One of my favorite recent TikTok trends spoke to our collective need to get back out there. “I’m going to the streets,” it goes, “The streets are calling my name. This. Su-mmer.” As I sang along all su-mmer, I had to ask myself, Are the streets ready for me and my knee brace? And my crutches? And the extra strength CBD balm I now religiously rub into my muscles? And the Theragun massager I purchased during one of my online shopping binges, but actually desperately need to maintain adequate blood circulation through my upper back and thighs? I’m not the person I was pre-pandemic and when I look at myself among my friends, I’m not alone.
Numbers vary, but it’s safe to say that a large chunk of Americans are dealing with the aftereffects of COVID. And for those who aren’t, most of us are coping with the side effects of long-haul lockdown: chronic pain from our work-from-home desks, chronic insomnia from two years of uncertainty, along with an increase in diagnosed cases of anxiety and depression. Then there are the people like me, people who suffered from the lack of non-COVID medical care during lockdown and are still dealing with the fallout of a year without adequate treatment. There are all sorts of stories like these. We’re a weird Venn diagram of circumstances that both predate and intersect the pandemic. What we hold in common is that many of us are just now figuring out how to talk about our limitations. And, in the dialogue, the word we’re trying on to describe our new reality is “disabled.”
Monumental crises have this way of changing the way we think about language. The pandemic has been eye-opening for me in how broadly our culture ignores chronic, functional illness. In the very early days of COVID-19, when most folks were still hitting the streets to go to gatherings and parties, using the excuse that the disease “only affected old people,” I looked at the list of high-risk categories. It included people with asthma, heart conditions, nervous, circulatory, and endocrine disorders — all of which can be congenital. I thought to myself, Nah, fools, this affects everybody. And by “everybody” I meant those of us at the intersection of “low risk” for age and “high risk” in multiple categories of invisible, chronic, illness.
I’ve dealt with Ehlers-Danlos syndrome, a neuromuscular autoimmune disease, since I was about 11, but it’s only since the pandemic that I’ve accepted the idea of myself as disabled as opposed to “sick,” “ill,” or “feeling bad.” In periods that I’ve been at my worst, I’ve always excused myself from situations by saying, “I don’t feel good,” to explain away muscle spasms that are too intense for me to get out of bed, or why my leg suddenly gives out on me. There are things my body can do very well and there are things I’m better off not. As one of my disabled girlfriends — the person who first introduced me to the concept of “invisible,” or less-visible disabilities — put it, “I’m not helpless; sometimes I’m just momentarily out of order. A soda machine is still full of great things even when it’s ‘Out of Order.’”
Without the language of disability at my disposal, my physical limitations were hard for me to explain at my old 9-to-5, where my bosses questioned why the “normal,” healthy, millennial person they hired would sometimes come to work limping and wrapped in shawls the size of blankets, or — on my baddest bad days — with the assistance of crutches or a cane. “You’re going to have to get rid of that. It looks bad,” one of my bosses once said in a performance review, referring to my cane. Aside from a sports injury, he couldn’t understand how it could be possible that I could be a picture of health and high heels the day I was hired and had morphed into a fairy tale witch in front of a gingerbread house less than a month later. Yes, this is ableist (and sexist), but, less than a generation ago — up until the pandemic, really, when more could work from home — this is what people with invisible disabilities were up against in the workplace.
It wasn’t until I switched careers, from advertising to working as a college professor and writer full-time, that I met people who taught me to put language to my need for accommodation. Surprisingly, those people were my students; young millennials and older Gen Zers who were bent on removing the limitations of “isms” from their lives, ageism and ableism chief among them. Watching them advocate for their pronouns to be respected, and for problematic statues to be torn down, in addition to the patience with which they insist on the learning accommodations they need for their education, fills me with pride. They are using their truths to combat prejudice. They are brave. They helped me see “disability” as a word for a heightened self-awareness, not the deficiency we treat it as.
In certain ways, young people were better equipped for a world in lockdown because they were more generous with themselves, and more open-minded, than I was taught to be as a millennial.
It takes a lot of patience and listening to yourself to balance work and life in a body that performs differently. Expressing your needs in a world that expects people to deny those urges in favor of what’s been deemed good for the majority exposes you to ridicule and prejudice. There’s a pervasive cultural fear that claiming a disability means being overtaken by human weakness, but disabled people drum up some pretty superhuman strength to get through daily tasks most people take for granted. And they live healthy lives, knowing they might have to be humble about the assistance they require in order to do this. It’s Gen Z who taught me this. I find it ironic that the same group of people we categorized as too young and healthy to worry about COVID at the beginning of the pandemic are now the ones leading the fight for rights of the infirmed. They are the ones requiring that we respect the definitions of disability acknowledged by the U.S. government, which includes not only differences in sense or mobility but also anxiety disorders, obsessive compulsive disorder, bipolar disorder, schizophrenia, and depression. And — as of July — long COVID, too.
At the beginning of the pandemic, when I said to myself that disability affects everybody, I was thinking about my students and how, in certain ways, young people were better equipped for a world in lockdown because they were more generous with themselves, and more open-minded, than I was taught to be as a millennial. What I admire about Gen Z is that they make their abilities work for them. In lockdown, probably more than any other time, most of us weren’t able to cover up the things we ignored about ourselves, or didn’t share with anyone, in order to appear “normal.” And, in this time, we’ve learned that accommodating our unique needs is easier to do on a broad scale than we ever were entitled to advocate for before. So, are the streets ready for us? I really do hope so. But don’t hesitate to break out those compression socks, asthma inhalers, and heart monitors at your local block parties. I’ll be right beside you, waving my crutch and my bad leg high in the air.