The first substantial snowfall of the season was supposed to hit the next day, which meant my husband had to go out plowing with his boss. That day was also chemo-day for the neighbor he removed snow for.
“I’ve got bad news for you, honey,” my husband commented from his spot on our old couch.
I set my glass of water on the coffee table and sank down next to him. I could feel the bile riling itself up in my gut as worst case scenarios gleefully shoved their way to the forefront of my brain. “What is it?”
“You’ll have to shovel our neighbor’s house out tomorrow. I won’t be able to do it before leaving.” He frowned at me and stretched his arm over the back of the couch. “You can just tie a string around the handles of the snowblower, though. You won’t have to squeeze the triggers then.”
Oh, was that all? No huge deal. I was afraid he was going to say he’d lost his job or something expensive broke in the house.
He knows our ancient blower triggers my tendinitis and carpal tunnel. His solution was meant as a kindness, but I knew it wouldn’t work. “I’ll just shovel by hand,” I replied as I rotated my hands. I could already feel the stiffness setting in.
“But the snowblower’s so much easier,” he argued, propping a foot up on the low, dingy table. “If you just tie the handles, at least you won’t need to put pressure on your hands.”
I didn’t entirely succeed in keeping my jaw loose. “That doesn’t matter. The vibration still sets me off.”
He paused, before giving it another try. “But it’ll be faster.”
“Look,” I finally snapped, “I WISH I could use that thing without being in serious pain for the next two weeks. I WISH my hands weren’t like this, but there’s nothing I can do about it now. I’ll be fine with the snow shovel.”
He stared in silence at me for several moments before saying, “Ok. Well, you can use the black shovel. That’s easier to handle.”
“Yeah,” I replied, reaching for my water. “That’s why I use it.”
He’s finally figured out that I do things a certain way for a reason, even if they’re not the way he does them, but I wish interactions like the above were isolated to our marriage.
When it comes to invisible disabilities of any kind, we run into similar confrontations all the time. Usually, what works for everyone else won’t work for us, so we come up with ways to do what we must. Sometimes, we need help, but usually, we can manage on our own.
I’ve had it happen often with dyslexia, too. I can’t count how many times people have tried handing me their reading glasses when I commented on how bad a font is. When discussing the left/right struggle, I get a lot of “Oh, you can tell which side is left because you can make an ‘L’ with your left hand”, as well.
For the record, the “L” on the left looks the same as the “L” on the right to me. That’s why I feel for my wedding band whenever I need to do something left/right related.
People may mean well with their suggestions, but they don’t understand why they don’t help. I usually explain why the gestures are useless, although generally appreciated. If I need help, I’ll ask for it.
It’s incredibly frustrating to deal with this sort of thing in personal relationships, but that general attitude of “if it works for most people, it must work for you” permeates into work, school and medicine, as well.
I see it regularly when parents vent about the ongoing fights they have with the schools their kids go to and when other folks with invisible disabilities are trying to get what they need to do their jobs. There’s a marked resistance to listening to someone who doesn’t have some sort of visible indication of their differences.
Unfortunately, this leaves a lasting impact on people, especially when they’re kids struggling to get through the school system. Too often, it results in children not learning what they need to in a school environment, and sometimes it can result in job loss for adults. When it comes to medical care, it can result in death, illness or injury.
How do we resolve this as a culture? Can we? Or is it something we must live with?
Part of the problem is that there’s still the idea that the disabled community in general shouldn’t speak up about what they need. Those with invisible disabilities are expected to keep their challenges private for everyone else’s comfort.
In reality, that expectation of silence is the real problem. When we’re not treated like equals, it’s even harder to contribute to the world around us.
I’ll put some advice in handy bullet point form:
- Listen without judgement when someone needs help.
- Don’t assume ability level by appearance.
- Avoid judging someone who does something differently than you would.
- Allow people to talk about their disabilities without attempting to silence them.