Most of us, who have spent our lives using spoken language as a way to socialize and convey what we are thinking, do not ponder what it would be like if we could not do so. Most of us who are able to speak do not spend time imagining what it would be like if we could speak, but what came out of our mouths did not necessarily match what was in our minds, or wasn’t what we wanted to say, or was taken to mean something else. For those of us who speak and have little difficulty having a conversation with another it is difficult to imagine what it might be like if we could not speak at all. We easily tune out our environment allowing us to focus on what is being said by another person. Asking questions comes naturally, and without thinking we ask for clarification about things we don’t understand or want to know more about. When we cannot hear something or lose part of a sentence spoken by another, we ask to have the part we didn’t hear repeated, or request that it be said in a different way. And even so people misunderstand each other all the time.
But what if we could speak only a little and those hard-earned words we finally managed to say were met with confusion, irritation, even anger and led to misunderstandings. Or what if speaking words was so difficult it was easier to utter sentences constructed by others, sentences that held special meaning to us because it reminded us of a happy or sad or anxious or frightening time. Whenever one of those emotions surfaced, we would blurt out that sentence from the past, because it so beautifully captured what we were feeling now. Maybe though, other people who did not understand or know the meaning they held for us, took them to mean something entirely different.
A blogger friend, E. of the fabulous blog The Third Glance wrote an amazing piece, Words, a couple of years ago about trying to participate in a conversation with a group of friends. I’ve never forgotten that post, it was one of a number of posts that radically changed my thinking. You can read it by clicking ‘here‘. She describes wanting to keep up with a conversation that a group of people she knows is having in a busy place, while trying to filter out the noise that comes with being in a public place, the stress of trying to figure out when it would be appropriate to interject a comment, the pressure of knowing some sort of response is expected of her, and not being successful.
Yesterday Emma wrote, “Talking is easy, but saying what I mean is hard.” I understand that when she wrote that, she meant it literally. Emma “has language” yet cannot carry on a spoken conversation. Emma cannot answer with spoken words questions like, “What did you do in school today?” Or “What did you think of that movie?” Or “Which student in your class do you like best?” Or “What’s your favorite subject?” Or even “What are the names of the other students in your class?” or “Where do we go to borrow books?” As a result all those so-called reading comprehension questions are met with silence, or with words that seem to have nothing to do with the question asked.
The other person then draws the conclusion that Emma does not understand the question, or cannot read, or isn’t interested, or doesn’t care or is intellectually disabled, impaired, has a disorder, a disease, is afflicted, suffers from, is a puzzle piece, is locked in her own world or any other word or phrase used to convey what we believe to be true because of our understanding of her and those like her based upon what she can or cannot say with spoken words. This is the same girl who wrote, ““I can’t talk the way I think. Where is the label for that?” The same person who eloquently answered questions about functioning labels, stimming and autism, ‘here‘, ‘here‘, and ‘here‘.
“Talking is easy, but saying what I mean is hard.”
Emma Playing the “My Mouth is Glued Shut” Game
Emma's Hope Book 