Institutions must do more to accommodate those with long Covid
More and more colleges and universities are moving beyond Covid-19 and advocating a return to pre-pandemic standards. But these decisions often ignore the fact that many students and employees have or are at risk of developing long covid. Long Covid leads to countless symptoms including extreme fatigue, brain fog and shortness of breath. It can be a disabling condition parallel to other chronic diseases. In the United States, it is estimated that up to 2.4 percent of the workforce is now out of work due to the condition. In Great Britain, 7 percent of workers have had or currently have Covid for a long time. These numbers will only increase as infections continue.
We have direct experience with long Covid in academia, either as long carriers ourselves or as allies. We have witnessed a wide range of responses from our employers, ranging from very generous to repressive. Our experiences have highlighted what disability advocates in academia have long pointed out: the intersectional issues of inclusivity, invisibility and academy culture of ableism. Chronic post-infectious diseases disproportionately affect women. And women of color (Black woman above all) experience more chronic diseases because of structural racism, sexism and classism. At the same time, these groups are disproportionately burdened with service work and work that involves promoting diversity.
We call on colleges and universities to develop the following transparent and personalized strategies to explicitly address the needs of people with long Covid and other disabilities:
Rethinking medical assessment. Employees with visible disabilities and well-defined and accepted illnesses may be able to communicate directly with their facility’s disability coordinator. Employees with invisible, chronic and complex illnesses and disabilities have an additional burden of proof to convince employers that they are indeed ill and need sick leave or accommodation.
This burden of proof is difficult for long-haul carriers. The lack of testing in the early months of the pandemic, the potential for development of long Covid after mild infection, and the absence of biological markers for long Covid make it difficult to obtain a diagnosis. In addition, the duration and severity of symptoms vary individually. Some may recover after a few months, while others may suffer for years. Some may experience different or new combinations of symptoms over time. Rising and falling symptoms complicate navigating our medical discharge binary system, which tends to classify a person as either too sick to work or fully recovered.
Therefore, a one-size-fits-all policy is not appropriate for medical evaluations of complex illnesses and may violate disability law. Considerable flexibility, understanding and compassion are required. Policies should be consistent, transparent and fair to employees. The process must also take into account that faculty members have responsibilities that do not end when they go on sick leave. They still must supervise graduate students, respond to requests for student letters of recommendation, and meet grant and funding agency deadlines.
Employers should also adopt transparent and fair medical assessment procedures. There should be a central office responsible for processing requests for medical leave and disability accommodations. The office should trust employees and act as their advocates, given the inherent power imbalances and isolating nature of the medical leave and accommodation process. This includes not unfairly imposing rigid medical documentation requirements on employees that have exposed patients with disabilities to gas lighting from skeptical providers and institutions. These have been particularly damaging to patients with invisible illnesses and disabilities, forcing them to act as both patients and advocates at a time of great vulnerability.
Provide accommodations beyond ADA requirements. For people with disabilities who can work with accommodations, colleges should make the accommodation process transparent, accessible and efficient. Long Covid may be a recognized disability under the Americans With Disabilities Act (or other disability law). Employers should listen to their employees who present with disabling symptoms, whether or not they have a diagnosis. Employers need to be satisfied that people seeking accommodation actually need it.
The ADA requires employers to respond to accommodation requests in a timely manner. Although the ADA does not define what constitutes a timely manner, a formal decision must be made within one week in most cases or two weeks if a meeting must first be held with the employee. . People with chronic illnesses and disabilities have suffered enough; the accommodation process should not be another endless battle they have to fight.
Make flexible layouts the norm. Employees with disabilities are best qualified to determine what accommodations are right for them. Exactly what these look like employees with long covid is as varied as the condition itself. Instructors may need classroom technology that allows for seated instruction, access to a safe place to lie down, proximity to bathrooms, or guaranteed nearby parking spaces. Employees may need to limit activities like screen time or social interaction, only work certain hours of the day when they have the least symptoms, take regular breaks, or work in a scent-free environment to prevent severe allergies and chemical sensitivities.
Long Covid can be like a Whac-a-Mole game with unpredictable symptoms, requiring accommodations to change as symptoms evolve. For many, remote work is a essential part of the long covid recovery and alleviation of symptoms. Fortunately, the pandemic has taught us that all aspects of faculty activities can be conducted safely and efficiently remotely.
As most establishments return to pre-pandemic standards, measures to prevent the spread of airborne viruses, such as mandatory mask-wearing and adequate ventilation, remain essential. A person wearing a mask, surrounded by unmasked individuals, is not sufficiently protected. Employers should provide appropriate accommodations for at-risk groups, including long haul. Reinfection can jeopardize their recovery and worsen long-term symptoms, with the possibility that reinfection will render them unable to work at all. It is also important to recognize that while many long-distance carriers can work with accommodation, far too many have not been able to return to work.
Enable peer-to-peer support. Long Covid is a lonely and isolating experience for most sufferers, cutting them off from their existing college networks. While data protection and privacy remain essential, individuals must be able to choose what personal and business information they disclose and to whom. Institutions need to create safe networks so that people with disabilities – and their allies – can support each other. We also recognize the difficult balance between, on the one hand, standing up for what we need and speaking out against discrimination while protecting our privacy and, for some of us, our career prospects.
Combatting the academic culture of ableism. Institutions need to reflect on the ableist nature of many pre-pandemic norms and create a culture of inclusivity and accessibility for students, staff and faculty. They must also recognize how ableism intersects with issues of sexism and racism.
Institutions should take other necessary preliminary steps. They should require disability awareness and education, including implicit bias training for all members of the campus community; provide inclusive online options for all meetings and events; remove scented products from campus spaces; adjust occupancy timers to reflect the limitations of disabling conditions; offer flexible workspaces, hours and deadlines; offer accommodations to candidates in the labor market at all stages of the application process; examine the impact of chronic and disabling illnesses on the research and teaching portfolios of job market candidates, particularly for people of color who have been hardest hit by the pandemic; granting paid sick leave to non-tenured and casual faculty members to reduce the disparate number of disabling illnesses; and ensuring that networking opportunities are not limited to meals, receptions or in-person events.
These changes are just the beginning. Academia needs to address entrenched systemic practices that have long excluded some people from full participation. This includes rejecting the definition of different organs as the problem. Bodies are not the problem. Institutional policies structurally produce disability by devaluing certain bodies while prioritizing the needs of others. The mass disability presented by the long Covid presents an opportunity for institutions to consider this culture of ableism.