Pandemic “Disability Cons”

Abstract

Disability rights law has made issues of access and accommodations much more visible in American life. Yet a byproduct of the increased awareness of disability rights has been “fear of the disability con,” that is, the common apprehension that people are abusing the law to gain an unfair advantage. Many times, this moral panic creates an invisible, oft-overlooked barrier for people with disabilities who desire to utilize their rights. They either are refused the right altogether or give up asking for it in the first place because they are afraid of being accused of being fakers. This Article shows how fear of the disability con surfaced along the progression of the COVID-19 pandemic. It describes the schism between the ways in which people with disabilities generally fared under the pandemic and some popular perceptions regarding the “privileges” they allegedly received because of their protected legal status. Those so-called privileges include mask exemptions, vaccination priority, and permission to continue remote work. The Article concludes with lessons the COVID-19 pandemic experience can teach us about the nature and scope of the fear of the disability con.

Introduction

In her 1984 book The Disabled State, published before disability was formally recognized as a civil rights matter through the Americans with Disabilities Act (ADA), Deborah Stone acknowledged disability to be a “special administrative category” that gives disabled people some “privileges.” She wrote: “[] a social observer cannot fail to notice that disability entails (or may entail) at least as much political privilege as it does social stigma. It is a political privilege because, as an administrative category, it carries with it permission to enter the need-based system and to be exempted from the work-based system. It can also provide exemption from other things people normally consider worth avoiding: military service, debt, and criminal liability.” ¹

As I have written elsewhere, ² after the “disability rights revolution,” ³ the so-called privileges given to individuals with disabilities became no longer limited to receiving public benefits and being exempt from working, as Stone suggested originally. Nowadays, the status of disability awards privileges that are omnipresent in everyday lives. ⁴ Designated disabled parking, ⁵ exemptions from standing in queues, ⁶ getting extra time on exams, and being able to take a service dog into public places that don’t allow pets ⁷ are just a few examples. While those types of privileges are in fact accommodations and modifications put in place to help disabled persons navigate a world not designed with them in mind, ⁸ for the layperson those are often perceived as “special rights” ⁹ that are prone to abuse by those who fake disabilities. ¹⁰

Those perceptions about abuse of disability rights by “fakers,” which I called Fear of the Disability Con, are also fueled by the common misconception of disability as dichotomous and one-dimensional: one is either disabled or not. In reality, however, disability is a fluid state. ¹¹ It fluctuates, manifests itself in visible and invisible forms, and is formed through a complex interaction between the pathology and the social environment. ¹² The moral panic of disability con has consequences for people with disabilities who are trying to utilize the disability law and are often questioned and harassed. Rights claimants with disabilities also need to navigate defensive policies informed by the fear of the disability con. ¹³ Therefore the public suspicion of abuse and fakery serves as an oft-overlooked barrier to preventing the proper implementation of disability rights law and disabled people from fully taking part in society.

While the dust has not yet settled on the COVID-19 pandemic, it is clear that the pandemic has exacerbated or shed new light on myriad social and legal phenomena: from the politicization of public health measures to discussions of triage and the value of life. In this article, I show how the socio-legal phenomenon of the fear of the disability con has manifested itself in different ways through the progression of this global public health crisis.

While the dust has not yet settled on the COVID-19 pandemic, it is clear that the pandemic has exacerbated or shed new light on myriad social and legal phenomena: from the politicization of public health measures to discussions of triage and the value of life. In this article, I show how the socio-legal phenomenon of the fear of the disability con has manifested itself in different ways through the progression of this global public health crisis.

A schism exists between the ways in which people with disabilities generally fared under the COVID-19 pandemic and some popular perceptions regarding the “benefits” they allegedly received because of their protected legal status.

An estimated 83% of people under the age of sixty-five who died from COVID-19 were people living with underlying medical conditions that meet the legal definition of disability, including heart disease, cancer, kidney disease, diabetes, and lung disease. ¹⁴ This is because some disabled people are at an increased risk of infection or severe illness because of underlying medical conditions. ¹⁵ The rationing of medical care and resources on the basis of disability in state Crisis Standards of Care plans also threatened the lives of patients with disabilities and served as a reminder of the societal devaluation of disabled lives. ¹⁶ Disabled workers were also laid off at higher rates compared with their nondisabled peers during the pandemic. ¹⁷

On the other hand, people with certain disabilities were exempted from wearing masks, were given priority in the queue to get vaccinated, and were also allowed to continue to work remotely when others were called back to the workplace in person. Those “privileges” were the source for a moral panic around pandemic disability cons, which added strain on people with disabilities who wanted to use these accommodations but were thought to be fakers and malingerers.

In the rest of the article I will describe this new manifestation of the fear of the disability con in chronological order that fits with the progression of the pandemic and will demonstrate the effects it had on disabled individuals during that time. I will conclude with some suggestions regarding what the pandemic experience can teach us about the nature and scope of this socio-legal phenomenon.

I. Pandemic “Disability Cons”

A. Mask Exemptions

Along with stay-at-home and social distancing orders, requirements to wear masks or face coverings were a significant public health measure aimed at stopping the spread of coronavirus issued by the Centers for Disease Control and Prevention (CDC). The original CDC recommendations, promulgated in April 2020, ¹⁸ advised that every person over the age of two should wear face coverings in public unless that person “has trouble breathing, or is unconscious, incapacitated, or otherwise unable to remove the cover without assistance.” ¹⁹ Similar to what happened with the definition of disability under the original 1990 ADA, ²⁰ this open-ended exemption category combined with the fluid nature of disability (which could take on an invisible form or a periodic nature), yielded suspicion of disability con alongside some instances of abuse.

Mask mandates quickly became (and continue to be) a highly contentious and polarizing matter, which crossed partisan divides. ²¹ Ideals of personal liberties and skepticism about the existence or severity of the pandemic generated resistance to mask wearing specifically among the Right. To avoid wearing face covering, “anti-maskers” — a small yet vocal group — evoked the exemptions they perceived as the “benefits” or “special rights” that follow the legal status of disability.

Misinformation regarding mask exemptions under the ADA and under the Health Insurance Portability and Accountability Act (HIPAA), which was falsely interpreted by anti-maskers to allow a person the right not to disclose their disability, started surfacing online. ²² As one anti-masker advised in a viral online video: “so you can say that you have a medical condition. And the medical condition might be that wearing a mask is strangling your sense of free speech …” ²³

Legally, however, the HIPAA privacy rule was designed to safeguard individually “identifiable health information,” only as it applies to covered entities (insurance companies, clearinghouses, and health-care providers with access to information) and their business associates. ²⁴ The rule regarding privacy of health information does not apply to vendors or business owners who may ask patrons to put on masks when entering the store.

The irony of the situation is clear: anti-maskers were coopting rules put in place to protect people with disabilities in a way that puts this vulnerable population at greater risk of contracting the virus.

As with other manifestations of disability con, the ones to bear the brunt of attempts (no matter how sporadic and uncommon) to abuse the law were disabled people themselves. Many people with genuine disabilities that prevent them from wearing face coverings, like those with sensory processing disorders, developmental disabilities, or facial deformities, ²⁵ were subjected to harassment and exclusion because of others thinking they are “faking it.” ²⁶ Disabled people not able to wear masks were turned away from stores and shouted at, and there were even reports of violent confrontations over this issue. ²⁷ Those threats and suspicion created a chilling effect on the possibility of those with genuine needs to ask for the exemption in the first place, thus making them even more isolated during the pandemic. ²⁸ In other words, it is this public suspicion that creates a barrier for disabled individuals to safely participate in society, even though black-letter policy (in the form of the CDC exemptions) was put in place to help them achieve that goal.

The fight against mask exemptions and fear of the disability con has also reached the courts. In May 2020, Kimberly Pletcher filed a disability discrimination complaint under Title III of the ADA in the United States District Court, Western District of Pennsylvania. Pletcher claimed that Giant Eagle, a grocery chain store in the Pittsburgh area, discriminated against her because she could not wear a mask due to her respiratory impairment. ²⁹ This is because the chain had a strict policy not allowing customers into the store without masks, without any exemptions, offering curbside services instead as a reasonable disability accommodation. ³⁰ In response, Giant Eagle states that it does not have enough information about Ms. Pletcher’s disability to be able to address it. ³¹ The complaint was then amended with additional plaintiffs joining the case.

On October 23, 2020, the court denied a motion for preliminary injunction to modify Giant Eagle’s policy and permit the plaintiffs to enter the store without masks as a reasonable accommodation. This motion was made by another plaintiff, Josiah Kostek, who claimed to have “mental health impairments” that prevent him from wearing masks due to severe anxiety and difficulty breathing. ³² In denying the motion, the court determined that Kostek did not prove his inability to wear a face covering using appropriate medical records, nor did he prove he could not comply with the secretary of the Pennsylvania Department of Health’s as well as the store’s policy allowing people to wear a full face shield in lieu of a cloth face covering. ³³ The court also concluded that Kostek’s claims of disability exemptions are undermined by numerous inconsistent statements he made in social media posts and on video where he says that he is in fact able to wear a mask “but merely believes he has a right to refuse to comply with mask policies.” ³⁴ As of June 2021, the case was continuing and seems especially contentious, with a special master being appointed to handle ongoing discovery disputes.

Mask exemption, the first arena of pandemic disability con, is illustrative of the phenomenon as a whole. Masks could be considered the most obvious, visible symbol representing the COVID-19 pandemic. Even though they were found to be efficient in halting the spread of coronavirus, and have become a part of people’s routine for almost two years now, masks are uncomfortable, cumbersome, and shown to create a barrier to mutual empathy, communication, and quality social engagement. ³⁵ To be exempt from masks is exactly the type of “privilege” attributed to disability that is prone to misunderstanding as to the real nature of the accommodation. The moral panic around those faking disabilities to get this “special right” is thus similar to the exemptions Deborah Stone pointed to decades ago.

B. Jumping the Vaccine Queue

Queues are a system of ordering in conditions of scarcity designed to enforce social order and increase efficiency. ³⁶ Although queuing is based on the premise of “first come, first served,” research has shown that laypersons perceive procedures that use a “weaker first” mechanism — one that promotes allocation based on need, status, or identity — as the fairest system. ³⁷

In previous work, I showed how people were willing to give another individual the right to cut in line based on the status of disability, yet they needed to make sure that the person was in fact worthy of the right. When there was some doubt as to that person’s deservingness, others were significantly more suspicious of them being a “cheater” who is “gaming the system.” ³⁸ Due to such suspicion of fraud, the concept of “jumping the queue” has been negatively associated with disability in examples that range from getting accommodations for learning disability in schools ³⁹ to getting priority in lines at a theme park. ⁴⁰ The COVID-19 vaccine allocation has extended the connection between the metaphor of queue jumping and disability.

The COVID-19 vaccination rollout started in the U.S. in mid-December 2020 ⁴¹ and since then has been described by commentators as “chaotic.” ⁴² After health-care workers and residents of nursing homes were vaccinated in the first few weeks, the fragmentation of the American health-care system once again proved itself as states differed on what groups should be given priority next. While New York, for example, decided to have persons 75 and older and essential workers, including school teachers and in-person college instructors, in the next eligibility category, ⁴³ Florida prioritized persons 65 and older, skipping over essential workers altogether. ⁴⁴ Montana, on the other hand, included “American Indians and other people of color who may be at elevated risk for COVID-19” in its next eligibility category. ⁴⁵

Questions regarding who should be given priority next based on medical conditions and disability status became urgent. In March 2020, the CDC promogulated a list of high-risk conditions more likely to make a person severely ill if contracting the coronavirus. ⁴⁶ While the CDC never meant for this list to be exhaustive, it had not been updated for months until well into the vaccine rollout. This created problems for people with disabilities like quadriplegia, cerebral palsy, Type 1 diabetes, intellectual-developmental disabilities other than Down syndrome, or rare conditions that were absent from the original list. Those conditions still posed grave danger of complications from COVID-19 but were not included in states’ distribution plans that looked to the CDC list almost exclusively for guidance. ⁴⁷

The variations in eligibility criteria, regarding age, occupation, and preexisting medical criteria, created much confusion among the population. ⁴⁸ In the midst of this uncertainty, stories about those taking advantage of the situation and faking their eligibility to get ahead and jump the vaccination queue began to dominate news media. ⁴⁹ Once again, as happens with other examples of fear of the disability con, the media played a role in creating a discourse that centers on fakery and disability status. ⁵⁰

National news outlets ran stories about two women in their thirties and forties disguising themselves as “grannies” to try to get a second dose of the vaccine, ⁵¹ on “young, seemingly healthy college students” in Texas who lined up to get vaccinated, ⁵² and on a celebrity SoulCycle instructor in New York City who presented herself as an “educator” to get a vaccine appointment. ⁵³ As one news article in Philadelphia simply put it: “healthy 30-year-olds will lie about being sick to get vaccinated.” ⁵⁴

In reality, however, the situation was painfully ironic, as many people with disabilities experienced difficulties getting vaccine appointments due to inaccessibility of the scheduling websites and the actual vaccination sites. ⁵⁵ The slow vaccine rollout also led to tragic consequences. Vincent Welch, a 35-year-old Michigan resident with Down syndrome, died from pulmonary complications related to COVID-19 while waiting to get a vaccine that was not yet fully available in the state in April 2021. ⁵⁶

While it is impossible to precisely estimate how many people did fake eligibility on the basis of disability or age, those with disabilities had to bear the brunt of the increased suspicion around cheating. In California, a mother of 15-month-old triplets who has chronic lung disease, and was thus eligible for the vaccine, had to try three times before getting vaccinated because “workers at the [vaccination] site denied her the shot. The letters [she presented to prove eligibility], they said, could be fake.” The health professionals did not agree to give her the vaccine in the first two appointments even when the woman presented additional documents. ⁵⁷ One could only assume what would have been the situation for a person from an underserved community with fewer resources, in other words, less time to spend on this issue, or lack of access to doctors to gather further documentation. This is therefore yet another situation in which the fear of the disability con creates a barrier preventing an eligible person from getting the benefit they deserve in a timely manner. Another example of a person who expressed frustration over the situation is journalist Louis Peitzman who turned to Twitter to share his experience being suspected of vaccine line hopping. He wrote: “Thinking about the stranger who replied to me, ‘It’s none of my business, but what underlying conditions qualify you for the vaccine?’ Hope she’s well!” ⁵⁸ All the while, Michael Brendan Dougherty, a senior writer for the conservative news outlet The National Review, publicly pondered in a tweet: “So what’s the reason I shouldn’t judge all the under 40 people I see posting their vaccinations?” ⁵⁹

In March 2021, Katherine Wu published a news article based on interviews with people with less apparent disabilities, like chronic illness, who decided to conceal the fact they were vaccinated due to the fear of being blamed of jumping the queue. Alongside stories of people with disabilities being shamed on social media after posting their “vaccine photos,” the story included testimonies of people with stigmatized conditions, like HIV or Type II diabetes, who did not want to disclose their vaccination status, as it meant “coming out” with a disability they had not previously revealed to others. ⁶⁰

Beyond fear of the disability con, this phenomenon of “covert vaccinees,” as Wu referred to it, is yet another manifestation of dilemmas about navigating self-identification as disabled in our society because of fear of being considered vulnerable ⁶¹ or being stigmatized. ⁶² Legal scholars have explored these dilemmas in a variety of contexts, from claiming Social Security benefits, ⁶³ to students in public school ⁶⁴ or in law school, ⁶⁵ to the adjudication of workplace discrimination cases. ⁶⁶

Although the dilemma of whether to disclose a disability in the context of vaccine priority was fleeting as the vaccine rollout picked up pace, it clearly demonstrates both the emotional toll people with disabilities have to endure when exercising rights ⁶⁷ as well as the difficulty in reducing bias and progressing the disability justice agenda more generally. ⁶⁸

C. Return to In-Person Teaching

As the pandemic progressed and the return to work and to schools grew closer, another type of suspicion of disability con developed, though this one has been more covert. While many employees do not want to go back to the office full time and give up the flexibility that comes from working remotely, ⁶⁹ some expressed health concerns due to disability or caring for someone else who is at high risk. Such concerns are protected under the Occupational Safety and Health Act’s (OSHA) general duty clause (Section 5), which requires employers to keep their places of employment “free from recognized hazards that are causing or are likely to cause death or serious physical harm.” ⁷⁰ In those circumstances, under the ADA, the employee and employer should also discuss possible reasonable accommodations such as continuing remote work. Nevertheless, pre-pandemic courts were generally hostile to such an idea, as they treated full-time “in-person” norms as essential functions of the job. ⁷¹ One arena in which the return to in-person work was specifically contentious was public school teaching.

About 20 percent of public school teachers are 55 or older, and many of them live in communities that were hit hardest by the pandemic, like Black Americans and other persons of color, and have caregiving responsibilities. ⁷² While the CDC published recommendations to ensure the safety of school staff, ⁷³ many of the teachers who still expressed concerns about health risks were backed up by strong unions. Teachers’ unions across the country demanded that better safeguards be put in place (including mask mandates, social distancing, and contact tracing) and that the return to in-person instruction only occur once transmission rates decline, a difficult demand considering the nascent steps for vaccinating children. They were not shy about threatening to strike should their demands not be fulfilled. ⁷⁴ Those threats became a reality in Chicago in January 2021 when more than half of the public school teachers did not appear at work in protest of inadequate COVID-19 protocols. The Chicago Teachers Union supported those teachers who wanted to continue to teach remotely. ⁷⁵ In February 2021, the Chicago Teachers Union reached a tentative agreement to reopen the schools. ⁷⁶ By the end of April 2021, all states started offering vaccines for teachers in an effort to get the return to in-person teaching finalized. ⁷⁷

Since schools went fully remote in March 2020 and until they returned to the classrooms in February-March 2021, the discourse around teachers’ objection to go back to in-person teaching had a “suspicion of disability con” undertone to it. Very early into the pandemic, in April 2020, reports of an FBI report distributed to companies warned them about employees faking COVID-19 infections through falsified documentation and doctors’ notes. The report cited an incident in an undisclosed “critical manufacturing company” where allegedly an employee presented falsified documentation claiming he had COVID. As a consequence, the company had to shut down its facility, send all its other employees who had been in contact with that malingerer to quarantine, and incur significant financial losses. ⁷⁸ Teachers occupy an important role for the economy to properly function, as they allow parents to engage in gainful employment. It was therefore unsurprising that such narrative regarding possible fraud by teachers soon appeared.

The “idea” that some teachers are just faking their high-risk status to not return to the classroom has probably been bolstered by the animosity toward the strong teachers’ unions and anti-union ideology. For example, in response to prioritizing teachers for vaccination, including those who objected to schools reopening, the right-wing blog Empower Wisconsin wrote: “[T]eachers who considered faking COVID-19 symptoms to protest the return to in-person learning will get their shots before teachers in schools that have safely been educating students for months in classrooms.” ⁷⁹ As one commentator who identified as a teacher in Colorado noted in a blog for a school district: “There are teachers with real issues but a hella lot are faking and we all know it.” ⁸⁰

A key point in the Chicago negotiations was expanding the criteria for medical conditions that are high risk and have people with those impairments teach remotely as an accommodation. ⁸¹ Discussions on such eligibility of teachers living with or caring for someone who has hypertension, cancer, and heart disease were at the heart of the discussion with the school district and mayor of Chicago. According to the union, as of January 2021, the district had denied 85 percent of the requests for remote work accommodations based on high-risk status of the teacher or their care recipients. ⁸²

Ensuring one’s deservingness for an accommodation or codified disability rights is a driving force in the decision-making process behind fear of the disability con. ⁸³ As I showed elsewhere, when the disability in question is less visible, and thus perceived to be easier to fake, public suspicion of disability con increases. ⁸⁴ Although it is hard to say for certain, it seems that in the case of teachers asking for remote work accommodations, the fact that the disabilities in question were in the form of less apparent chronic illnesses made the suspicion against them for “faking it” stronger. The case study of remote work accommodations during the pandemic generally, and the specific circumstances of public school teachers, therefore illustrate once more the dynamic of the fear of the disability con.

II. What Can We Learn from the Manifestation of the Fear of the Disability Con in the COVID-19 Pandemic?

Disability rights law has made issues of access and accommodations visible in everyone’s lives. A byproduct of the increased awareness of disability rights is fear of the disability con and the constant worry that people are abusing the law to gain an unfair advantage. ⁸⁵ In the vast majority of cases, the rate of actual fraud is hard to assess, yet it is also crucial to examine how the suspicion of fakery itself serves as a “social problem” that affects the lives of people with disabilities. ⁸⁶ Many times, this moral panic creates an invisible, oft-overlooked barrier for people with disabilities who desire to utilize their rights. They either are being refused the right altogether or give up asking for it in the first place because they are afraid of being singled out as fakers. The fear of disability con thus jeopardizes the law’s goal of inclusion. ⁸⁷ The COVID-19 pandemic seems to have pushed many aspects of the human experience to the extreme. This article shows how fear of the disability con played into and surfaced within the “new normal.”

This article first contributes to the theoretical project of exposing and drawing attention to the fear of the disability con by demonstrating how this socio-legal phenomenon influenced public health policy. The concerns of people using disability status to be exempt from preventative measures, like wearing face coverings or getting priority in vaccination efforts, were not previously explored using the disability con framework. The implementation of the suspicion also becomes urgent, as COVID “long-haulers” may increase the number of disabled persons in the population, and this challenges Social Security disability benefits policy as well as the number of people utilizing disability rights law. ⁸⁸ In addition, the case study of the public school teachers (and other workers) faking disability to get the remote work accommodation exposes how anti-union sentiment blends into, and may even exacerbate, suspicion, opening the door to a more intersectional as well as structural view of the phenomenon.

These perceived “pandemic disability cons” once again bring to bear a fundamental question: how much fraud are we as a society willing to endure to make sure that those who are in real need of the right or benefit actually recieve it? Admittedly, this is more of a political and cultural question than a legal one. This article’s goal is to help evaluate the fear of the disability con phenomenon in the public health and health-care arenas and to draw attention to it among researchers and practitioners in these fields. My hope is that this article can contribute to the debate on the presented question, which has a significant influence on the implementation and development of health policy as well as disability law.