Pandemic Changes That Have (and Haven't) Helped the Disability Community

How the pandemic has leveled the playing field for those of us with chronic illness or disabilities — and how it hasn’t

February 2020. Time to write that email again: Dear teacher, I am Cameron’s mom. Would it be possible to have Cameron’s parent-teacher conference in the front office, as I use a wheelchair and getting to your classroom would be difficult for me. Thank you.

My son’s public middle school is ADA compliant. But there is a big gaping fissure between “ADA compliant” (i.e. there is an elevator that serves every floor in the building) and being truly accessible. The school is a hodgepodge of interconnecting buildings, all constructed at different times. To get to my son’s classroom, I would have to enter the building through its main entrance, wheel past a stairway entrance and along three hallways that form three sides of a square, the floors all at slightly different levels so ramps go up and down between them, and then take an elevator up two floors, and finally wheel all the back around that square, ending up at the top of the stairs I wheeled past just inside the entrance. Although I can do all of that, it would leave me exhausted and in pain. So instead we ask to meet the teachers in the front office. Invariably not all of them can make it. And those that can have to cut us short, as they have to get back to their own classroom for their next conference.

But this spring was different. Parent-teacher conferences were online, via a video-chat platform. My husband, my son and I all sat around our kitchen table and spoke with each of his teachers one after the other. We were able to have a full-length meeting with each of his teachers, none of them cut short and every teacher able to make it.

Then there are medical appointments. Pre-pandemic, I would have to schedule my appointments, then check with my husband if he could take some time out of work that day to bring me to the doctor’s office. If he couldn’t then I would have to schedule a ride from our local paratransit shared van service. The nature of the shared van service would mean that a 30-minute appointment could end up being a three-hour round trip. And if the appointment over-ran and I missed my scheduled return pick-up, I could be waiting an hour or more to be fit onto the schedule of a different van. My sons are now teenagers and can be left home alone, but when they were younger I would be doing all this with a toddler in tow, or frantically calling around friends to find someone to pick them up from school because I would not make it back in time.

But suddenly now I am able to have many of my appointments via telehealth, something my insurance wouldn’t cover before the pandemic. I can sit in my living room, open up my computer five minutes before my appointment time and speak with my doctor. And just like with the parent-teacher conferences, the appointments rarely run late or feel rushed. If I need any follow-up testing, the doctor can send the request to a lab near my home and I can get the bloodwork or imaging done at my convenience.

But for many of us living with chronic illness or disability, the societal changes due to the pandemic have come too late. One of the reasons I finally had to stop working and take medical retirement was because I could no longer manage a full day of work plus travel to and from my office. I would get home to my family completely exhausted. If remote working had been an option, I may have been able to remain in the workforce a lot longer.

And not all the changes are necessarily for the better. The feelings of isolation many are experiencing due to the pandemic echo the lived experience many of us in the chronic illness and disability community have dealt with every day of our lives. This is not something I would wish on my friends and family. Nor is the anxiety of putting our lives on the line any time we are out in public spaces.

I hope that when the pandemic is over and life is back to “normal” for the rest of the population, they will remember that for some of us, nothing actually changed.