Social and Health Experiences of Disabled People with Complex Medical Conditions During the COVID-19 Pandemic
Disability in the Time of Pandemic
ISBN: 978-1-80262-140-2, eISBN: 978-1-80262-139-6
Publication date: 26 January 2023
Abstract
Purpose
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.
Methods/Approach
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.
Findings
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.
Implication/Value
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.
Keywords
Acknowledgements
Acknowledgments
We would like to acknowledge research assistants who helped with interviews: Julie Maury and Alexandra Wagner and transcribed the recordings: Rebecca DePasquale, Daryn Osman, and Shaela Khan. We thank Nancy Speller and Joan Headley for invaluable assistance framing the research project and recruiting participants for “Aging Out of Children's Hospitals.” We enact this project to honor the memory of Nick Dupree.
Citation
Lorandi, J.M. and Block, P. (2023), "Social and Health Experiences of Disabled People with Complex Medical Conditions During the COVID-19 Pandemic", Carey, A.C., Green, S.E. and Mauldin, L. (Ed.) Disability in the Time of Pandemic (Research in Social Science and Disability, Vol. 13), Emerald Publishing Limited, Leeds, pp. 113-131. https://doi.org/10.1108/S1479-354720230000013007
Publisher
:Emerald Publishing Limited
Copyright © 2023 Joana Milan Lorandi and Pamela Block. Published under exclusive licence by Emerald Publishing Limited