Featured Stories

Reading Between the Lines I Couldn’t See

I was born Deaf and lost my vision as an adult — but reading is my constant companion

Cristina Hartmann
Nov 3, 2018 · 8 min read
Photos courtesy of the author

The first time books changed my life, I didn’t even know what a book was.

My mother reeled when I was diagnosed as totally Deaf at four months old. She called it “the destruction of dreams.”

“I wanted to be a mother, a good mother,” she once told me before pausing. “But when you were diagnosed… I didn’t know how to do that.”

Thousands of miles away from her home country and still clumsy with English, my mother marched to the nearby library—a simple, local branch—and asked the librarian for help. The librarian arranged for books on early childhood education for Deaf children to be delivered. My mother brought them home and slowly made her way through the dense books, one dense sentence at a time.

These books gave her hope. They told her that I could learn and function like anyone else using Sign language. There was even a culture—a Deaf culture—where I could belong. With this knowledge and information, she got to work on being a good mother. She enrolled in a Sign class with me, and she went to Deaf events with me on her hip.

Our troubles weren’t over, however. These books spouted statistics that painted a dismal picture of my future: The average Deaf adult reads at a fourth-grade level. One reason for this was the widespread practice of banning Sign at residential Deaf schools, an approach that doomed many to a life of near-illiteracy and stunted development. This methodology, called oralism, lasted for over a century and only came to an end in the 1970s (and has arguably returned with the advent of cochlear implants). In addition, more than 90 percent of Deaf children are born to hearing parents. This means they grow up in households where spoken language—a language they have little, if any, access to—dominates.

My family all learned Sign language to varying degrees, but it never became the house’s lingua franca. Everyone reserved Sign for one-on-one conversations with me, so otherwise, I was left to catch snatches of words from lip reading. “What did you say?” was a frequent refrain of my childhood. “What’s happening?” The answers ranged from an abbreviated explanation to “Shh! Be quiet!” The realities of living in a household where people had to toggle between speech and Sign meant I lived a relatively linguistically meager life at home. I didn’t live a life immersed with language the way hearing children do. I couldn’t hear the words.

I found this hearing world a bizarre place. Everything I did made a racket — walking, rustling papers, clicking a pen — yet everyone told me to be quiet.

As an added complication, my parents were new to English themselves and had to learn Sign from scratch—not an easy feat. Our household was divided into two—three, in my case—languages. This state of affairs put more than my patience at risk. As Oliver Sacks points out in Seeing Voices, “if communication goes awry, it will affect intellectual growth, social intercourse, language development, and emotional attitudes, all at once, simultaneously and inseparably.” My mind was at risk of not growing as it should, leaving me cognitively stunted.

One way my mother compensated was by filling our house with books. My family went to the library with a wagon in tow, borrowing 35 books at one time (the maximum number we could take out) and carting them home. We returned two weeks later, all 35 books having been read cover to cover, and checked out more. I loved books because they gave me something I couldn’t find at home: complete understanding. I knew what everyone said because it was right there on the page. I didn’t have to bother anyone to understand what was happening because the author told me.

Then I was thrust into a new and strange world. At age six, I became one of the first recipients of a cochlear implant, a bionic ear that gave me a limited perception of sound for the first time. Two years later, my family moved, and I changed schools, going from being one of dozens of Deaf children to the only Deaf child in the entire district. Just like that, I fell into the hearing world—the world of sound.

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The sign for the phrase “deaf-world” is on the far right and the sign for “hearing-world” is on the far left. The space between these is no accident. The distance goes deep. In the Deaf world—where I had spent much of my childhood—sound was irrelevant. Everything from language to manners revolved around sight or touch. You conveyed tone with facial expressions. You tapped someone’s shoulder or stomped on the floor to get someone’s attention. These things just don’t fly in the hearing world, where sound matters so much.

I found this hearing world a bizarre place. Everything I did made a racket—walking, rustling papers, clicking a pen—yet everyone told me to be quiet. My forthrightness, born of a culture that prized communicative clarity, was seen as rude. When a classmate asked me what I thought of her haircut, I told her it made her look like a lopsided egg. When I stomped my feet to get people’s attention, they thought I was throwing a tantrum. I had to learn the rules, the culture, of this sound-filled world—quickly.

For solace and instruction, I pored over books. Emily Post’s Etiquette informed me that “[m]anners are the sensitive awareness of the feelings of others. If you have this awareness, you have good manners, no matter what fork you use.” The Babysitter’s Club series revealed the secret of building peer relationships: stand by your friends, even if others don’t. The more I read, the more I became fascinated by the world around me, and I became more confident in my ability to navigate it.

Adolescence is a time when most of us search for our identities, for a place to belong. My search was a convoluted one. A daughter of two Brazilian immigrants, I still couldn’t claim the label “Brazilian-American.” I hadn’t even learned Portuguese and had grown up more Deaf than Brazilian. I couldn’t lean on my Deaf identity; my cochlear implant and “hearing think” (a slur of sorts) made my place among the Deaf community precarious. I also learned of a degenerative eye condition that would one day leave me blind. Where did I belong amid this constellation of identities: Deaf, hearing, Brazilian, American, blind?

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I wandered among the library stacks as my peers grouped themselves outside. My fellow students rocked out to music, and I read 100 Years of Solitude and The House of Spirits, trying to find my inner Latina. (Right continent, wrong country. I had somehow ended up with Colombian authors instead of Brazilian thanks to my lousy aim.) As my Deaf friends raged against hearing oppression, I read about the civil rights movement. I read stories from every minority group imaginable, and the more I read, the more I began to understand that we’re all more similar than different.

The specifics of my problems might be different from others’, but we all struggle just the same. I might’ve been a heterosexual, light-skinned Latina with a complex Deaf identity, but that didn’t mean I couldn’t identify with a gay Black boy from the 1940s or an Arab girl in some dystopian future. We were all human. Once I abandoned my efforts at shoehorning myself into a box, I could just be me. Books taught me I was more than a label.

My love affair with reading nearly came to an end when the inevitable happened: blindness. When my sight took a turn for the worse at 27, I found myself in a visual fog. Lines I knew were straight now looked warped and broken. People’s features faded into blurs. Reading 12-point font was now out of the question, so I began learning Braille.

Most people imagine they would miss things of beauty like flowers and sunsets if they were to become blind. Not me. I missed books. I missed strolling into a library or a bookstore for a good browse. I missed getting so absorbed in a story that I forgot where I was. That beat a sunset any day.

As I learned to read with my fingertips, I worried. My local library didn’t carry Braille books. The books were enormous—about a foot long and wide and five inches thick—making them impractical to keep at home. They didn’t come cheap, either. A Braille edition of A Game of Thrones will set you back $229.95. (I liked the book, but not that much.) Even if a digital reading app was accessible via a refreshable Braille display, formatting remained clunky to the point of incomprehensibility. (The Kindle app had a habit of running sentences together, for example.) The prospect of a bookless future seemed quite real, and it terrified me.

Maybe sunsets look like washed-out blobs, but I could still read just about any book I wanted. That’s not a bad deal.

I emailed my local library and asked (begged) if I could somehow borrow Braille books through them. A kind librarian directed me to the National Library Service and Bookshare. The National Library Service for the Blind operates a consortium of libraries that will deliver reading materials in large print, Braille, and audio to people who are visually impaired. Bookshare is a nonprofit that runs an accessible digital library for people with print disabilities, which includes dyslexia and blindness. Publishers donate digital files of new releases, so Bookshare’s collection stays current.

Maybe sunsets look like washed-out blobs, but I could still read just about any book I wanted. That’s not a bad deal.

My boyfriend once said, “I think you love books more than me… and your mom.” The tinge of envy in his words made us laugh.

“Can you blame me?” I asked, a bit sheepishly.

“No,” he said, smiling. “Books were a powerful force in your life. They deserve your love for that.”

I smiled back, knowing that he understands me. Books guided me through life. They gave me knowledge and language. They counseled me through good and bad times. These are some mighty feats for a stack of paper with words on them.

Written by

Stringing words together and hoping for the best. Find me at http://cristinahartmann.com

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