By Xochitl L. Mendez
The coronavirus pandemic changed the world in countless ways, and for a moment it challenged the pre-pandemic separation of — in Hannah Arendt’s terms — the Private and the Public. To Arendt, the Public is defined as the sole realm where a human can live in full, as a person integral and part of a community as an equal. Being human is only fully procurable by the presence that a person achieves when acting among others. Contrastingly, to Arendt the Private is a shadowy space without the sufficient worth to merit “being seen or heard” by others. The Private is also the place where toiling with the endless necessities of providing for one’s body resides.
The COVID-19 pandemic challenged this separation. As many people and their loved ones fell seriously ill, an overwhelming portion of our nation found themselves for the first time living a struggle that previously was familiar mainly to those who suffer from chronic medical conditions. Millions were locked down and marooned at home — a radically novel experience to many, yet one that is sadly commonplace to a considerable number of individuals who live with disability and illness every day. Large portions of the workforce found themselves restricted to working remotely — a reality habitual to individuals who lack access to the workplace. All of these experiences suddenly stopped being private experiences — they became critical concerns discussed by a citizenry of equals, worth “being seen or heard” by others, and demanding policy and political action.
An important reason, in my view, of why society has been so slow in embracing the rights of individuals with disabilities and chronic conditions, as well as in making meaningful advances for their inclusion across the board, is precisely because we as a society believe in preconceptions that assert that attending to one’s body, or dealing with its perceived limitations, must necessarily be relegated to the Private and not to be disclosed in the Public. Further, what lives in the Private is often the subject of doubt and is discounted with suspicion. For far too long, for example, maladies such as chronic fatigue, brain fog, and pain were seen with skepticism as ‘exaggerated,’ ‘made up,’ or ‘unexplained illnesses’ yet they gained legitimacy once long COVID inescapably made them a public concern.
The dichotomy between Private and Public — this hiding and showing to others — is especially fraught in the workplace. It is quite telling that so many members of the workforce report feeling that their efforts and labor remains unnoticed and want their work to ‘exist,’—to be seen and be recognized by others in Arendtian terms; to be assured that their toiling is productive; that they will leave something behind in the social world. Yet it is precisely invisibility what is ordinarily sought in the workplace when it comes to illness, disability, and chronic conditions.
Disclosing the extent of an illness, or what may be seen as an impediment, is usually an uncomfortable choice for the average worker. On the one hand, disclosure is often necessary to obtain needed accommodations, and is also an appeal to understanding and flexibility. On the other hand, this disclosure can induce unjustified assumptions and discrimination. Presenting an impairment or even a difference — even one that can be easily accommodated or that bears no relationship to performing on the job — still makes the person, unfortunately in the eyes of many, ‘disabled’ and less productive. Even those who struggle with disabilities and illness may themselves internalize these biases, or defensively respond to them in others, and engage in “information control.” That is, choosing to not disclose, or at least attempt to minimize, the visibility of differences, illnesses and disabilities. Taken to an extreme, in order to conform with pernicious expectations and constant prejudices, a person suffering from illness or disability may, to echo Arthur Frank, “act according to others’ cues of what they want from them, which is to disappear.”
This social pressure to hide away differences and uncomfortable truths into this Private sphere is perhaps also one of the reasons why recognition is so difficult to attain for those who work (as indeed this is real work) to manage their disabilities and medical conditions as they strive to participate in the workplace and the world. Further, once socially classified as ‘in the private,’ the concerns and realities of people with disabilities are thus set aside — discounted as ‘private’ peripheral affairs, and not for the public to worry about. How then could experiences that are lived in ‘privacy’ lead to the concentration of will, effort, and resources needed to change deep-seated structures and institutions to be more equitable and inclusive?
I argue that the ‘needs’ of people who find themselves confronting disability and illness should not be marginalized to the social Private, nor hidden in the workplace, as they are simply modes of the human condition, that is, resulting of a human body that requires care. These needs are not ‘special needs,’ but in reality, universal needs which should be seen as a condition of accepting the body and our own humanity in health and sickness and across its wide variation as it exists in the natural world and as it changes as we age.
Arendt observed that “the disappearance of prejudices simply means that we have lost the answers on which we ordinarily rely without even realizing they were originally answers to questions.” As we challenge and change the demarcations of the Private and the Public, the pre-pandemic question, ‘What is work supposed to look like?’ should be reformulated to: How do we go about redefining work given the capabilities enabled by today’s technologies while we embrace the vulnerabilities that the body imposes on us? How can we reshape the Private and the Public to give recognition to alternate but no lesser modes of the human condition that include disability and illness, while respecting the varying needs of the individual for autonomy and confidentiality?
Redesigning work with these questions in mind promises to be a challenging yet rewarding exercise in personalization and in developing flexible best practices in the workplace given that each worker is unique in terms of needs and conditions—and different in their comfort levels of disclosure and wants for confidentiality. Nevertheless, this focus on a work culture aligned to the needs of workers with disabilities and chronic conditions — whether pandemic-related or not — can lead to innovations, experiments, and formative evaluations that will result in a better workplace and a better world. In Arendtian terms “work produces an objective world that constitutes our shared human reality” and work is what builds the “common ground that joins us into a community.” Improving work, and making it more accessible and equitable, is improving the world — something we can aim for as we learn and enact the lessons of the pandemic.
Xochitl L. Mendez is a Ph.D. Candidate at Lesley University.