One of my earliest memories is going with my mother to pick up my older brother at school. We’re nine years apart. I was just beginning elementary school and he was in high school.
I said something, what, is beyond my memory at this point. My brother couldn’t understand what I said. He turned to my mother, who immediately interpreted.
I remember feeling a great sense of belonging and being understood. Mom got me. When others were at a loss about deciphering my words, Mom knew them.
What happens, though, when things change? When you’re an adult, on your own, with no loving parent with you who innately and lovingly knows what you’re saying. What happens when you’re well into adulthood and acquire a disability that forever alters your speech?
How do you accept not being understood? How do you ever get used to people turning away from you because they are too uncomfortable with their struggle to understand you? How do ever adjust to the condescending nod of the head or smile that of course they know what you’re saying,when they really have no clue? Or worse, say rude and cruel things because they can’t understand you?
It’s definitely a lonely place.
A reader recently asked me about coping with this kind of isolation. While you may need to accept the “disability accent” in your voice or even not being able to verbally communicate at all, it’s very hard to accept not being understood and the unkindness of people without patience. It can lead to a tremendous sense of isolation. You’re putting forth so much effort, only to have it not received.
People sometimes at best can be thoughtless by not even trying to understand, nodding the head, and passing by. At worst, they’re rude and make you feel like it’s your fault they can’t understand you. Years ago a clerk at a grocery store laughed at my answer to how many donuts were in the bag, and said, “Say that in English.”
Ahhh, how the heart can so quickly close when words can’t be processed by the mind. It hurts. If you’ve been reading Radiant Living with Disability for a while, you know I’m going to say you have to allow yourself to feel the pain. Don’t hold it in you. Don’t let someone else being unconscious and rude, block your WONDERFUL ENERGY.
Feel the hurt. Yes, it sucks (I actually don’t like using that word, but sometimes it’s the most appropriate one). People can be so unkind when they’re uncomfortable. Feel the anger too. Allow it to fuel you. They’ll make you look like the problem. You’re not, though.
You’re the answer.
Keep communicating no matter what. The world needs your voice, whether it’s your “disability accented” voice, a machine generating your words, words you write or sign, sounds you make, and/or your body language. The world needs opportunities to grow in patience and understanding of WHAT IS DIFFERENT. It’s the only thing that will ultimately save us.
You can always rest assured that your heart and very being communicates way more than your words.
And if you should need a snarkier path to the “higher road,” take a colored index card and write or have someone write for you, “You don’t know what you’re missing.” Flash it when you get some impatience or rudeness. Sometimes snarky is a great means of enlightenment.
I’ll be live on Facebook tonight at 8pm (EST) to talk about this and would love to hear from you! Tune in, share your thoughts, or message me on Facebook ahead of time a question or a comment.