Waking up with cerebral palsy is as unpredictable as it is unremarkable.
Add in a pandemic, a loss of income and national reports that equate to government ministers with megaphones saying, “Disabled people, lock yourselves away,” and things get a tad more complicated.
Each morning I do a body inventory.
I call my knees my weather veins. They tell me with a dull ache whether it’s rained the night before, a sharp pain for snow, a slight reprieve if the temperature didn’t shift much.
I am a disabled artist and I work from home. My second bedroom/office is already used to my presence.
On paper, not much has changed with the onset of COVID-19. But two weeks ago, my coffee breaks were for watching YouTube, not checking in with disabled friends currently confronting mortality.
While I often don’t go outside for long stretches, it’s the option being taken away that stings. As disabled people, many of us are used to radically unpredictable circumstances leaving us without the surety many hold so dear.
It’s very hard to watch the adaptations many of us beg for — remote working, live streamed art, food delivery — become ubiquitous and unchallenged as soon as abled people find themselves needing them.
Seeing reports of the disabled and the elderly as the expendable ones is a harsh reminder that my body is seen by most as a liability, no matter how much I want to prove otherwise.
Once my daily body check is over I walk (or wheel) to the kitchen to get my dogs food and water while my wife keeps snoozing.
Delivery times increasing
I basically live in the parking lot of a grocery store, but I need the energy savings that come with delivery, so I check to see what we’ll eat over the next two weeks. Delivery times are getting longer and longer.
While the adapted shopping hours presented by grocery chains have been well publicized, the grocery delivery service I use has been overrun, to the point where the company sent out an email pleading with customers “to leave our online ordering service to those who aren’t able to get to the store, including seniors, people with disabilities, and those who are ill.”
Disabled people are at risk because we’re not just losing access to the basic necessities, but also the sneaky workarounds to make life just that little bit easier.
We’re living in a world where the Center for Disease Control’s guidelines for self-isolation might as well say, “disabled people, stay home,” because they list almost every condition as a reason to stay inside.
Feeling of self-isolation is familiar
While I pour myself a glass of milk, I check Twitter.
This morning, it’s all about the aforementioned anger, the fury that comes with the acknowledgement you’ve been craving being snatched out of your hands because an abled person demands they deserve the benefits you need to live.
I retweet one person speaking about humility, and how shaming people who haven’t felt the self-isolation that so many of us disabled folk feel every day won’t do us any good, then go to my desk.
I’m a workaholic. I always have been. But these days I only get about four usable hours.
Something about seeing medical services turning to dust has rendered my brain incapable of managing it all.
To make what I can of the usable hours — food must go on the table and bills must be paid until our government advocates for a rent freeze — I open up my task management app.
My program of choice, Trello, has a card listing system. I have three headings: must do, could do, would love to do. With the general peril chipping away at what little calm I have left, I choose three tasks for each section.
I created this system a year or so ago having watched one too many productivity videos and wanting to limit my time at my desk. Now, I do it to pretend that I’m keeping the cognitive wheels turning.
I clear them off slowly: edit the campus newspaper, take part in a couple of meetings where the virus is a looming topic around every little corner, finish more of the film editing I’m doing. My brain is mush before I hit the the four-hour mark.
I start texting friends across the country. Having played at a high level in wheelchair basketball and wheelchair rugby, my disabled friend group stretches the world over. With some, I commiserate. With some I talk about baking bread. With a few I just have a good old-fashioned cry.
At the end of the day, I embrace my English degree roots and reach for something to read. If there were no pandemic to worry about, my choice right now would probably be a fantasy book. Partrick Rothfuss’ Name of the Wind currently sits on my nightstand. Today, I need a reminder of the beauty of being disabled.
I reach for a piece by AH Reaume and take solace as she writes about disabled love, the kind of love that has got me through some version of this horror and will have to do so again.
The radical expression of disabled love that writers like Rheaume describe is exactly what our society needs to take more inspiration from. Who better to take notes from on the intricacies of food prep on limited energy — whether that be from cerebral palsy or the impending sense of doom that comes with weeks inside your house — than a disabled person who has lived it for 20 years?
“It’s a love that accepts you completely. It’s the love we give each other because we wish others had given it to us. Disabled love is so strong because it recognizes the ways in which other love often falls short.”
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