On Life Without a Jaw

By James Hamblin

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."

meritbadgeman.jpgkatydid18/imgur

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 so anonymously 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.

Here are some of the questions she answered, coming in from hundreds of readers, and followed at any given moment by around ten thousand. Among the most interesting things she talked about was her experience with formal education. She now attends Gallaudet University, in Washington, D.C., which was established in 1864 as the first institution of higher education serving deaf and hard of hearing people.

I went to a hearing school for 11 years. I was mainstreamed and had a nurse/interpreter in every class. In twelfth grade I decided to transfer to a deaf school, and I graduated there with honors. For college, I went to hearing schools, but again I felt lonely. So I decided to go to a deaf college, where I've been ever since.

"Pros/cons to mainstreaming in a public school? My daughter is very different than other kids in terms of looks and behavior, but she is very smart. She's starting a new school and I can't decide whether or not to insist she be mainstreamed or left in the special ed classroom."

No special ed classroom. They tend to shut the kids away with lesson plans that are lower in quality than for the able bodied students. The Deaf schools I've gone to have been in worse quality academic wise than their hearing counterparts. I traded quality of education for ease of social communication and the prestige of going to the only Deaf college in the nation.

However, I don't think I would be doing so well at Gallaudet had I not gone through the rigors of the hearing mainstream classroom and had been introduced to a love of reading at a young age.

Mainstream.

"First of all, congratulations on going to college! It's amazing that you have overcome so much and your parents must be so proud. What is the hardest thing about your situation that you have to deal with daily? And what are your hobbies and interests?"

You know. I don't feel I have overcome anything. I've just done the things that everyone else has done. I can hear people speak very well with my hearing aides, so I feel I have had an advantage in learning language over the Deaf students I've been around. So it's really a no-brainer that I'd be capable of going to college.

What's the hardest thing? The hardest thing for me for years was the loneliness. 

[IMAGE DESCRIPTION]
(Evan Vucci/AP)

"Do you get any enjoyment out of food or is it only for subsistence?"

I get enjoyment out of food in the sense that it makes me feel full. Feeling full feels good, as opposed to feeling hungry. Also, I like the smell of my food, although the smell for other people turns them off.

"Do you believe in God?"

Heck no. Atheist here.

"With such a visible condition, do you experience people treating you as if you're mentally different from them? I know this is one of the terrible things that follows looking different. People think you're fundamentally different to the core, usually thinking you're mentally challenged, even if you're a genius. I'm sorry if that sounds rude. I work with disabled people and mentally challenge people, so it's something I care about a lot."

I'm glad you care. I wish more people did. People with disabilities have to deal with people assuming that since they have physical difficulties that they must not be as bright.

I myself assumed that people with cerebral palsy were ... slower than average. I have no idea why I thought this. I had a friend with CP in high school and did a paper on it and everything. Then, when I got into a psychology course in college about kids with disabilities, it was explained to me that people with CP, even though they have jerky movements, their brains are unaffected. I felt ashamed of myself after I learned that. People with cp that are deaf at my school and use sign language are harder to understand than most. People avoid the deaf-disabled and it's something that needs to change. ...

"Can you laugh?"

Yes, I can laugh, and do often. It doesn't have any sound to it like most people's laughs. My whole body shakes and my breathing comes out in short bursts. ... 

"Kids can be so lame. Thank you for sharing your story. I wanna be your friend!"

I think kids do what adults are doing in their heads constantly but will never say to my face.


For the fringe stories on perversions of an anonymous commenting community that make the biggest headlines about Reddit, there's a lot of excellent stuff happening there every day—giving a massive, interactive platform to people with interesting perspectives. 

The entire Ask-Me-Anything is here.

This article available online at:

http://www.theatlantic.com/health/archive/2013/08/on-life-without-a-jaw/278794/