Disability in the Time of Pandemic: Volume 13

This chapter addresses the growing need to analyze the relationship between COVID-19 vulnerability and disability status at the national scale in the US. It presents a quantitative study that seeks to determine whether US counties more vulnerable to the COVID-19 pandemic contain significantly higher percentages of people with disabilities (PwDs), in general, and socially disadvantaged PwDs (based on their ethnicity/race, biological sex, age poverty, and employment status), in particular.

Vulnerability to COVID-19 is measured using the COVID-19 Pandemic Vulnerability Index (PVI) model developed by the National Institute of Environmental Health Sciences, which integrates multiple variables into relevant indicators that are weighted and combined to formulate a county-level PVI score. These scores are linked to a wide range of disability-related variables from the 2019 American Community Survey five-year estimates. Statistical analyses are based on multivariable generalized estimating equations that extend the generalized linear model to account for spatial clustering.

US counties more vulnerable to the COVID-19 pandemic are characterized by significantly higher percentages of PwDs, when vaccination is considered in estimating the PVI. These counties also contain significantly higher percentages of ethnic/racial minority, female, below poverty, and unemployed PwDs, in multiple timeframes of the pandemic.

The findings provide important insights and new knowledge on the relationship between COVID-19 vulnerability and socially disadvantaged PwDs in the US. The county-level associations highlight the need for additional data and more detailed analysis to examine the differential impacts of this pandemic on PwDs, as well as formulate appropriate intervention strategies.

In this chapter, we examine the unique and heightened negative impacts of the COVID-19 pandemic through tracing how the preexisting social conditions of exclusion and precarity in which many disabled people live, effected access to safe, affordable, and accessible housing in Canada. We then illustrate the reverberating impacts housing choices have on how people with disabilities lived, lived well, and how they faced barriers to living well during the COVID-19 pandemic.

Using an intersectional livelihoods approach, we analyzed semi-structured interviews and focus groups with 32 diverse people with disabilities, 12 key informant semi-structured interviews, as well as academic and community literature and a social media scan of key disability advocacy organizations in Canada.

Pandemic-related policies in Canada often excluded people with disabilities, either overlooking barriers to access and safety, which exacerbated the already precarious livelihoods of people with disabilities or over-emphasized the usefulness of social adaptions such as work from home. These exclusions had more profound consequences for people with disabilities from historically marginalized groups, as they often faced increased barriers to livelihoods pre-pandemic, and disability- or care-specific policies failed to consider intersectional experiences of discrimination. People with disabilities formed communities of care to meet their needs and those of their loved ones.

To achieve a responsive policy response that addresses the cascading impacts of risk and care, it is necessary for governments to engage, early and often, with people with disabilities, disability leaders and organizations in emergency planning and beyond.

Although social distancing measures enacted during COVID-19 prevented the spread of the virus and acted as important coping mechanisms during this stressful time, they also contributed to loneliness and anxiety. The pros and cons of social distancing measures were especially relevant among people with disabilities and chronic health conditions – a high-risk group concerned about infection through contact with non-household members and visiting public places like school, healthcare providers, and work.

Drawing on data from a national online survey (N = 1,027) and in-depth virtual interviews (N = 50) with Canadians with disabilities and chronic health conditions, we examine the positive and negative effects of three types of social distancing measures – avoiding public places, transitioning to remote work or school, and avoiding contact with non-household members – on perceptions of increases in anxiety and loneliness during the pandemic.

We find that the relationships between engaging with social distancing measures and anxiety and loneliness could be positive or negative, with measures acting as both adaptive and maladaptive coping mechanisms. Although avoiding public places or non-household members and transitioning to remote work or school often resulted in increased anxiety and loneliness, respondents also described situations where these measures helped them cope with concerns about catching COVID-19.

Our findings highlight potential implications for public health policy in allocating different coping resources among marginalized groups during times of crisis and demonstrate the importance of using a social model of stress, coping mechanisms, and mental health.

In India, people with disabilities (PWDs) have emerged as one of the most vulnerable populations during COVID-19, particularly those living in informal settlements. Although the government has made efforts to ensure healthcare access for all, these efforts seem inadequate considering that PWDs' needs vary greatly depending on type and degree of disability. The purpose of the study is to identify barriers in healthcare access for PWDs in Mumbai's informal settlements during COVID-19.

A qualitative approach employed multiple case study methods. Eight PWDs were selected as cases from the informal settlements of M-East Ward, Mumbai. The data was gathered using observation and interaction with the PWDs. Data were analyzed for emergent themes to explore the presence, meaning, and relationships of barriers faced by PWDs accentuated by pandemic.

Findings indicate a complex and compounded interplay of structural, administrative, psycho-social, and technological factors which created numerous challenges for PWDs to access healthcare provisions during pandemic. These factors include socioeconomic challenges, the built environment inaccessibility, limited transportation facilities, and lack of trained healthcare personnel to support PWDs.

This research adds to an understanding of the barriers faced by PWDs and provides insights for formulating contextualized policies to ensure accessible health services for PWDs when needed. Findings point out ways in which understanding the barriers would help to identify the gaps in the resource system, and to mobilize required resources in the relevant healthcare departments.

In this chapter, we examine how the media in India constructed the lives, needs, and desires of disabled children in India during the tumultuous pandemic.

Through critical discourse analysis, we address how children's bodies and needs have been explicitly discursively constructed as “excessive,” while implicitly drawing upon neoliberal, ableist logics of loss and productivity.

We foreground how the framing of COVID-19 as a disaster in the Indian context obscures state neglect, suggesting that inequality has been the result of the pandemic rather than the limits of state care under neoliberal ableism. Despite the recognition of gaps in the care received by disabled children, neoliberal, entrepreneurial solutions have emerged as a new, widely touted form of care during the pandemic.

Through our analysis, we highlight how disabled children have been neglected by the state and constructed as burdensome and vulnerable. We argue that this occurs when disabled children's bodyminds do not conform to an ideal of the self-reliant, independent citizen under the logics of neoliberal ableism. Our work demonstrates how children with disabilities are discursively rendered absent from conceptualizations of normate citizenship, unless seen as contributing to current or future aspirations for state productivity and growth.

This chapter explores the experiences of people with complex conditions before and during the COVID-19 pandemic, their fears for imagined futures when the pandemic first appeared, their reflections on their experiences and present status, as well as plans for a post-pandemic future.

This research is based on semi-structured interviews conducted by phone, Zoom, or in-person with six participants, each interviewed twice – before and during the pandemic – who either have complex medical conditions or are mothers of a child with complex medical conditions, in the United States. Half the interviews were conducted before the pandemic and the other half during the pandemic.

The data illuminate the understanding of our participants of the COVID-19 pandemic as a disability issue, which should be analyzed with the focus of disability as an intersectional social category and that disabled people felt at higher risk due to ableism in health policies and getting their health needs met. The results demonstrated the tremendous impact of the pandemic on the lives of our participants with complex medical conditions, whether in their work, care, physical and mental health, and social relationships.

This study points to the importance of policymakers incorporating strategies to reduce ableism in health care provision, rationing, and other forms of decision-making. Services need to be designed keeping in mind the challenges of disabled people and their need for care. In addition, adequate education, and employment opportunities for disabled people must be ensured, while continuing to expand access options to disabled people that were available throughout the lockdown.

In this chapter, we examine how the schooling experiences of disabled children have changed during COVID-19, how families' engagement, advocacy and support of their children have shifted during the pandemic, and how race, class, and other axes of inequality shape these processes.

We used a semi-structured interview protocol with families of disabled children, asking them about their experiences with their children's schools before and during the pandemic. We analyzed the interview data using “flexible coding” and the constant comparative method.

COVID-19 has had wide-reaching effects on disabled children's schooling experiences, yet these effects varied, particularly at the intersections of disability with race, class, linguistic status, and gender. Remote learning and other pandemic-related changes to schools exacerbated extant inequalities in children's educational experiences, as well as in families' ability to effectively advocate for their children in school.

This research provides important information about how the pandemic has exacerbated inequality at the intersection of disability, race, and other axes of inequality. Moreover, it provides a lens to examine ableism and other systems of oppression in schools. The findings have crucial policy implications, pointing to the necessity of equitably allocated, high quality, inclusive educational services for disabled students, as well as to the need for special education policy that does not rely on individual family advocacy to allocate appropriate services.

COVID-19 has affected families across the globe with far-reaching consequences, particularly in regard to children's education. The pandemic has exacerbated existing inequalities for families of students with disabilities in particular. This chapter explores families' perspectives on how COVID-19 affected partnerships between families of students with disabilities and their schools in Ontario, Canada.

We interviewed 18 parents of students with disabilities in K-12 Ontario schools. Using a reflexive thematic analysis approach, we analyzed interviews to develop themes inductively.

Participants shared varied experiences of partnerships with their schools both before and during the pandemic. However, all participants described additional challenges as a result of COVID-19. Frequent, open, and personalized communication was emphasized as essential for effective partnerships; however, this was often lacking. Participants shared various ways they were involved in schools, including advocating for their child, and needing to balance multiple roles during COVID-19. Overwhelmingly, participants expressed an inadequacy of support during the pandemic related to online learning and a lack of human resources (e.g., Educational Assistants, therapists), negatively affecting partnerships. However, they also described positive experiences of family-school partnerships, as well as hope for effective future partnerships.

This research gives voice to families of students with disabilities to deepen our understanding of barriers and facilitators to positive family-school partnerships. Findings help to direct appropriate policies and practices that can improve partnerships during COVID-19 and beyond, and ultimately enhance education and quality of life for students with disabilities and their families.

Stay-at-home and lock-down orders issued by the Ontario government at the beginning of the COVID-19 pandemic led to the closure of many community-based programs for people labelled/with intellectual disabilities. L'Arche Toronto Sol Express, an interdisciplinary arts program located in Toronto, is one example of a program that rapidly changed its program delivery to an online format so that participants could remain engaged and collaborative projects could continue. Similarly, participants had to adapt to new programs with virtual formats, and to accessing programs from their own homes as opposed to gathering with others in the community.

To reflect on these changes, Sol Express members and creative facilitators together conducted a participatory research project which considered the impact of the online format on individual participants and the group as a whole. Following the principles of emancipatory and participatory research, a research team was established and focus groups were held to explore people's experiences.

Our findings suggest that while there were many difficult aspects to the pandemic, people also experienced situations of learning and growth. However, our project also points to issues of inequity in the pandemic's effects, such as the inability for technology to incorporate diverse communication methods, and concerns regarding members of the extended community who remain disengaged or ‘lost’ due to a lack of technological and personal support.

Although our research focused on an arts group for people labelled/with intellectual disabilities, our findings can be applied to the broader community, especially regarding the benefits of in-person gathering and what is lost when programs are held exclusively online.

We examine the impact of the COVID-19 pandemic on the functioning of university students with disabilities using assistant support services in Poland. The study aims to (1) reveal the role existing university-based assistant services play in students' lives and (2) examine the impact of the pandemic on assistant services by students with disabilities.

We gathered and analyzed 25 interviews with students with disabilities from across Poland, from public and nonpublic higher education institutions.

The assistant support service at universities introduced in Poland proved to be fragmentary and limited only to the educational process, which resulted in the exclusion of people with complex disabilities and those requiring support in self-care activities. The pandemic has exacerbated previously observed dimensions of segregation and inequalities leading to disproportionate isolation of students with disabilities. It also highlighted the limited understanding of personal assistantship functioning in the academic context and the need for urgent development of universal access to assistance services across Poland. At the same time the forced move to distant, internet-based learning, at least for some students, gave them a sense of self-reliance and independence.

This research adds to the understanding of the consequences of the COVID-19 pandemic for students with disabilities in the case of Poland. It also calls for a reexamination of what personal assistance should mean in the context of higher education and beyond.

In this chapter, we explore the role of disability-based employee resource groups (ERG) in implementing large organizations' disability inclusion strategies and how pandemic responses shaped the workplace treatment and inclusion of disabled employees.

We conducted semi-structured interviews with disability-based ERG members and diversity, equity, and inclusion (DEI) professionals in large corporate settings. Then, we analyzed how pandemic-induced changes in the workplace impacted disability inclusion efforts and experiences of disabled employees.

Results from our study revealed that workplace disability inclusion responsibilities shifted to disability-based ERGs during the onset of the pandemic. Participants detailed how organizational disability inclusion practices and policies expanded through increased awareness among some employee bases and were de-prioritized to the point of erasure in other situations. Within the context of the pandemic, members of disability-based ERGs played an integral part in both enhancing visibility of disability and responding to instances of ableism in their respective organizations.

Findings provide context as to how shifting organizational contexts, such as pandemic related workplace policies, becomes disabling, and in turn illustrate the fluid nature of disability. By framing disability as an evolving (fluid) identity category and prioritizing the awareness of disabled perspectives, organizations can better support disabled employees in their future, overarching DEI strategies and approaches to workplace inclusion post-pandemic.