The diversity of our interviewees yielded stories related to a wide variety of issues. Some of the interviews gathered spotlight existing social inequities experienced by people with disabilities in education, employment, housing, public life, and healthcare. Others simply show the changes in our collective lives through the lens of individuals living with disability. Below is a summary of selected interview themes.

Education and Disability Services

  • how Deaf students cope with in-person masking requirements when they need to read lips
  • how Universities are dealing with the accessibility needs of students with learning disabilities during remote instruction
  • for K-12 students, the loss of in-person services such as occupational therapy, special education, speech and language therapies
  • concern about the developmental and emotional aftereffects of loss of services and isolation, specifically related to language development in a non-verbal individual
  • Chinese immigrant mothers navigating language barriers while fighting for educational accommodations for autistic children in the public schools

Employment

  • the loss of volunteer opportunities and long-term employment
  • the loss of and ambivalence toward sheltered workshops (a term describing some “day programs” for people with developmental disabilities that are legally allowed to pay below minimum wage, often for “piece work,” or getting paid by the piece)
  • mothers of disabled children leaving the workforce or changing jobs due to loss of services and virtual school

Housing

  • COVID outbreaks at a homeless shelter and not being able to stay with family due to risk of infection
  • the stress of living in “lock down” with family or apart from family for long periods of time
  • delaying the search for independent housing due to COVID

Public Life

  • the boon in arts access for the disability community and what will happen to it after our return to in person events
  • voting in a Presidential election for the first time, by mail
  • the loss of everyday activities such as eating out, going to the mall, going on trips as part of a day program, going to events in Philadelphia and New York
  • The way the stay-at-home order impacted the visibility of the death of George Floyd
  • organizing a march in Swarthmore for Juneteenth 2020
  • not being allowed to go to the grocery store or ride the bus due to COVID restrictions at disability support agencies

Health and Healthcare

  • fears of ending up in the hospital with COVID and not being allowed to have family members there who serve as translators for individuals with disabilities related to speech
  • fear of being denied ventilators on the basis of disability
  • trips to the Emergency Room early in the pandemic when doctors and nurses wore hazmat suits

Death, Illness, and COVID

  • the death of friends and family and not being allow to host or attend funeral services
  • contracting COVID or having a family member who contracted COVID and isolating at home
  • fear of contracting COVID due to preexisting conditions
  • the treatment of new or preexisting conditions during COVID restrictions

Family

  • reflections on unexpected gains such as time with family and time with beloved pets
  • missing birthday and holiday celebrations
  • caregiver fatigue
  • parents becoming their disabled child’s teacher during virtual schooling
  • balancing caregiving and working from home