‘When a Co-Worker Said I Shouldn’t Miss Work Because I ’Don’t Feel Good’ was originally published on The Mighty.
“We all don’t feel good sometimes, but we still have to go to work and pay the bills.”
I stood across the kitchen from the person who spoke these words, dumbfounded, as she patronizingly chided me for having missed several days in a row of work due to a flare-up of a chronic, debilitating health condition — a condition, I would like to add, for which I have ADA accommodations with my workplace already set.
I know I have a disability. My employer knows I have a disability. The person who uttered these words to me knows, somewhere in her mind, that I have a disability. But because I am not in a wheelchair, or because of her outlook on life, or because of a streak of unnecessary cruelty that I cannot fathom, she chose to ignore that I am disabled by this disease and shamed me for it anyway.
The vast majority of us with “invisible disabilities” — diseases of both the mind and body that are not readily apparent at first glance — have experienced this at least once. It has probably happened to you more than once. It probably happens to you all the time, especially if you need to utilize disability accommodations in school, work, and life in general. Because you don’t “look” disabled, because you may not “act” the way they believe a person with disabilities should behave, because you can do some things but not others, or can do some things sometimes but not all the time, your disability, in their eyes, is not real. It’s an excuse.
“I have a disability,” I said in the most cool, even meter I could muster, hands shaking with rage. “You can assume that I don’t ‘feel good’ every day, from now into eternity. I never ‘feel good.’ When I am unable to work, it isn’t because I don’t ‘feel good.’ It’s because I am incapacitated. That is why I have accommodations, for my disability.”
My voice wobbled on the last word, but I punctuated it with venom and let it hang in the air between us — not an elephant, not an ignored thing, but a monster unleashed, stalking the room. I wanted it to find her. I wanted its fangs deep in her heart. My disability is not a card I play for sympathy or favors, but if someone challenges my reality, I will unleash it upon them so they can see it for exactly what it is. I am not afraid.
I continued washing dishes, angry tears springing up in the corners of my eyes, and I willed them to retreat. I breathed slowly, blinked gently, and pushed them back out of sheer force. I would not cry. I would not sniffle. I would not dare let her see the way her words hurt me. It was only after she left the room that I took a gasping breath and stabilized myself against the edge of the sink.
“If you are an able-bodied person reading this, defend us.”
There are few things so demoralizing as having someone look you in the eye and tell you, an individual with a disability, that you don’t have a disability. That it’s all in your head. That you aren’t trying hard enough. That if you just did (fill in the blank here) then you’d be fine. You’re not in a wheelchair. You don’t look like there’s anything wrong with you. You’re a liar.
That’s the voice, the echoing voice that follows me in the morning when I wake up and hobble, joints filled with gravel, into the kitchen to make a cup of tea. Liar, liar, liar. It’s not enough that people like her call us liars. Somehow they manage to get inside our heads and make us call ourselves liars, too.
But I’m not a liar, and I know that. I know it every day, when my joints crackle and pop like rice cereal. I know it when I dump out a handful of medication — 10 or 11 pills a night, every night, unending. I know it when I sink myself into a hot Epsom salt bath, yet another attempt to relieve the angry pain of daily living; pain that comes not from over-exertion, but from walking across a parking lot, or turning my neck the wrong way, or from simply standing and one of my joints deciding to give out at that moment, stretching precariously without any natural capacity to stop itself.
I know my truth. I know my life. I know my body.
Half of the struggle of living with disability is the way able-bodied people treat us. So if you are an able-bodied person reading this, please don’t make our lives any harder than they already are. When we tell you we can’t, believe us, whatever it is. We aren’t “giving up,” “quitting,” or “faking it.” When we say we can’t, we can’t. We know our bodies better than you ever will. We live inside them, every day.
If you are an able-bodied person reading this, defend us. If you hear someone make a comment about our ability, our disability, or our physical capacity in general, stand up for us. Tell them, “It’s his/her/their body, they know it better than you. If they say they can’t, they can’t.” We may not say it out loud, but having an able-bodied ally come to our defense is such a positive, validating feeling in a world that is constantly invalidating us.
If you are an able-bodied person reading this, work with us. We want to be part of daily life. We don’t want to retreat into the shadows because of pain or mental or physical limitation. We may just need to participate differently. Ask us what we need, how we want to be involved, and help us find a way to make that happen. Odds are that it wouldn’t actually take a whole lot of modification for us to be able to participate fully — it just takes someone who cares enough to ask. Be that someone.
And if you can’t do those things (or rather, don’t want to, because unlike me, you are actually making an active choice); if you won’t believe my truth, defend me against hurtful people, or work with me to make the world one where both of us can be involved… then at least keep your opinions about my ability/disability to yourself.
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