“How are you feeling today?” Do you want the honest answer, or the socially acceptable one? I’ll tell you I’m good, but that’s just because you don’t want to hear about how my joints feel like they’re on fire, my vertigo is making me see three of everything, that weird pain in my abdomen is back, and to top it all off, my allergies are absolute murder today. But hey, we gotta work through it.
Truly bad days aren’t as common as they used to be, thanks to my infusions, but days like today are still the norm. It’s the kind of day where when the nurse asks you to rate your discomfort, you say it’s only a 7. Which for you, you can deal with. A seven is bearable. After all, when your baseline is a 5-6, it’s only marginally worse than usual.
I remember a few years ago I injured my back. I was stuck in the recliner for three days before my parents were able to convince me to go to the hospital. That’s how much I hate the ER. When I got there, the triage nurse asked me to rate my pain on a scale of 1-10. I could imagine worse pain existing, so I said it was probably somewhere around an 8-9.
But then, she said something that changed my life.
“Honey,” she said, “I know you can imagine something worse. But right now you’re stuck in a wheelchair, you can’t stand up or walk, and you can barely speak. You’re at a 10. You don’t always need to try to tough it out and work through it. Sometimes it’s okay to say you can’t.” What is the meaning of this? You mean I don’t always have to grin and say everything is okay when I feel like this?
It’s along the same lines as something my oncologist, one of the most amazing doctors in the world who should be given all the puppies, once said, a year later: “Nick, love, being in pain is not normal. If something is hurting, I need you to tell me, so that we can see if it’s something we can take care of.” Pain is… not normal? In what world? Certainly not mine.
Ever since that, I’ve taken a totally different viewpoint on pain.
Sometimes you can’t work through it.
And that’s okay. Today, I was lucky. It was one of the days I was able to push myself and work through it (literally; I had truck duty at work today, so lots of unloading gigantic bags of cat food onto the shelves- exhausting and painful). But hey, I’m also really lucky in that I have an amazing boss who understands that I just can’t lift heavy things, so he doesn’t make me do the huge stuff. Unfortunately, though, not everyone has as good a boss as me. And what does that mean?
The dream job for pretty much every zebra is one where we can be our own boss (refresher– zebras are those of us with unusual health conditions). Why is that? Well, most places deem us “unreliable.” When you need accommodations, when your attendance is iffy at best, you’re “unreliable.” When you can’t cover hours last minute because you have at least one doctor’s appointment every week, you’re “unreliable.” Can’t come in on your day off because you’ve worked the last five days in a row and if you do anything else besides be a sloth for a day, you’ll end up injuring yourself? Unreliable.
Again, fortunately, none of that currently applies to me; my boss is fantastic. But that’s not the case for many of us. So often I’ll see posts from other zebras or hear from talking to them about how they can’t hold a job down due to their health.
So why aren’t we talking about the bigger issue?
The bigger issue is how society as a whole looks at those of us with disabilities. Things I’ve heard multiple times either directed towards myself or someone else- “You don’t look disabled!” It’s called an invisible disability, Karen. “You’re too pretty to be in a wheelchair!” What does being pretty have to do with being a wheelchair user? “You don’t look d/Deaf!” What? Are d/Deaf people supposed to look different from other people somehow? And my all-time favorite, “Oh, how are you able to date if you’re disabled?” The same way as everyone else, except maybe a few more nights in watching movies than going for long hikes, I guess?
Oftentimes, we don’t even have to be labeled as unreliable. Sure, it’s not legal in the US to specifically not hire someone because of a disability, but let’s be real- it’s a common practice for employers, if someone discloses their disability on their application, to find some reason not to hire that person. Even if it’s as simple as “I don’t think they’ll be able to perform the tasks needed”: how do you know? Or are you just not willing to provide fair accommodations to enable this person the opportunity?
Even worse,
it’s perfectly legal to pay people with physical or mental disability under minimum wage, or “subminimum wage.” Even getting in a serious relationship with someone is a risk, if you’re on disability benefits. Getting married can cause you to lose your benefits altogether. And even if you don’t tie the knot, they might see you as “holding out” and lose them as well. You also have a resource limit- you can have no more than $2,000 to your name. And, in the uncommon occurrence you’re able to get married without losing your benefits, the two of you, as a couple, can’t have more than $3,000 to your name. You even have the amount of money you’re able to make limited- no more than $1,350 per month, or no more than $2,260 if you’re blind.
If society is so determined to leave us destitute, what are we to do?
Many of us, including myself, choose not to make our disabilities widely known. Besides the risk of becoming a social pariah that comes with disability, there’s the risk to our jobs. But those of us who can do that are, in a way, the lucky ones. We can work through it. But not everyone has that “passing privilege.”
I don’t have all the answers; I don’t think there is one single stand-alone answer that can solve everything. But as a society, we have to make strides to not push those of us with disabilities off to the side as if we’re expendable. Because we’re not. Some might say, “But you’re just not as productive as other members of society!” But is that true? Are we not? Or are we just not given the accommodations we need in order to be just as productive as anyone else? Furthermore, why is how “productive” we are seen as the deciding factor in our worth? Do we not have our own inherent worth as human beings?
How many times have you felt you had to work through it, despite knowing it would be of direct detriment to your well-being? Do you have any ideas as to how we can change all of this?
Until next time,
Nick
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