There are a thousand surveys detailing the most minute aspects of how Americans feel and behave in response to the coronavirus pandemic. But, as usual, disability-specific information is hard to come by. So we sent out our own survey. So far, we’ve received 225 responses. It’s not enough for a scientific data set, but it’s enough to get a better feel for how the pandemic has been affecting our community. Five individual respondents report having COVID-19 themselves and 47 (21%) know a close friend, family member or caregiver who has been infected. In addition, an overwhelming majority (almost 70%) feel that the pandemic has had an increased impact on their lives because of their disability. Many people took the time to describe how the pandemic has altered all aspects of life — see selected responses below. We hope you find the results as interesting as we do.

“Had to finish freshman year of college online. My mom is now my primary caregiver. Unfortunately, I may not return to campus this fall due to increased exposure and have to continue courses online.”

“I am paralyzed from T6-7 and have Type 1 diabetes and multiple other underlying health conditions. I was sick from March March 3-10. I quarantined myself for one and a half months. I beat this virus in seven days. I live in a building with other people with illness — by March 6, we got notices that people had tested positive in the building, and multiple others were sick here. They tested two people with the worst symptoms, and both were hospitalized and returned home, but only one supposedly tested positive for COVID-19, when we all know everyone must have had it.”

“I use oxygen daily and knowing that COVID-19 is a respiratory disease makes me very anxious. I know if I get it, it will kill me.”

“COVID-19 has completely taken over my small town. I’ve never felt so lonely and trapped in my life. It’s really brought even more stress on to my already stressed life. Can’t wait for this virus to go away!”

Tyler Stosich, a power chair user, came up with an effective way to route his sip-and-puff control tubing through an N95 mask. Stosich has been self-isolating with his live-in girlfriend as much as possible but says he uses the mask setup “whenever I have to go to the grocery store or any public place.” He says he’ll be getting a new shipment of N95 masks soon, and he’s happy to convert and ship to anyone who needs one (email us at smcbride@unitedspinal.org).

“I contracted COVID-19 and was hospitalized. I participated in a Remdesivir study and had good results. I continued to improve, and I am doing well.”

“Curbside delivery of food from restaurants has been wonderful with not needing to get my chair out of the car to get food.”

“Unable to go to the hospital for pressure sore issues. That has been very difficult. Also, my caregiver is no longer working, so my 60-year-old parents are doing everything.”

“I’ve lost my income for the rest of the year, as my employer has decided not to reopen this year.”

“I had family call me a murderer for going out. Drove two hours to eat inside a restaurant today. Felt great and no mask.”

“I enjoy solitude, but I miss seeing friends and family, socializing, human touch. I am an active volunteer, and I miss that involvement. Normally, I would be taking part in the ongoing protests, but I won’t put my health more at risk. A close friend died from COVID-19, and those of us who loved him can’t be together to support each other and celebrate his life.”

“Zoom has actually improved my connection with others in the disability community.”

“This COVID-19 situation was a whole new level of isolation. It was depressing to have more limits put into my life than ‘just’ my quadriplegia.”

“At first I was irritated and couldn’t wait to get back to life. But now I’ve accepted it, and this is a new way of life — like when we were injured, we had to adjust how we did things.”

Comparing Our Experience To That Of The General Population

Given the increased risk factors for transmission and development of severe symptoms that the SCI/D community faces, it’s not surprising that our survey respondents tend to be more careful with their behaviors than the general public. In a May Gallup survey, only 36% of Americans say they wear a mask whenever they’re in public and a full 31% say they never wear one. Among our respondents, 50% wear a mask whenever in public, and only 5% never wear one. When it comes to travel, 34% of our respondents say they’ll be willing to resume travel only when a vaccine is available, whereas one recent survey showed that only 16% of the general public plans to wait for a vaccine or cure before resuming travel. One similarity between the SCI/D community and the general public is that we all think it will be a while before life returns to something resembling normal. A Marist poll found that two-thirds of Americans say a return to normal will take six months or more. Our survey found that 70% thought a return to normal would happen either in 2021 or when a vaccine is available. Maybe we are all in this together, after all.

‘Other’ Impacts*:

• Not able to go to the gym to exercise.
• Unable to have routine doctor appointments/medical procedures due to the shutdown.
• Depression.
• Inability to protest with everyone.
• Poor access to quality foods and disinfecting products.
• Unable to go to church.
• Homeschooling my son.