In 2020, as COVID-19 raged, people had to work from home and were asked to socially isolate. Many adults, some of whom had never had more than a three-day weekend at home or a week-long vacation off of work, were now stuck at home and uncertain what to do with themselves. Over and over I saw articles posted on social media about how to “survive” the isolation. People struggled, became depressed, got antsy, felt isolated, and alone.
Many of us in the disability and chronic illness communities know these feelings all too well. We are used to the isolation that comes with days at home by ourselves, and we are familiar with the struggles of meeting our basic needs, such as getting groceries, while being unable to go out into the world. In many ways, we were more prepared to handle the lockdowns and isolation of COVID than non-disabled people.
A World Opening to Us
As the lockdowns moved from just a few weeks to months, folks got creative. More and more stores began offering delivery or drive-up options. Medical facilities created ways for doctors to meet with patients virtually. Employers found ways for people to work from home. Schools moved their classes online. Music shows, theater, and other forms of entertainment were offered via Zoom or other virtual platforms so people could participate from home.
Suddenly, as a disabled person, my world opened up with new possibilities. On many levels this was frustrating and enraging, as the disability community has been advocating for these things for years. We were told these things weren’t possible or we were just ignored, and our access needs were seen as a burden or too much extra work. Yet, despite the frustration felt, all these changes that came about due to COVID-19 were also a blessing. Now our access needs were being met in a myriad of new ways.
For the first time, I could attend a show online from bed and still have the experience of live music or entertainment. I could get groceries delivered from a variety of places without exorbitant extra fees. I didn’t have to cancel my medical appointments on days I felt too ill to drive to them; I could do telehealth. In many ways, while the world was closing up for many other people, the world for myself and many other disabled people was opening.
Returning to “Normal”
Now, over two years since the start of COVID, things are starting to go back to the ways they were previously. Individuals are returning to work in offices, bands are performing in performance halls packed with hundreds of people, and people are returning to the regular activities of their daily lives such as grocery shopping or meeting up with friends for coffee. I see posts on social media of people excited for things to return to “normal” and for their lives to go back to being unhindered.
But as I watch this I fear for myself and the other members of the disabled and chronically ill communities. The “normal” world that so many others want to return to was a world that was far less accessible to us in many ways.
I’ve already seen accessibility diminishing in some very real ways. I am a burlesque performer, and during the height of lockdown and restrictions, many producers found ways to create online performance opportunities. This was wonderful, both as a disabled performer and as a patron of the arts. I could record my performances when my body was having a good moment and not worry about potentially having to cancel a performance if I wasn’t feeling well. I also could attend shows from bed, or from my couch, cuddled up with my heating pad. I felt a closeness with my performance community. Now less and less shows are offering online performance opportunities, or even online viewing options. Now that able-bodied individuals are going back to life as “normal,” it seems to no longer even be on the mind of producers that there may be those who are still at home and wanting to be able to enjoy entertainment.
My teen lives with mental health issues including some severe anxiety. For them, and many other teens at their small alternative high school, physically getting to school each day can be a challenge. When all their classes moved online they thrived, getting better grades than they have ever had, and excelling at school. As their school goes back to in-person classes, they and many of their peers are struggling again.
COVID proved that the accommodations the disability community had been told were “too hard” to create were actually quite feasible. Yet, as the world returns to “normal” I’m seeing these accommodations slowly slip away, and it saddens and frustrates me. While many non-disabled people are emerging from their isolation, many of us who are disabled or chronically ill are feeling our worlds shrinking again, returning to places of more isolation.
A Hope, A Request
I have hope, as society has proven that they can accommodate us in the ways we have been asking for. We’ve now seen in action a myriad of ways that disabled and chronically ill people can have their access needs met. What we need is for those things to continue, not just be abandoned because they’re no longer needed by everyone.
And so I ask any non-disabled people who may be reading this — remember us.
Remember those articles that you posted about surviving isolation, and know that for many of us, that isolation is to some degree or another our daily reality. Instead of just meeting up for coffee with your friends who are well enough to join you, grab your coffee and head to the house of your chronically ill friend, or connect with them via Zoom to talk.
Remember how nice it was to be able to attend concerts, shows, and classes online when you were stuck at home, and help us advocate for our continued need for online options. Let your boss know the importance of continuing to allow work-from-home options. Email your local grocery store to let them know how much you appreciate the drive-up options and how you hope they will continue.
As restrictions lift, I hope the world doesn’t return to “normal” in the ways it was before. I hope we all can grow from this experience, and learn about the various ways we can make the world more accessible for a variety of people. Instead of returning to the old normal, let’s create a new normal, a future that includes access and accommodations, and multiple ways of experiencing and moving through the world.
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