Everyone has stories about how their life has been altered due to COVID-19 and related containment measures, but it is also clear that the direst effects of dealing with the pandemic have not been distributed equally. Some argue that the disability community has been largely overlooked in the design of COVID-19 precautions and has been left with few resources to mitigate negative impacts. Researchers across the country are working with community partners to better understand the impacts of the pandemic on people with disabilities.
At the University of Alberta, Professor Michelle Maroto, in collaboration with Professor David Pettinicchio at the University of Toronto, is studying the social and economic effects of COVID-19 among people with disabilities, chronic illnesses, and other underlying health conditions.
Preliminary findings from a nationwide survey demonstrate that people with disabilities and chronic health conditions are not only very worried about getting COVID-19, they also feel excluded from the work of policy-makers and are concerned about their long-term economic situation.
- 40% of respondents have added to their credit card debt since the pandemic began
- More than a third of respondents reported struggling the pay rent, mortgage, and utility bills as a result of COVID-19
- Over half of respondents said they are struggling to pay for groceries
Dr. Karen Yoshida, an Professor in the Department of Physical Therapy and the Graduate Department of Rehabilitation Science at the University of Toronto, is working with graduate students to better understand the day-to-day experience of living with a disability during COVID-19 through first-person accounts from community members.
Community Partner Wendy Porch, Executive Director of the Centre for Independent Living in Toronto, has witnessed numerous daily challenges facing people with disabilities during COVID-19. Some of the challenges she expects to arise during conversations with research respondents include an inability to isolate due to the need for attendant services, the ongoing challenges of living at the poverty line – exacerbated by ineligibility for new supports such as CERB – and added stigmatization due to an inability to take part in precautions such as mask-wearing.
Dr. Susan Mahipaul, a Lecturer in the Disability Studies Program at King's University College and partner in the project, explains that there is a “narrative gap” when it comes to understanding the experiences of the disability community. “As a researcher, clinician, and disabled woman, I understand that the voices and stories of disabled people have historically been silenced in research and medicalized. Foregrounding disabled people’s voices (e.g., nothing about us without us) not only makes visible their lived experiences, but also disrupts stereotypes and normative assumptions on disability, and fosters social change,” says Mahipaul.
Professor Yoshida hopes that this research will not only support more inclusive policy and government directives when dealing with future public health crises, but also that the experience will be formative for the 2nd year MSc physical therapy students who are working on the project and training for careers in physical therapy. Explaining the value of undertaking this project as part of her coursework, student Alexandra Wojciechewicz adds, “These are people whose voices have traditionally been underrepresented in our society and this has only been amplified during the pandemic at a time when understanding their experiences and needs is more crucial than ever.”
Professor Jess Whitley at the University of Ottawa, alongside co-investigators across the country, is looking into the experiences of families as they support children and youth with special education needs during COVID-19. Provincial reporting indicates that between 10 and 20 per cent of enrolled students receive “special education services.” Many of these families feel their child’s needs were not met during school closures as collaborative staff supports were unavailable. Children reacted in wide-ranging ways to at-home and online learning; Whitley hopes that this research will help to develop meaningful support networks for disabled students and their families no matter how schooling takes place throughout 2021.