When I was in eighth grade, my last school musical was “Annie.” I was hoping to land the role of Grace Farrell, Daddy Warbucks’ secretary and one of Annie’s caretakers. Alas, the morning of the callback, the list was posted and as expected, I didn’t receive a callback for her. But, my friend Jenny* got a callback for her and I was excited for her. Between classes, I happened to see Jenny and came to congratulate her on the callback. Because of my dysarthria, a speech disorder that I have through my cerebral palsy, Jenny didn’t know what I was saying.

“Callbuck?”
“No, callback.”
“Mullback?”
“Callback.”
“Starbucks?”

At this point, I was fighting tears as I was trying so desperately to say “callback.” To make things more humiliating, a teacher was walking by and she tried to help both of us by finding out what I was saying. The teacher thankfully got “callback” and Jenny happily thanked me. That was the first time ever I felt humiliated and ashamed by my dysarthria. And it wasn’t the last.

One situation led to two retail workers getting their manager for me at a shop after I simply said, “I’m looking around for fun.” Another caused me to have an actual emotional breakdown at a counselor’s office. When I was working at Disney World, I brought my dad’s death up in a conversation and the guest’s reaction? “Cool.” I sighed. I know he didn’t know what I just said. “Sir,” I said in an un-Disney, annoyed tone. “I said that my dad died.” The guest, bless his sweet heart, gasped and freaked out that he misunderstood me.

Dysarthria is a daily struggle for me. Don’t get me wrong, it isn’t that terrible and my youthful voice comes in handy for acting opportunities. However, when you hear “What?” or “Can you say that again?” literally on an hourly basis, you get tired quickly. It doesn’t matter if it’s the simplest word or a whole conversation. A simple question from me gets just a nod from that person and then I have to say, “That was a question.” It’s draining. It’s exhausting. I sometimes feel like I want to cut off my tongue so I can get rid of this feeling.

I snap at my mom a lot because she does not understand me. Snapping at friends is uncommon, but it has happened once or twice. If I snap at you over my dysarthria in the future, I am extremely sorry. But at the same time, let me get frustrated. It’s strangely therapeutic for me in a way. I’m a human, and a human with a challenge at that. Obviously, I won’t beat you up or cuss you out.

But, walk a day in my foot braces. How? Find a way to grab your tongue and try to speak to people like that for a whole day. Get a sense of what my voice is like and how different it is to speak normally. Notice how your voice sounds and what words you can or can not say. Speak like this to everyone and notice how many “What?”s or “I don’t know, sorries.” that you’ll get. Awful, is it? Welcome to my life!

*=Name changed for privacy reasons

dysarthria

When I Feel Like No One Speaks My Language as Someone With Dysarthria

Does anyone here have #dysarthria I need an understanding friend to talk to who will understand my #RareDisease

#dysarthria #Research #AuditoryProcessingDisorder

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