We write this introduction very aware of our pandemic pasts, our present moments, and our imagined futures, how relative and fluid these temporalities are, and how they are experienced in crip time (Barnartt 2010; Kafer 2013; Samuels 2017). In the time of Covid-19 so much changes so quickly, yet also, in lockdown-life, it feels as if nothing has changed in well over a year. One might submit an abstract to discuss something Covid-19-related in the winter and by the spring the context and hence the discussion has changed completely, due to national elections, or vaccine developments and dissemination processes, even as we track changes in our daily lives by how long our hair and beards are growing. Experiences of previous pandemics serve as a guide when we consider that what we mean by "long haul" Covid-19 has already shifted from meaning symptoms that persist for weeks to months beyond the time of expected recovery. To consider this in a historical context, Post-Polio Syndrome – the long-term physical consequences of surviving polio — were not institutionally identified or systematically studied until over three decades after the polio vaccine was available (Post-Polio Health International 2021). This is partially because, for many people, that's how long it took for the physical consequences to manifest. Just as the polio epidemic created new disability experiences and was a catalyst for disability activism and policy transformation, currently activists and researchers are discussing intersections of long-haul Covid-19 with related post-viral fatigue or connective tissue conditions such as Ehlers-Danlos Syndrome (EDS) and Myalgic Encephalomyelitis (ME). We can only imagine where this might lead in the future – and what research directions or policy transformations might result.
We are an international group of guest editors located in North America, Europe, and South America. As we start writing the introduction to our special issue on Disability and Covid-19 in April 2021, almost one year has passed since we started organizing this issue and so much has changed. In April 2020, Pamela Block's former home in Long Island, New York had far more cases than the entire country of Canada. One year later in April 2021, most of her friends and family in the US had been fully vaccinated while cases in her new home in Ontario, Canada was surging, there was a vaccine shortage, and Pamela was not yet even partially vaccinated, and would not be until July 2021. The situation in Brazil is also far from being stabilized; Anahí Guedes de Mello and Éverton Pereira were also not yet fully vaccinated with the second dose and faced with an even more dire situation with never-ending or partial lockdown in several States and sanitary, funerary, and health systems in collapse. This collapse has been exacerbated by the Bolsonaro government, which became involved in the corruption of the purchase of vaccines and has instituted and continues to deploy austerity measures including the discontinuation of health services and anti-corruption programs that might have helped in this crisis. See Sakellariou et al (2020) for a more in-depth analysis of the government responses to the pandemic in Brazil, and also in Chile, Argentina, and Peru, and how these largely ignored the needs of disabled people. Pereira et al (2021) also notes how Brazil has been responding to the Covid-19 outbreak among people with disability.
In addition, Éverton spent the whole of 2020 in Spain. In that country, he experienced measures of control of Covid-19 that were very different from what people are experiencing in 2021 in Brazil. In addition to a strong lockdown scheme, Spain expanded social policies that supported the population throughout the restrictive measures. Anahí received her first dose and Éverton had not yet been vaccinated with any dose as of early July 2021. Dikaios Sakellariou spent most of 2020 and part of 2021 in successive lockdowns in Wales, United Kingdom, where the cases have started surging again, despite high vaccination rates- Dikaios, in his 40s received his first shot in late April 2021, reflecting the approach (and the privileged position of many high-income countries which have enough vaccines to inoculate their population) that the UK took, which was to vaccinate as many people as soon as possible, at least with the first shot.
We decided to produce a special issue on disability and Covid-19, being acutely aware of the structural disadvantages disabled people face and how existing disadvantages were exacerbated, and new ones emerged (Rotarou et al. 2021). We sent out a call for abstracts in May 2020 and by the deadline in August 2020 we had received an astounding 85 abstracts from all over the world. With difficulty we reviewed this impressive group of submissions and eventually accepted 28 of these abstracts and sent 17 full manuscripts for peer review and eventual acceptance. The contents of this collection of articles are located within the temporality of the first months through the first year of the pandemic. It is a significant achievement for all involved, and a lasting record of what we went through, but necessarily bounded by the limits of the timeline of the special issue. Already so much more has happened, there is so much more to say and indeed we expect to hear so much more from our collection of authors and many others for decades to come.
We are profoundly grateful to our peer reviewers who were so willing to accept this extra labor and provided such thoughtful and supportive feedback that as one of our authors said:
I think these are the most constructive and insightful comments that I have ever received (and having published over 20 articles in peer-reviewed journals, that is high praise). These comments have not only helped me improve this essay but broadened my education and approach.
This sentiment was echoed by many of our authors, so we send a heart-felt thank you to our wonderful peer reviewers for providing such supportive guidance and mentorship. Covid-19 experiences have been intense for our authors, and some could not submit their manuscripts in time for this special issue. We encouraged the authors who were unable to meet our timeline to submit to DSQ when possible, and so it is likely that there will be more essays and research articles to come, and these will be published in subsequent issues with a note that the articles were originally intended for this special issue and a link back to this collection. We are also thankful to the research assistants who helped with copy-editing: Shaela Kahn, Bradley Karat, Eesha Sarfraz, and Tyne Mackenzie Sera.
Our call was intentionally broad, wanting to consider a wide range of disability experiences during this pandemic. Some key themes present in this collection include: Abdication of government and structural safety nets, and individualization of responsibility; Dangers of institutional settings; Disabled Children; Structural determinants of vulnerability including shortages, barriers and dangers to accessing services, supports, medicines, supplies and technologies; the particular precarities of disabled people of color due to racism, ethnocentrism, and white supremacy; Concerns with medical triage protocols and social policies that disadvantage disabled people (imagining that disabled lives are not worth living or predicting future life-years and the imagined quality of those life-years); Impact of isolation, trauma of loss, and new disabilities; Negative impact on ability to work but also increased access in some specialized areas of employment and education; Adapting and improvising in the face of the changes wrought by the pandemic; Finally, we the editors join the authors in asking what does "back to normal" mean?
Individualization of Responsibility
The individualization of the responsibility to 'stay safe' that has been observed around the world has disadvantaged disabled people, and other groups of the population who, for example, had to go out to work, often using public transportation. In the UK, the government sent 'shielding letters' early on in the pandemic to people deemed to be 'vulnerable', thus transposing responsibility from state to individual actors and constructing, or further reinforcing, vulnerability, which rather than being a characteristic of individuals, is structural and multifactorial. Brooks argues convincingly how New Jersey's public health messaging was inherently ableist, shaming individual actions rhetorically connected to "stupidity". In other contexts, such as in Brazil, existing structures of governmental support simply disappeared leaving people to struggle together to find ways of addressing their needs outside of government support. In a similar context of limited state support, Rodriguez considers crip resistance to the politics of austerity with which Spain's government has reacted to the Covid-19 pandemic and explores creative tactics for crip advocacy and visibility, which are become essential survival mechanisms. Felupchuk discusses the need to improvise alternatives to familiar stims due to fears of contagion.
Similarly, it is not unusual for experiences and needs of disabled people to be erased from public discourse. With rare exceptions, different entire regional and national contexts did not consider the needs of disabled people when deciding the best strategy to combat the pandemic outbreak. At the extremes of individualism, Grunawalt discusses the ableist necropolitics of the Anti-Mask movement which prioritizes personal comfort and convenience over the safety and survival of others. The World Health Organization (WHO) stated that disabled people are more vulnerable in situations of conflict or catastrophe (WHO, 2018). However, despite this WHO statement and the Nations United (UN) proposing a disability inclusive response to Covid-19 (UN, 2020), governments adopted few concrete actions to benefit disabled people. Perhaps the pandemic of Covid-19 will be a big test to check consistency and effectiveness of the Convention on the Right of Persons with Disability as articulated around the globe.
As noted earlier, in comparison with another groups, there is very little discussion about disabled people's experiences in the Covid-19 pandemic. There is even less talk about disabled people living in institutions such as prisons or "asylums" though we know from anecdotal evidence that Covid-19 loss of life within institutions has been massive and those surviving experience violations of dignity and quality of life inherent in total institutions made even worse than before. In Brazil, a report written by the Human Rights Watch (HRW, 2018) denounced the rights violations that were experienced by disabled people living in institutions, with little or no possibility of leaving. Battalova and Schotland discuss how, in the United States and Russia, activists used the opportunity of the pandemic to fight for release of individuals from prisons and institutions. Schotland identifies the risk of Covid-19 faced by people in prison which is disproportionately faced by people of color and disabled people. In other contexts, we have witnessed policy responses in the opposite directions. In the face of massive loss of lives in Canadian institutional settings due to the unsafe crowded facilities which made it impossible to isolate contagious individuals, the policy response was to build yet more nursing homes, rather than consider alternatives to large scale settings (Long Term Care 2021).
Valim et al also shows the overlap of two epidemics: the Zika virus and Covid-19. Peoples and families who were at the center of an international debate around the Zika virus (which has lost steam over the years) are now also experiencing the challenges posed by the coronavirus. The difficulty with the absence of therapies, medical supplies, and other supports for the disabled children, the need to restructure the arenas of relationship and mutual care - moving from face-to-face to virtual - and a context of greater austerity on the part of the government, makes families feel that they are returning to what they experienced at the beginning of the Zika virus epidemic.
The important and often neglected context disabled children's pandemic experiences, as reported by Valim et al, is also discussed by Drummond et al. Presenting quantitative data obtained from official Brazilian government datasets, the authors emphasize that children and adolescents with disabilities are more subject to serious illness due to Covid-19. In addition to illuminating these rarely discussed issues, Drummond et al reveals the difficulty in obtaining data on people with disabilities in official Brazilian datasets. This has already been pointed out by Pereira et al (2021) and Reichenberger (2020), and it reiterates the invisibility of people with disabilities in public policy planning contexts.
Several of the authors chose to focus on structural vulnerabilities that are rendered visible in high relief due to the additional strains of the pandemic. Das et al. and Wickenden et al. discuss the disproportionate death and disablement tolls in neighborhoods and regions where people have been forced by economic necessity to work public facing jobs and lack access to high quality health care. Ableism and access barriers that could be negotiated more easily in non-pandemic times became significant and, in some cases, emotionally devastating and life-threatening barriers for some disabled people. Delays or inability to get needed medical supplies, disruption of needed appointments with health providers or needed medical procedures take their toll even when people manage to avoid catching Covid-19 itself. Parris and Hong point out that, due to hearing impairment and deafness, masking has created barriers for them in understanding and communicating for daily life tasks and for teaching as well. Hong also discusses the spike in anti-Asian sentiment that has accompanied the pandemic. Shelton discusses the increased risks for intimate partner violence created by lockdown measures.
As with structural vulnerability, we must consider how the national or local realities impact lived experiences around the globe. The numerous lived experiences of disabled people during Covid-19 in countries of the Global South include the pre-existing challenges of accessing income for basic livelihood. Beyond the challenges that come with Covid-19 as experienced by disabled people, determinants like social class and race are important to think about when considering the consequences of coronavirus in the Global South. The measures adopted on a global scale have been based on the strategies that were successful in a few countries (usually coming from Northern countries and reproduced in Southern countries), often ignoring success stories (at least in the first stage of the pandemic), such as Vietnam. Those strategies have not made sense (or not as much) in other contexts because, beyond what the realities of the pandemic outbreak, different countries or communities experience specific structural problems and unique social determinants along lines of social class and race etc. Thus, certain universally adopted slogans or aims could not be fulfilled, either due to the structural processes that made people's lives more difficult, or due to blatant government negligence and absence of public policies. As the pandemic situation worsens these structural issues and the global and hegemonic strategies disseminated to fight the Covid-19 outbreak miss the mark, failing to recognize social groups or individuals' particularities, how do people and groups maneuver to increase their chances to survive? The authors on this special issue discuss these problems and point out the strategies used in different contexts in the pandemic outbreak.
Meinerz et al and Valim et al. discuss the peripheral context of Northeastern Brazilian cities where the hard realities of disability lived experience and existing barriers were made even more difficult during the pandemic due to financial losses and the absence of the State. These difficulties, which intersect with social class and many different types of barriers, are addressed by forming informal networks of people who helped each other to find solutions. The formation of these interdependent networks combatted the process of individualization of responsibility and were an adaptive strategy to combat social realities where disabled people and their experiences are rendered politically and socially invisible.
The New Abnormal
One of the consequences of the Polio epidemic was a legacy of activism and a fundamental transformation of technologies, supports and policies to make the United States and many other countries more accessible. We are already seeing the emergence of new technologies and socialities that have come into being as a result of the Covid-19 pandemic. We may have Zoom fatigue but we are also able to be present in the (Zoom) virtual room to listen to people we might never have had access to in-person. International collaboration has been made easier and the flexibility of online work and learning has been one of the ways we compensated for our isolation, our inability to work and learn in person. In the midst of physical isolation, we have been granted levels of intimacy and access that some of us have never experienced before. Technology and its uses can also create new challenges and the relationship between accessibility, disability and communication technology can be further problematized in a time of pandemic, as Ellis eloquently discusses.
In some locations around the globe people are mandated to return to working in-person but in other contexts people are encouraged to continue working entirely or partially from home. The same is true with learning online. Suddenly, after our crash course in 2020-2021, university professors, secondary and primary schools have learned that while remote learning is harder for some, for others it makes learning possible. As Doonan points out that the pandemic has meant that some disabled peoples "daily normal" have become the "new abnormal" for vast portions of the populations. In some cases, those new to distance learning and working are eager to return to older ways of doing things but sometimes, there is a willingness to fight to keep aspects of the "new abnormal" perceived as personally or structurally beneficial. Disagreements about how to constitute futures of work and learning are emerging as labor struggles and fights to sustain the increased financial and disability access that new modalities have made possible.
People at the intersections of disability and other social identities are at the highest risk but also have the most expertise in survival strategies. This includes the experiences of disabled people of color, disabled LGBTI+ and also those who have been living with complex medical conditions: reliant on technology and human supports or complex co-existing diagnoses (e.g. psychiatric and intellectual disability). Let us look to past pandemics, such as the Polio pandemic for lessons on how to survive and move on in the new reality. Polio to Post-Polio, Covid-19 to Post-Covid-19. Let us continue to advance models of interconnected research and education. We have not just lost things due to Covid-19, but we have also gained things: strategies, technological savvy, networks of interdependent care. Let us not lose what we have gained.
- Barnartt, S.N. (2010), "Disability as a fluid state: Introduction", Barnartt, S.N. (Ed.) Disability as a Fluid State (Research in Social Science and Disability, Vol. 5), Emerald Group Publishing Limited, Bingley, pp. 1-22. https://doi.org/10.1108/S1479-3547(2010)0000005003
- Kafer, Alison (2013). Feminist Queer Crip. Bloomington: Indiana University Press.
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