Chapter 6: Social and Health Experiences of Disabled People with Complex Medical Conditions During the COVID-19 Pandemic

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.