"You look normal" is the most difficult thing to hear. Working with an invisible disability
"You look normal" is the most difficult thing to hear. Working with an invisible disability
"Oh, you have a disability? You look completely normal to me."
I don't know how many times I've been told that. I know they don't mean any harm. They might even think they're paying me a compliment.
But every time I hear those words, I feel something I can't quite put into words.
"Looking normal" means "looking like you're not struggling." And looking like you're not struggling leads to the assumption that "you don't need any accommodations, right?"
That's not true. It's just invisible, but there are days when I'm falling apart on the inside.
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I work in a factory under a disability employment program. I'm in my late 30s. In this note, I record my days of working while being worn down.
This time, I'm writing about working with an "invisible disability." This is about people who don't have "visible disabilities," like those who use wheelchairs or canes due to physical impairments.
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■ Because it's invisible, people don't believe me
My disability isn't apparent from the outside.
I can walk normally. I can talk normally. I can do my work normally. At least, that's how it looks on the surface.
That's why people are surprised when I tell them I have a disability. I've even been told, "You're lying, right?" I'm not lying. There's no benefit to lying just to work in a disability employment position.
Because it's invisible, people don't believe me. Because they don't believe me, it's hard to ask for accommodations. Because it's hard to ask for accommodations, I endure. Because I endure, I break down.
I believe this cycle is the hardest part of having an invisible disability.
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■ The pressure of being told "You look healthy"
Even on days when I'm not feeling well, people tell me, "You look healthy."
I'm just putting on a face. At the factory, if I look gloomy, people ask, "Are you okay?" It's a hassle to answer that, so I put on a "normal" face. When I put on a normal face, people tell me, "You look healthy."
I'm not healthy. But I can't say I'm not healthy. If I do, it goes back to, "Oh, but you look normal."
So I smile. I smile, go home, and then I collapse.
This "cost of putting on a normal face" is something people with invisible disabilities pay every day. People without disabilities don't have this cost. This difference is absolutely invisible from the outside.
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■ Treated as a "regular employee" despite being hired under a disability program
I was hired under a disability employment program. The company knows. HR knows.
But on the floor, I'm sometimes treated like a "regular person."
"You're in the disability program, but you can do things normally, right?"
This is meant as a compliment. But behind these words is the implication, "So, do as much as a regular person."
The reason I look like I can do things normally is because I'm making adjustments behind the scenes. Changing earplugs, continuing to go to the hospital, doing nothing on weekdays to conserve my energy—that's how I finally manage to reach a level where I "look normal."
That effort is invisible. Because it's invisible, I'm treated as someone who "can do things normally." Once treated that way, it becomes harder to ask for accommodations.
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■ Being told "There are people who have it worse"
I think this is a common experience for those with invisible disabilities.
"People in wheelchairs have it much harder."
"Compared to people who are blind, you're better off, right?"
"At least you can walk, so that's good."
Maybe so. But there's no point in ranking suffering.
You wouldn't tell someone with a broken bone, "You're better off than someone who lost their leg," would you? Yet, there are people who will say that to someone with an invisible disability without a second thought.
An invisible disability is one where you are constantly doubted about whether you are "truly suffering." You have to prove your pain. That in itself is painful.
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■ Even so, I'm glad I chose disability employment
I've written only about the hard parts, but I don't regret working in a disability employment position.
There was a time when I pushed myself in a regular job, broke down, quit, and became a recluse. Compared to that time, things are much better now.
What I've gained through disability employment:
・A position where I can confidently use reasonable accommodations
・Special leave for hospital visits
・A boss who tells me "You don't have to push yourself" (I was lucky)
・The peace of mind of not having to hide my disability
These are all things I couldn't get in regular employment.
It's hard to be told "You look normal." But it was much harder when I was hiding my disability and working in a regular job.
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■ To those working with an invisible disability
To those who have felt uneasy after being told "You look normal."
To those who have almost denied their own pain after being told "There are people who have it worse."
Your struggle is real. It's just invisible, but it's not a lie.
The reason you "look normal" is because you are making an effort every single day. No one else sees that effort, but you know it's there.
And that's enough. That's what I try to tell myself.
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If you read this and thought, "I understand," please hit the like button.
I want to know how many people are working while putting on a "normal face" with an invisible disability.
Kezuri