Ray827: "What questions do you always get?"
ScribbleScribe: "From kids: Why can't she talk? [While pointing at me.] Then their parents try to explain that I can talk, but with my hands."
"From adults: Silence."
ScribbleScribe is a 24-year-old predoctoral psychology student who fielded questions yesterday, based on her life with congenital aplasia of the mandible and hearing loss. She did soanonymously on Reddit.
Her lower jaw, tongue, and the bones of her inner ear did not fully form in utero. She breathes through a tracheostomy (tube in her neck), and has since birth. She is able to hear, with aids, but she still has to get all of her nutrition through a feeding tube. She's never eaten solid food.
She drew a massive, curious, and generally effusively compassionate audience yesterday. Her writing is earnest and insightful. For example, she talks about keenly watching the progress of 3-D printing, as a potential for one day creating a mandible. And why she doesn't use assistive speech technology.
I rejected the assistive speech devices I was offered in elementary. I hated them. Why? Because the voice sounds so much different than the normal human voice. It cannot get pronunciation right. It cannot express emotion. Technology isn't advanced enough to give me the voice that I need/want. Imagine having a voice that couldn't express your intonation, your emotion, your beat ... rhythm ...It was just monotone. Sound fun? It wasn't for me. Science needs to give me an EKG headset to monitor my brain waves and incorporate it into any assistive speech device. It would understand my intonation and my nuances of expression better than just pictures on a box.
Sign language offers me my mode of communication.
Read the full article at the Atlantic