within contribute to decreased function or happiness. This is especially true for neurodivergent individuals. As mentioned previously, those with disabilities are statistically more likely to live below the poverty line and earn less money on average than able-bodied persons.
- Transportation Barriers arise when there are insufficient transportation options, hindering a person’s ability to function independently. This is especially detrimental for disabled individuals who reside in an area without accessible public transportation or are unable to afford a wheelchair-friendly vehicle.
Let’s Talk Solutions
Upon covering seven barriers faced by disabled people (there may be more, and these categories have their own subcategories, but for all intents and purposes of this analysis, we will be focusing on seven for now), we gain a better understanding of the frustrations expressed by people like Carl Hoffmann and JG. Disabled people make up the largest minority in the United States (roughly 26% of the population), but are often the most overlooked by media and social activists. Nevertheless, simply pointing out an issue without offering solutions is inadequate at best, and performative at worst. Let’s take a look at some potential solutions to some pressing issues commonly faced by people with disabilities. In this section, I have decided to give especially close attention to issues pertaining to wheelchair users, as per the title, and other disabilities that impact mobility, although there may be considerable overlap between these solutions and other disabling conditions.
What exactly are some of the most pressing barriers facing the disabled community?
This comprehensive list will be ordered in accordance with versatility and broadest reach:
- Marriage rights: By the year 2024, it would seem plausible to assume that every US citizen has the right to marriage without discrimination. This makes sense, right? In actuality, the answer is a bit more complicated than that. In 2015, a landmark Supreme Court ruling in Obergefell v. Hodges granted the fundamental right of marriage to same-sex couples under the Due Process and Equal Protection clauses. While this ruling technically grants the right of marriage to all US adults, regardless of protected status, it does not grant the right of marriage without an ultimatum. This especially pertains to disabled people, as reflected by JG under the ‘Reflections and Testaments’ section. Currently, in order for a disabled adult to marry in the US, they must be willing to sacrifice their eligibility to receive certain public benefits. This can include access to Supplemental Security Income (SSI), Adults with Disabled Children (DAC Benefits), and Medicaid or other state benefits. These legislative rulings are currently being challenged by lobbyists for the Disability Rights Education and Defense Fund (DREDF). A bill introduced in December 2023 aims to remove the federal rule that ties a disabled person’s marital status to their eligibility for Social Security benefits. This bill is continuously pushed forward by heightened awareness and activism efforts of the disabled community and allies.
- Right to Repair: This proposed solution to systemic wheelchair repair delays by private equity firms was mentioned previously, but will be elaborated further upon in this section as a viable solution. In 2023, the Colorado Cross-Disability Coalition proposed a revolutionary new bill to Congress that would change the way the wheelchair industry processes repair requests and access to vital information on wheelchair maintenance. The bill would require that manufacturing firms provide necessary information like repair manuals, software updates, and technical specifications to repair shops and wheelchair owners, ensure availability of replacement parts directly from the manufacturer or authorized vendors, allow wheelchair users a choice between accessing repairs through authorized manufacturers or independent repair shops, and place limits on the allowed duration of time between repair requests and responses from manufacturers. This new law is extremely important, as it would reduce repair times for wheelchair users, save costs by allowing more repair options, and allow people with mobility limitations to regain their sense of independence, drastically increasing the quality of life of those living with mobility-limiting conditions. Although this bill has already been successfully passed in Colorado, with similar bills reaching the congressional floor in Connecticut, Minnesota, and Pennsylvania, there is still much work to be done. The end goal of this proposed bill, as stated by the Colorado Cross-Disability Coalition themselves, is to see this bill passed in all 50 states.
- Grandfather Clause: The ADA (Americans with Disabilities Act) was signed into law on July 26th, 1990. Essentially, this landmark piece of legislation was passed to ensure ‘equal rights and opportunities for individuals with disabilities’, covering areas such as employment, public accommodations, transportation, and telecommunications. A core aspect of this legislation is the way it regulates the construction of any new public buildings to ensure accessibility for people with limited mobility. This covers wheelchair ramps, hand-railings, elevators, accessible restrooms and drinking fountains, and handicapped parking spaces. While this law mandates the regulation of new building constructions, it does not require antiquated buildings to be updated to reflect modern standards of accessibility. For example, if standards of accessibility were updated in 2010, a structure built in 1990 would not be required to alter its existing infrastructure. This is known as the “Safe Harbor Provision”. How might a wheelchair user access a restaurant with stairs constructed before 1990? How might an elderly person or mobility-limited student navigate a museum, library, or other educational facility that has been “grandfathered in”? With these considerations in mind, many disability advocates argue that the ADA is overdue for an update, and that the Safe Harbor Provision is not doing enough to ensure accessibility. Many mobility-limited individuals are pushing for stricter regulations and more comprehensive updates to older buildings.
-Hubert Humphrey
This specific quote can be attributed to Democratic Senate Majority leader of the Lyndon B. Johnson administration, Hubert Humphrey, in 1965, although a similar sentiment has been expressed many times throughout history by various figures including Jesus Christ, Mahatma Gandhi, Nelson Mandela, Thomas Jefferson, Eleanor Roosevelt, and Pope John Paul II. Creating an accessible society is the greatest hallmark of a healthy, compassionate culture. When our communities prioritize the needs of those with physical or mental limitations, every aspect of daily life for everyone, even those who are able-bodied, becomes easier and more convenient and usable. This is known as the “Universal Design Theory”, and it has proven itself true for generations.
Here’s an example: In the mid-1940s, local governments around the US began implementing curb cuts on sidewalks to aid the mobility of wounded WWII veterans who utilized wheelchairs. As this effort improved societal convenience for the disabled, it also consequentially enhanced sidewalk usability for parents with strollers, travelers with heavy luggage, delivery personnel pushing carts, bicyclists, skateboarders, and elderly people. A more modern example of this principle in action is text-to-speech software on iPhones. Initially intended to aid deaf individuals with hearing-based tasks such as phone calls, this feature also enables users without any sort of hearing impairment to listen to content in a noisy environment or stream while performing other tasks.
In its entirety, accessible models of communication, transportation, healthcare, legislation, and infrastructure ensure comfort and convenience for everyone. Disabled people are a vital part of society and are here to stay. Let’s work together to cultivate an inclusive environment for people of all backgrounds and abilities.
Every human, regardless of disability status, deserves to not only survive but thrive.
Sources:
Craven, J. (2024, June 19). ‘Incredibly frustrating.’ New law will dramatically speed up wheelchair repairs. News 12 New York. Retrieved April 14, 2025, from https://connecticut.news12.com/incredibly-frustrating-new-law-will-dramatically-speed-up-wheelchair-repairs
Boninger, M., McClure, L., Cooper, R., Oyster, M., Lieberman, J., Williams, S., & Houlihan, B. (2009, December 16). Pitt study shows wheelchair breakdowns common and cause problems for spinal-cord injured users. Spinal Cord Injury Zone. Retrieved April 14, 2025, from https://spinalcordinjuryzone.com/news/9769/pitt-study-shows-wheelchair-breakdowns-common-and-cause-problems-for-spinal-cord-injured-users
Numotion. (2025). Customer stories & mobility journeys. Retrieved April 14, 2025, from https://www.numotion.com/customer-center/customer-stories
Sontag, Susan. Illness as Metaphor. Farrar, Straus and Giroux, 1978.
Houtenville, A., & Bach, S. (2024). Annual Report on People with Disabilities in America: 2024. Durham, NH: University of New Hampshire, Institute on Disability. Retrieved April 14, 2025
Centers for Disease Control and Prevention. (2025, April 3). Disability barriers to inclusion. Retrieved April 14, 2025, from https://www.cdc.gov/disability-inclusion/barriers/index.html