Note: This essay was a finalist for the Women on Writing Creative Nonfiction Contest.
I have loved languages for most of my life. In second grade, my mother trotted out a few phrases of rusty French, dredged up from her days as a teenaged exchange student. She threw the words at me carelessly, with no idea the wheels she had just set in motion. Before that day, it had never occurred to me that one idea, action, or object could have multiple words assigned to it. It was as though I hadn’t realized I’d been living in a world of black and white until a kaleidoscope of colors seeped in.
After that, I was insatiable. I took children’s French classes at the local community college, went to French camp, and recited French poems in school contests. In high school I added German and American Sign Language. After college I taught English abroad in France and Germany before returning to the States to earn my doctorate in French.
And so it went, the course of my life—dictated by the beauty of words and the power of language.
My oldest daughter, Rosemary, fit the shape of this life perfectly. When she was small, I spoke to her in French and, without hesitation, she parroted it back to me. On our walks to school, she would fire all manner of questions at me about the origins of words and their various pronunciations.
My youngest daughter, though, was different. The few words JJ uttered at the age of one soon vanished. I knew she understood what was said to her, but she couldn’t produce anything more than a handful of garbled sounds. At three years old, she was diagnosed with Rett Syndrome—a rare, progressive disorder that robs people of their mobility, purposeful hand use, and ability to speak. From her doctor, we discovered that JJ’s words would never come back.
Rett Syndrome slowly wrests body function from those who have it. We learned that, in the end, Josephine’s eyes were likely to remain the only truly reliable part of her body. This meant that the only way for her to communicate would be to do what other people with Rett do—learn to use a high-tech eye-gaze device.
An eye-gaze device works by tracking eye movements. The user scans a set of icons on the screen and then “pushes” the icon they want by holding it in their gaze for several seconds. The machine says the desired word or phrase out loud. People who become adept at eye-gaze technology can learn to use their devices to read, write, hold conversations, crack jokes, perform mathematical equations, or even create paintings and poetry.
When JJ was four, we got her one of these devices. Before long, she was putting together short sentences. She quickly began issuing commands and expressing desires like JJ go car, want eat cookie, or eat potato chips dining room. Sometimes, all it took was one word, like the time she told me she wanted to share my food by simply looking at it, then pushing yum.
JJ’s device allowed my daughter to be what she had always wanted to be: a four-year-old. Every morning she told her therapist to go home. She demanded to be fed cookies and whipped cream. She told her teachers she loved princesses and was very sassy. It was breathtaking how a handful of words—strung together in meaningful ways—shaped my daughter into a person the rest of the world could see, hear, and appreciate.
JJ’s electronic voice also created stronger relationships with the people in her life, most importantly her sister. Rosemary learned to program the device and soon created a series of phrases that greatly amused both girls. Now JJ could say things like Give me hugs this minute, I am the cutest girl ever, or Mama is mean. When Rosemary showed me what she had done, I watched, teary-eyed, as my girls giggled conspiratorially over a shared joke for the very first time.
But JJ’s device didn’t just allow my daughter to express herself or connect to others. It also gave her agency. One day, when I was talking to JJ about how other people perceive her, she turned to her device and told me want stop baby. JJ is small for her age, and her wheelchair resembles a stroller. Adults who don’t know her well often talk to her in a high-pitched voice, and at least once a week, another child points out what a “cute baby” she is. I’d often wondered if these things slipped by unnoticed or if they were distressing to JJ.
“Are you saying you want people to stop treating you like a baby?” I asked my daughter.
JJ held my gaze with blazing intensity—her way of saying a definite yes.
“Okay, then,” I told her. “I’ll make sure everyone knows how you feel.”
Before JJ, I had only thought about language in one way. I had always focused on how knowing a country’s words could allow you to discover that country’s secrets, to see it from the inside. But what I never realized is that language can do the same for people. The eye-gaze device—JJ’s own form of language—has laid bare my daughter’s hidden places. It has unlocked her, permitting her to be viewed as so much more than her uncooperative little body.
One night, soon after JJ began talking with her device, Rosemary was in the living room, programming more words into her sister’s machine. Afterward, she skipped into the kitchen where I was busy cooking dinner.
Rosemary turned to me, a look of wonder on her face. “You know, Mom, I never imagined JJ could have a voice or talk to us,” she said. “It’s kind of like a miracle, isn’t it?”
I looked at my oldest daughter and smiled.
“Yes,” I told her. “It kind of is.”
How do you view language? Do you have any experience with the world beyond spoken words? Let me know in the comments below.