Vicariously Disabled.

I doubt he even remembers enraging me. But I almost screamed at him.

I’m still not sure whether it was his fault.

But let’s rewind. I have a friend who has pretty severe walking issues – he gets only so many steps in a day before he collapses. Most days he can get to nightfall without needing a walker – and he works hard, very hard, not to be seen as a burden.

More so, he struggles to be seen as a person. If you’ve never friended someone with a disability, you don’t quite understand how a visible handicap can eclipse someone’s personality. People tend to assume that everyone in a wheelchair acts the same – they talk a little louder, a little slower, they’re quicker to dismiss their opinions because really, do they know what they want?

Disabled people struggle to be seen. And my friend, well, he worked really hard to be more than his disability –

– which meant he pushed himself hard at conventions. Lots of covert sweating, casually leaning on bars, sitting down when they could. Because if he displayed weakness, the conversation would shift from all the happy things that made his life worthwhile and would focus on “Are you all right?” – which is a question he asks himself entirely too damn much as it is.

He wanted the con to be a vacation and not an explanation. Which was why his disability was, largely, not quite a secret among friends but something where the extent wasn’t entirely revealed unless you were in the know.

And my friend had held up well during the day but was starting to fade in the evening. He was looking for, well, let’s call him The Guy Ultimately I Wanted To Yell At, or Tguiwtya.

He was looking for Tguiwtya. Because he was good friends with Tguiwtya, and and wanted a few moments to hang with Tguiwtya to hang out before he collapsed. And my friend texted Tguiwtya to say “Hey, I’m on my way,” and Tguiwtya had said “I’m in the back of the ballroom.”

Tguiwtya was not in the back of the ballroom.

I ran into my friend, looking exhausted, who asked me if I’d seen Tguiwtya. I knew he’d walked all the way down from their room to meet Tguiwtya, exhausting the very last of his daily steps, and getting back up to the room would be an effort. I said I hadn’t.

He plopped into a chair, sweaty, miserable, waiting for Tguiwtya to show. I kept him company, brought him water. But Tguiwtya wasn’t responding to texts. And eventually, my friend said, “Well, let’s see if I can find him,” and staggered off, leaning heavily on his cane.

I wondered if he was going to make it.

I left. And lo, a couple of hallways down, there was Tguiwtya! Merrily laughing with a bunch of his friends. I collared him.

“Hey. Our friend’s walking the halls looking for you.”

He looked puzzled, as if unsure why I’d bring such a trivial thing to his attention. “Yeah,” he said. “That’s fine.”

I almost screamed.

What I wanted to yell was, “Do you fucking realize how much effort it takes for my friend to find you? You said your dumb ass would be at the back of the ballroom, and they exerted themselves to get to you because they like you, and now they’re straining themselves to find you again, and your answer should not be some pudding-faced ‘that’s fine’ but ‘Yes, sir, I will get right on that.'”

Then I saw Tguiwtya’s friends, crooking their necks at me.

Did I want to make a scene?

Was it worth looking like a fucking maniac in front of all these people, just to make a point about someone’s condition? Because they didn’t know. They couldn’t understand unless I literally barged into their conversation, twisted it, made it about this, and….

Oh.

Shit, that’s gotta be what it’s like all the time, isn’t it?

Let’s be honest: Tguiwtya should have fucking known how much effort it took my friend to walk all the way down to meet him. I know for a fact that my buddy had talked to Tguiwtya about his illness. He was one of the inner circle, one of the folks who’d pushed a walker for my friend.

But how many times do you want to call some able-bodied person out for not comprehending something that they cannot experience? For Tguiwtya, “walking to the ballroom and back” was such a trivial effort that I doubt he even contemplated it as an effort.

Would I be damaging Tguiwtya’s friendship with my friend by explaining what an accidental asshole they were being?

That was, I realized, a brief window into being disabled. People don’t see your illness, even when you make it clear to them. They can’t comprehend that this background static of their lives could be a deafening uproar to anyone else.

And you always get to choose: make an embarrassing fuss and maybe get accommodated, maybe get rejected – or keep the peace and keep a friendship that means less but at least you get to keep it?

To this day, I’m still not sure if I should have yelled at him. Maybe I should. But he wasn’t my friend, and even if he was, I’m not sure I wanted to dress him down in front of a crowd of people.

What I do know is that I doubt Tguiwtya even ponders that moment. If he does, he thinks of me as the asshole who gave him a vicious side-eye when he didn’t break off his amusing anecdote to rush to meet our friend in the ballroom.

But I remember.

I learned something that day.

I hope I learned to listen.

1 Comment

  1. Morgan J. Allgood
    Jun 27, 2017

    As another disabled person, I thoroughly identify. Life doesn’t end when you have a disability, you still want to do the things you enjoy, often even more because it serves as a distraction and often a reason to keep on keeping on. That said, it takes more effort, and you don’t want to be a bother because when folks see you as a bother to accommodate they drift away. So one does one’s best to soldier on and play n0rmal while others seem to have blinders on to the difficulties even if they are in the know. Or, on the other hand, they will set you on a pedestal and call you brave and a hero just because you are living your life and doing the stuff ordinary people do. Meanwhile, one wishes for a middle ground of just treat me as a person, and respect and make reasonable allowances for my limitations.

    I fully identify with the invisibility aspect, too. For one, people’s eyes tend to be focused on what is 4 to 7 feet from the ground, depending on the individual’s height, straight in front of them. They do not perceive anything lower than that until they run into you or step on your service animal, or you project your voice and make them look down — this I often have to do when trying to get a clerk or customer service person to notice and assist me in the store and not skip me over even though I’m obviously next in line.

    Am I bitter? Not a bit. Often frustrated, yes, but it (both disability and people) is what it is. Disability gets put into the “This is life and crap happens,” pile and I do my best to live my life and stay positive. And people, people are just doing their best and yes, it can get frustrating for the bus drivers (who often don’t like having to take the extra time to lower the ramp, lift the front seats, and strap in me and my wheelchair, much less deal with the service dog I have along with me) and other service people that one runs into in daily life, to friends and family, but again this is just part of life and crap happens, and I do my best to appreciate them, be positive and cheerful, and show gratitude to them who are present. I say “Thank you,” more now with a physical disability than I did before that, and say it with more heart than I did before.

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