Why I Lie About Being Disabled

It started a few days after my last day of work, back in December of 2017. My husband, Eric, and I were at our apartment building’s holiday party, sitting on retro furniture in the glass-walled lobby and nibbling finger food. Another couple approached us.

“What do you do?” the woman asked me.

I hesitated. I looked at Eric.

I thought, I’m disabled.

I said, “I’m between jobs.”

“Oh, funemployment!” she said. “I’ve done that. A break can be really nice.”

I smiled and tried to pretend that, yes, I was having a lovely staycation while scrolling through indeed.com and attending networking happy hours, or whatever people did who lost their jobs but had hope of finding another one. Hope I didn’t have.

It had been more than two years since I’d been biking home from work through downtown Minneapolis and someone had opened a car door into the bike line, sending me flying like Superman (but without his superpowers) 10 feet through the air to land helmet-first on the asphalt. It had caused a concussion that never healed, leading to chronic migraines, exhaustion, and difficulty concentrating.

After that, I worked part-time at my full-time job administering government grants to build volunteer programs and fight poverty. I could manage only 20 hours a week, and even that was possible only because of long stretches I’d taken off work entirely — once for five weeks, and then later, through the Family Medical Leave Act, for three months.

Both times I’d hoped I would return to work healed. But I didn’t. I squinted at the computer screen through intense head and eye pain, having trouble concentrating on the grant reports and pages of government regulations I was required to make sense of. After four hours of work, I’d go home and take a three-hour nap.

Continuing to work in the career I loved wasn’t sustainable.

Eventually, doctors labeled me permanently disabled, and my employer, unable to let me work part-time indefinitely, “medically terminated” me.

So the most honest thing to say when asked what I did for a living wasn’t that I was in between jobs. It was, “I’m disabled.”

But instead, I started saying, “I’m a freelance grant writer.”

It is true, sort of. I take occasional grant writing gigs, limiting myself to 10 hours a week. But the level of intense thought this work requires makes even that minimal schedule too much. It exacerbates my headaches. It makes me collapse in bed all afternoon. It leads me to apologize to Eric over and over as he works an eight-hour day, then cooks meals and mows the lawn and weeds the flower beds at our new house, and I stay inside, watching “Queer Eye” or listening to audiobooks while I knit.

So I’ll work 10 hours a week for a month or two, then take two or three months off before I look for another project. In those months I get to use my energy on other things, like cooking, or remodeling the bathroom, or sitting quietly on the couch.

Given all that, the fact that I’m disabled seems like a truer statement of my work (or lack thereof) than is my claim to be a grant writer. But I still don’t say it. Because I’m scared of people’s reactions when they hear I’m disabled from a concussion, which is a type of brain injury.

Shortly after my doctors told me I’d exhausted all treatments and my condition was likely permanent, an old friend texted to check in. When I told him I was grappling with the possibility I might never recover, he responded: “Well… your base intelligence is twice that of a normal person, so it sounds to me that what you are processing is the fact that you may no longer be a superhero.”

I knew he meant well, but his text was disheartening. He assumed that having a concussion meant I was less intelligent than before. And I worried: Is that what everyone else thinks, too?

It turns out there’s reason to think so. If you start looking for brain injury references in American culture, you’ll notice negative portrayals everywhere. In the last week alone, I’ve encountered two references to concussions that cast us survivors in a bad light. In an episode of the Netflix sitcom “BlackAF,” a college football player is criticized as “probably too concussed to even know what his major is.” And in the romantic comedy “Long Shot,” a politician asks her staff to rewrite a speech because it makes her “sound like I have a head injury.”

I wanted to scream at the television. I wanted to tell these actors and writers and producers that having a head injury doesn’t necessarily take away a person’s intelligence.

And even if it does, so what? Why is being less intelligent synonymous with being undesirable?

Two years ago, I met someone else whose concussion had never healed, forcing him to drop out of college. He was living and volunteering full-time at a meditation center and teaching meditation in prisons.

“I’ve lost 30% of my intelligence,” he told me, “but I don’t care. The concussion was the best thing that ever happened to me, because it led me here.”

I don’t know if I’ve lost intelligence because of my concussion. What I do know is there’s a lot more to a person’s character and worth than how well they perform on a test, or how smart they sound when giving a speech, or what job they hold. Things like compassion, kindness, and generosity of spirit, to name a few.

About nine months ago — in pre-pandemic times — I was at a gathering of maybe a dozen strangers, and one man mentioned he’d just left his job because of a disability. I looked at him, a seemingly fit guy in his 30s, someone I’d sooner have guessed was a personal trainer than a person with a disability. (And, for all I know, he may have been both.)

He mentioned his disability and kept on talking, as casually as I might say, “I ate cereal for breakfast, and let me tell you about this great book I’m reading.” Nobody else registered a reaction, either, although admittedly I may have missed it, because his words had sent me burrowing into a private place of shock and fear, as though the only other spy in the room had just blown his cover and maybe, by extension, mine. But mostly I marveled he had the confidence to say it at all.

I could discuss my disability that casually, I thought. That’s a choice I could make.

Now, hunkered down at home as COVID-19 rages on, I don’t have many opportunities to meet new people and be challenged by that inevitable question, “What do you do?” Instead, I’m remembering that guy with the confidence to own his invisible disability. And I’m hoping that whenever it’s safe to attend a dinner party again, I’ll have the courage to simply say it: I’m disabled.

Kara Garbe Balcerzak is a writer living in the Shenandoah Valley of Virginia. For more from her, visit her Facebook page.

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