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.

OPEN CALL: V Simpósio Gênero e Políticas Públicas – GT 07 Gênero, Deficiência e Políticas Públicas

The general call for VI Simpósio Gênero e Políticas Públicas is open! The symposium will be held at Universidade Estadual de Londrina, Brazil, on May28-30, 2020.

The GT 07 – Gênero, Deficiência e PolíticasPúblicas will be coordinated by Helena Fietz (PPGAS/UFRGS) and Anahí Guedes de Mello (UFSC).

The deadline for submissions is February 10, 2020.

GT 07 – Gênero, deficiências e políticas públicas

Anahi Guedes de Melo (UFSC)
Helena Fietz (UFRGS)

Resumo: Nos últimos anos tem crescido no país os Estudos sobre Deficiência, campo interdisciplinar que se propõe a pensar a experiência da deficiência contestando modelos biomédicos hegemônicos. A deficiência passa a ser vista como um marcador social da diferença, uma experiência corporificada que se dá em determinado contexto sócio-histórico. Trabalhos de teóricas feministas ampliaram o alcance do modelo social da deficiência da primeira geração, incluindo as questões generificadas dessa experiência. No Brasil, desde meados dos anos 2000, estudiosas da deficiência vêm apontado para a importância de que os estudos sobre gênero e sexualidades abordem também a dimensão da deficiência. Do mesmo modo, destacam como os estudos sobre a deficiência não podem deixar de considerar sua articulação com o gênero. Diante da necessidade de se ampliar o debate acerca da interseccionalidade entre deficiência, gênero, sexualidade, classe e raça, o presente GT se propõe a acolher trabalhos que abordem estas intersecções, ou que dialoguem com os seguintes eixos temáticos: a) Políticas de cuidado; b) Masculinidades e deficiência; c) Feminilidades e deficiência; d) A participação de mulheres com deficiência nos movimentos feministas; e) Sexualidades e deficiência; f) Direitos reprodutivos e deficiência; g) Deficiência e teorias queer e crip; e h) Políticas públicas para pessoas com deficiência.

OPEN CALL: EASST + 4S 2020 – Pa 86 Infrastructures of Care: Disability, Autonomy, Inter/Dependencies

The general call for EASST + 4S 2020 is open! The joint conference will be held in Prague, Czech Republic, on August 18-21, 2020.

ThePanel 86 – Infrastructures of Care: Disability, Autonomy, Inter/Dependencies will be coordinated by Laura Mauldin (University of Connecticut), Helena Fietz (PPGAS/UFRGS) and Emily Rogers (New York University).

The deadline for submissions is February 29, 2020.

Panel 86. Infrastructures of Care: Disability, Autonomy, Inter/Dependencies

Laura Mauldin, University of Connecticut; Helena Moura Fietz, Universidade Federal do Rio Grande do Sul – UFRGS; Emily Rogers, New York University

Engaging with recent STS and feminist technoscience scholars interested in “thinking with care” (Puig de la Bella Casa, 2011;2015;2017; Murphy, 2015), this open panel invites scholars working across disability studies and STS to critically interrogate care and autonomy. Across disability activism and the sociology of science, technology, and medicine is a critique of institutions and institutionalization. Implicit in this research is the virtue of autonomy: one should have agency to direct one’s life, live according to one’s preference, and be held accountable for one’s decisions. Care, however, is often associated with facets of dependency and stigmatized. Nonetheless, recent work in feminist disability studies beckons us to critically examine care (e.g., Piepzna-Samarasinha 2018), and STS scholars have noted that the notion of “patient autonomy” is itself determined by upstream decision-making and care infrastructures (Mol 2008). The goal of this panel is to consider what STS and disability studies might gain from taking up care as an infrastructure that does not render “autonomy” as a static virtue, but instead suggests a shifting and dynamic sociotechnical terrain. What emerging worlds flourish within such sociotechnical systems of care? We invite case studies on how infrastructures transform care relations, altering configurations of autonomy and/or inter/dependency in the process, in a variety of cultural contexts. What do we mean when we talk about autonomy in the context of sociotechnical systems of care?  How does an STS perspective trouble notions of care taken up in feminist scholarship and/or disability studies?

Contact: [email protected]
Keywords: disability, care, interdependence, autonomy
Categories: Medicine and Healthcare Gender/Sexuality/Feminist STS

WORKSHOP: ‘Living with Disabilities in the Global South’

UCL Anthropology will be hosting a half-day workshop featuring anthropological research on lived experiences of Disability covering a vast number of contexts throughout the Global South. The goal of the half-day event is to foster discussion and further develop our burgeoning collaborative network of anthropologists working on questions of disability and alterity.

We invite teaching and research staff as well as doctoral candidates and postgraduates with an interest in attending to get in touch with Kelly Fagan Robinson ([email protected]).

Sahra Gibbon (UCL) will introduce the day as well as the aims of the British Academy Newton Advanced Fellowship ‘Living with Disabilities’ project

Presenters include:
Nora Groce, UCL
Julia Sauma, Goldsmiths,
Patrice Schuch, UFRGS
Patrick McKearney, University of Cambridge
Valeria Aydos, UFRGS
Annelies Kusters, Heriot Watt
Helena Fietz, UFRGS

Chair: Kelly Fagan Robinson, UCL/University of Cambridge

Further information:
‘Living with Disabilities in the Global South’
half-day workshop at the Institute of Advanced Studies 3rd of February from 2pm-5pm
Common Ground, Institute of Advanced Studies, South Wing, UCL. BSL INTERPRETED
(Part of the British Academy Advanced Newton Fellowship two-year collaboration between UCL and UFRGS, Porto Alegre Brazil)