Is It Really Unreasonable for the Disabled to Ask for Workplace Dignity?

I’ll confess an omission. I waited two months before telling the publishing company I worked for that I’d been struck deaf.

The thought of losing my journalism career paralyzed me. I assumed my disability disqualified me from my dream career. How can a deaf person conduct interviews? I had only unsustainable ideas. My fantasy was I’d wake up one day magically hearing again, and they’d never learn what happened. Eventually, my editor asked me to write about a marching band — hearing was necessary. Cornered, I fessed up.

The company accommodated by letting me edit drafts. Mingling gratitude and desperation, I obsessed over keeping that opportunity. Later, dying in the ICU from sepsis, I pored over drafts for hours, barely able to keep my eyelids (and airways) open. No one asked this of me. But I couldn’t bear the idea of them thinking I was too weak to work.

This wasn’t unfamiliar territory. I’d sacrificed liberally for school. I’d missed doctor appointments, skipped numerous treatments to meet deadlines, worked 18-hour days when I should’ve been hospitalized, and regularly left classes to vomit in the restroom and then return like nothing had happened.

I mechanically performed the workaholic culture instilled in me: You are your work. If you can’t work, you ain’t much of anything outside of a burden. I would rather have died for my work than live in that shame. Pair this myth with the financial instability of chronic disease, and you have a heckuva pickle.

Sorry for the scratch

If your father is a dad joke connoisseur, you probably know of Monty Python’s Black Knight who, arms and legs lopped off by a blade, cried out, “‘Tis but a scratch!” and “It’s just a flesh wound!” A recent New Yorker cartoon depicts this scene with a new script: “‘Tis but a scratch—in America, I’d still have to go in for work today.”

Just the other day, an American colleague who has spinal muscular atrophy said he could join a meeting while in the recovery room after a procedure. “Meanwhile, Europeans will take off two weeks to ski,” he dryly joked. Two years into a pandemic laying bare horrific flaws in the normalization of showing up for work while sick … and we still haven’t changed much, huh?

I oversee about 100 columnists for the publisher of this site, all patients or caregivers from across the world. Each day, I receive apology emails from American writers for missing deadlines, and for the most absurd reasons. No, the excuses aren’t absurd, the apologies are, because this is what I read:

• “I’m sorry I can’t hit my deadline. I’m in the ICU.”
• “My column will be late because I’ve been nauseous all day, but I promise I’m trying to write between all that.”
• “I’m only now getting home from the ER! I’ll try and write that draft tonight! So sorry!”

Broken-record Brad has gone bonkers, and he tires of his script: “Please don’t apologize for having a disease. Please just rest and don’t worry about work.”

Don’t they realize I have a disease, too? That I get it? Don’t they know our company accommodates because we serve people like them?

But my boss might remind me of all the times I apologized for “slacking” when sick, or editors might joke that I always swear I’ll work late that night to make up for time lost during doctor appointments.

Casualties of competition

We worry. Why? Because competitive culture has steamrolled us. Because people imply we’ll rarely measure up to, and never get ahead of, the able-bodied and the healthy. Because society pretends overworking is synonymous with successful because, hey, haven’t you heard? This society is go-go-go. If you can’t keep up, you’re left behind. People brag about being exhausted because it’s a good look. (A deadly look, if you have a disease.)

The name of the game is “survival of the fittest.” It’s ruthless. Sure, people like me are sick. Maybe American society is, too.

“Hey,” says society, “we don’t make the rules — we just live by them. Oh, but of course, there are exceptions if you have a disease. Of course.”

Uh-huh.

What would it look like to make compassion the rule, instead of competition? What would it look like to love mercy? I won’t run through the obvious solutions — protections, considerations, benefits — demanded of supervisors, influencers, and legislators. Give us dignity, or watch us die for our jobs, die for the workplaces who’d mourn our absence for but a handful of hours.

Let’s paint a vision. Dignity looks like fewer apologies for drawing the short straw in health. Dignity looks like people not fearing they’ll be fired for getting sick. Dignity looks like people preserving mental health because they haven’t blown all available paid leave on exhausting hospital appointments. Dignity looks like us not praising how “beautiful” it is for a bunch of teachers to sacrifice their vacation days to cover a co-worker with cancer.

I love fantasy.

Back to work, now. You’ve wasted enough time.

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.