What the experience of Covid-19 tells us about disability, work, and accessibility
By Bernardo Oliveira, Daniela Navarini and Valéria Aydos
This article is part of the series: Dispatches from the pandemic
The ‘new normality’ in the world of work:
Bernardo, one of the authors of this piece, has Larsen’s Syndrome, a rare genetic disease. Because of this, he has difficulty traveling long distances and needs accommodations. He says that on the first day of work on January 2020, in an effort to find the classroom where he would teach courses on Anthropology and Disability, his back “stuck,” immobilizing him for two days. When he requested accommodations from his university, administrators denied his original requests. The only possibility of working would be reducing classes and preparing extra-class activities for students. In other words, ‘remote work’ had not been a possibility of ‘reasonable accommodation’ offered to Bernardo so that he could carry out his activity without hindrance to the quality of his work. Ironically, after the outbreak of COVID-19, the university communicated that “until the end of the semester, all courses should be offered remotely.” It is worth mentioning that universities expect all students to pay full tuition for remote learning (meaning they are “valuing” it the same as in-person teaching).
Anahí is a deaf person and, her main request during in-person academic events is for real-time captioning, which is continually denied due to the high costs. It is customary, then, to ask people to speak one at a time and not to place the microphone in front of the mouth, so that she can follow the lines by lip-reading. Before the pandemic, she was forced to turn down invitations to online events due to communication difficulties and weak transcription technologies. Now, however, research group meetings and evaluation committees have also gone online. She would have been excluded from the main activities of her academic life if it were not for her concerted effort to participate with a combination of accessibility resources, such as cochlear implants, instant transcription, and virtual platform chats. In other situations, participation necessitates Skype’s automatic captioning function, or the activation of Zoom’s closed captioning feature, which is done by a professional in the field. Also, she expresses concern about ‘a world of masks,’ in which one’s hidden lips – already shown on TV news – would deprive her of communication.
Thiago is a person with low vision who works as a public servant, an activity he does with accessibility tools at his workplace. Technology adaptations at his home are not sufficient to carry out his work, mostly due to isolation and the remote work policies. Additionally, there are no “human resources for accessibility” available to exercise his profession in equal conditions with other colleagues at the workplace. Thiago’s right to have a person, who can, for example, read what the software could not read on the computer screen, was not taken into account in the ‘diversity management’ of this new reality.
The above accounts led us to several issues that, if they were already present in the lives of people with disabilities in the world of work, are now ‘wide open’ to everybody. The social context that emerged during the COVID-19 pandemic begs the following questions: what is really at stake in the social inclusion of people with disabilities in working environments? How are accessibility issues being valued and operationalized in the practice of the world of work?
According to the UN (2006), “people with disabilities are those who have physical, intellectual or sensory impairments, which, in interaction with various barriers, can obstruct their full and effective participation in society with other people.” This conceptualization emphasizes a shift in the understanding of disability from a natural consequence of a body with injury (biomedical model) to body diversity in interacting with a socially excluded society (social model), assuming disability as a relational, social, and political issue. Advances such as the American Disability Act (ADA) and labor market quotas in Brazil have been fundamental in combating the ableism encoded in justifications for not adapting the workplace so employees with disabilities can work effectively. That also reflects the erroneous perception of disability as an individual problem to be “adjusted” (or, in most cases, eliminated) and the non-perception that it is the society that must think about new management forms for diversity and not for generalization.
This journey of political and social struggle of People with disabilities towards a conception of inclusion as a movement was not easy at all. In the late 1960’s social movements like the “Rolling Quads” and activists like Edward Roberts and John Hessler started to work towards eliminating barriers in scenarios where some people with disabilities were kept in their homes without any access to civil rights. They have gradually gained rights and access to spaces for health and education, such as mental health units, and the integration of these spaces into broader society, as in the case of resource rooms in regular schools. Such models – exclusion, segregation, integration, and inclusion – have been designed to analyze working conditions for people with disabilities.
New technologies that allow for teleworking have heightened the debate about the confusion between public and private. Also, the non-regulation of these duties has generated more exploitation of precarious work, including more sick workers in areas that had already shifted to this reality prior to COVID-19, mainly women whose domestic chores and childcare are added to work obligations.
Under the allegation that the Pandemic situation imposed a nonstop “necessity,” we are experiencing the transformation of several sectors that previously did not consider the transition to virtual platforms. As we read in Bernardo’s account, the business justifications for either not hiring or making tasks and working hours more flexible for people with disabilities, or that technology and workers’ skills were lacking, seem to have quickly fallen apart. Now the “necessity” no longer results in the promotion of accessibility for inclusion but from not wanting to limit productivity.
The so-called “new normal” of the pandemic has raised the possibility of producing new social relationships and transforming forms of personal and work relationships. Now, Bernardo works on equal terms as his colleagues. Adaptations are quickly made, and new methods are being improved, such as the adoption of speech transcription technologies for the participation of people with hearing impairment or deafness in teleconferences, as the ones used by Anahí.
However, other necessary tools are not being considered, such as “assisted work” for people like Tiago. Their experiences highlight the prioritization of capital over people and the inability of public agents and society in general to meet the specific demands of the population. At the same time, the pandemic socializes limitations and uncovers our everyday ableism. The daily lives of people with disabilities are so full of complexities and require immense individual effort to be carried out so that the person “fits” and then “integrates” into so-called employability, transforming a process that should be social into “individual accountability.”
At a deeper level, we must recognize that there are bodies—some considered disabled, others not—with varied abilities and functions. Society must take become stake-holders in the struggle to transcend the historical-political meanings of simplistic binary thoughts—such as disabled / non-disabled and sick/healthy. Alison Kafer observes in the book Feminist, Queer, Crip that Crip Theory rejects these dichotomies and claims the crippling of the “different” theory. To ‘cripple’ practices is to recognize the ethical, epistemic and political responsibilities of questioning all the preexisting conditions under which we all live; it is to realize that this crippling also benefits those who are not interested or invested in this transformation. Perhaps the current pandemic context stretches the social fabric until it ruptures the standard ways of life. Perhaps reflecting upon Crip Theory shows us a crooked walk, in which ableism is no longer the model to be mimicked so that other walkings are possible and more bodies exposed. Perhaps the pandemic will bring us a new understanding as radical as the notions of access and inclusion of all.
A Portuguese version of this text was published in the site of ANPOCS (Associação Nacional de Pós-Graduação e Pesquisa em Ciências Sociais). It is available here.
Bernardo Oliveira holds a PhD in Anthropology and is currently a professor at the City College of New York (CCNY), and a researcher of Group for Studies on Anthropology and Disability of the Federal University of Rio Grande do Sul (GEAD/UFRGS).
Daniela Navarini is a psychologist, a master’s student in Social and Institucional Psychology (UFRGS), a member of the N-Pistas Núcleo de Pesquisas Instituições, Subjetivação e Trabalho em Análise(s), as well as a researcher of Group for Studies on Anthropology and Disability (GEAD/UFRGS), in Porto Alegre, Brazil.
Valéria Aydos holds a PhD in Social Anthropology and is currently a postdoctoral fellow in Anthropology at UFRGS. She is also a member of the Brazilian Association of Anthropology (ABA) Committee on Disability and Accessibility, and researcher at of Group for Studies on Anthropology and Disability (GEAD/UFRGS), in Porto Alegre Brazil.