When I was 11, my 13-year-old sister locked herself into her room in a fit of teenage angst. Before she quarantined herself, she covered my parents’s bathroom mirror with post-its detailing their every transgression. As you might’ve guessed, there were many. One crime was that our parents paid more attention to me.
It was a complaint that all older siblings seem to have. This time, there was some truth to it. My parents, especially my mother, had spent a lot of time with me growing up. They took me to Sign classes so I could learn to communicate in a language that didn’t require that I hear. They got up when it was still dark so I could take the one-and-half hour bus ride to the deaf program across town. When I got a cochlear implant at age six, my mother spent hours upon hours drilling me on sounds. That was the kind of attention I got but my sister didn’t because I was deaf and she was hearing.
As I read the note, a strange mixture of guilt and gratitude came over me. Gratitude for the grace and aplomb with which my parents had responded to my deafness. Guilt over what my sister felt because of my parent’s willingness to make room for me. Such is the bittersweetness of growing up deaf in a loving hearing family.
A Signer in a Speaking Household
I often watched my mother talking on the phone, her lips moving in mysterious and incomprehensible ways. I didn’t bother trying to lipread as I had too little context to guess at what the lip movements meant. I wondered to whom she was talking, what they were talking about, and if it was important. When she got off the phone, I peppered her with these questions. My mother usually answered … unless she didn’t have time. Then she would tell me “I’ll tell you later.” Later almost never happened. My father, who hated talking on the phone, gave me cursory answers that told me nothing. My sister told me to stop being nosy, my questions just another dose of my annoying little sister-ness.
Soon after my diagnosis of profound deafness at four months, it became clear that speech wouldn’t work for me. I was too deaf and I had never known sound. To ask me to listen and speak wasn’t hard. It was impossible. This was in the days before the commercial availability of pediatric cochlear implants, so Sign was my best option. My family had to learn Sign to communicate with me. This didn’t mean that everything went smoothly.
My father often boasted that he surpassed my mother in the first few months of Sign classes. What he never mentioned was that he never moved beyond the fragmented diction of an inequolent toddler. He often moved his hands jerkily in the signs for coat-cold-out, which I translated into: Put on your coat! It’s cold outside. I also mentally added: You’ll get sick if you don’t bundle up, and I wouldn’t want that. I nodded, smiling at his predictability, and followed his directives. If I had to tell him something, it often turned into a production where I used a combination of gesticulations, signs, and lip movements to make myself understood. Our conversations, if we can even call them that, rarely involved anything more abstract than my neglected chores.
His stunted signing wouldn’t surprise anyone who knew him. Even after 40-plus years in the United States, his English remained as stilted and heavily accented as a newcomer’s. He wasn’t much better in his native Portuguese, either. He called any sort of talk beyond the most necessary directives “nothing talk.” He lingered at gatherings for the minimum amount of time that was socially acceptable before he went off to his true language: mathematics. He spent many nights hunched over his formulas for his research in computer science. Talking — in Sign or speech — never suited him. Doing things did. I learned that he spoke far more eloquently through his actions than he ever could in words.
My sister learned far more quickly than my father, becoming an exceptional fingerspeller. Her fingers moved so fast that they were readable only by an expert eye. She, however, never learned more than a few signs, preferring to fingerspell everything with her lightning-quick speed. This made our conversations look lopsided with me signing and she fingerspelling. No matter how fast she was, fingerspelling remained a slower and more cumbersome than Sign. This gap didn’t hamper us from doing the ordinary sister things. We played. We fought. We made up. It wasn’t perfect, but it was good enough.
My mother became the best signer of the bunch. She threw herself into Sign with her characteristic verve, eventually surpassing both my father and sister in skill and knowledge. Her enthusiasm only carried her so far. A hippie who had missed Woodstock by a decade, my mother was a consummate free spirit. She drifted from one interest to the next, learning about all and mastering none. Our basement became a graveyard of abandoned cross-country skis and unfinished embroidery. Her attention must’ve wandered before she mastered Sign’s minutiae, leaving her a charmingly idiosyncratic signer whose smile often made up for her mistakes.
As the best signer in the house, my mother became my de facto interpreter when necessary. She did this with a surprising amount of professionalism, sternly instructing the hearing person to talk directly to me and stood to the side to translate. Her role as my conduit to the hearing world meant that we spent a lot of time looking at each other, absorbing each other’s words. “I knew how your mind worked,” she told me once. “I could almost see the words forming in your head when I looked at you.” This bred a special form of intimacy between us that has lasted to this day.
The linguistic asymmetry also extended to the form of our singing. I use the term Sign here because my family didn’t sign American Sign Language (ASL), the natural and organic language of the Deaf. They signed Signed Exact English (SEE), a signed representation of English created by linguists. The latter was what I signed at home; the former what I signed outside the home with other Deaf people.
SEE and ASL are fundamentally different ways of expressing yourself. SEE is a sequential language because it is modeled after a spoken language where one word comes after one another in a neat little line. ASL isn’t so limited. Since the hands and arms can move in all directions, ASL — and any other organic sign language — is spatial and three dimensional.
Let’s try this sentence to illustrate the difference: I’m going to give him candy. You express this in SEE as fragmented signing that reflects English grammatical elements. (I) (am) (go)(ing) (to) (give) (him) (candy) That’s a total of eight signs that would’ve been said or writtenn as six words.
The same sentence in ASL comes out completely differently. You first stroke your chin twice with your index and middle fingers, the sign for candy. Then you raise an index finger and keep it up in the air, indicating a generic pronoun (ASL has gender-neutral pronouns, but you can specify the gender with a separate sign for him or her). You move your other hand outward in the sign for will to show that the upcoming verb is in the future tense. Now comes the verb, give, a hooked index finger, which you move from your chest to the raised index finger. This movement shows that you are giving the aforementioned candy to the person represented by the index finger. That’s just four fluid signs (albeit described at the expense of many words). Compare that to SEE’s eight disjointed signs. ASL uses space to convey prepositions and tenses in a way spoken and written (sequential) languages cannot.
My family learned SEE because it was fashionable back in the 1980s and 1990s. Many experts believed that the only way for deaf children to become fluent in English was for them to be immersed in English in the same way that hearing children are. They created SEE and other manually-coded English sign systems to create that effect, albeit via Sign. What they didn’t realize was that strange things happen when you flatten a three-dimensional language into a two-dimensional form. A 1991 study by Samuel Supalla showed that children who had only been exposed to signed English still employed spatial grammar even though they had never seen such things before. A pattern of spatial, three-dimensional sign languages continued as people discovered that even sign languages developed in isolation use such Nicaraguan school of the deaf and a remote Bedouin tribe in Israel. This urge to shift from two-dimensional to three-dimensional signing seems to be irrepressible and absolutely natural.
My childhood has been a patchwork of languages and communication methods. Such is the reality of growing up deaf in a hearing household. You must learn how to communicate even if you do not share your family’s language. Of course, I was lucky. My family learned some Sign, making the burden of communication easier for me. Many families don’t do that, even if their deaf child only signs.
The Strange State of Being Tri-Cultural
When I was 12, we made our pilgrimage to the family’s homeland of Brazil, where my entire extended family all lived. We did the same thing every time, visited the same places, and saw the same relatives. We always went to my aunt and uncle’s house in a small farming town where drivers still used hand signals before turning. This trip was no different, except for one thing. My sister befriended a local girl.
I watched my sister and her friend splash around at the pool and a thought occurred to me. How are they talking? I wondered. I knew the friend couldn’t speak English, yet they were conversing merrily as only teenager girls can. Then it hit me. They were speaking Portuguese.
This was when I realized for the first time how different my sister and I were. My sister had grown up speaking Portuguese as a first language and was fluent. I had never learned the language. Nobody had thought to mention this difference to me.
There was no feasible way of teaching me Portuguese. My parents didn’t know Brazilian Sign Language nor did they have access to anyone who did. Sign wasn’t a good vehicle for Portuguese, either. The final blow was the concern over my English skills. Many American teachers thought that if I learned too many languages, I would master none. My English fluency was thought to be of paramount importance. So, I learned English, at least a version of it, and never Portuguese.
Not only did I never learn my parents’s mother tongue, my mere presence displaced it. Before I came along, my family was a ordinary immigrant family where they spoke Portuguese at home and English only when they had to, the home a small piece of the old country amid the new. That changed when I came along. My mother began to speak English around me so that I could learn how to lipread. My sister followed suit, quickly adapting to perfect English. My father resisted a bit more, often absent-mindedly lapsing into Portuguese, of which I understood nothing. Within a few years, English became the primary language of my household, Portuguese relegated to arguments between my parents and long-distance phone calls to faraway relatives. My existence had upended my family’s linguistic makeup. I cannot help but wonder if this has made my family more American, eroding our connection to the homeland.
This realization of how different I was from my sister — and most other first-generation Americans — drove me to claim my heritage in various bizarrely nerdy ways. I wrote research papers on Brail. I insisted on taking Spanish because it was “like” Portuguese. I read as many books from Latin American novelists that I could. Yet, I remained uncertain whether I could rightly call myself Brazilian-American as I still felt as if the term referred to people other than me.
What should I call myself, then? When I must label myself, it is not American that comes to mind. It is Deaf.
Whenever I see another Deaf person signing, I walk up to them and sign me-deaf-same. We launch into a protracted conversation that makes us forget about upcoming appointments and what we were about to do. We’re full of joy at meeting someone who shares our language and the singular experience of being Deaf. This bond transcends class, race, sexuality, creed, and nationality to bind us together. This kinship is so intense and all-encompassing that it’s hard for any other cultural identity to compete.
Although my Deaf side shines the most brightly, I’ve still managed to collect smatterings of my other cultures. A bit of Brazil has made its way into me with my (overly) laid-back and agreeable nature. My individualistic streak can be blamed on my American upbringing. I exist somewhere in this mess of cultures, none of them defining me but all of them influencing me.
My mother and I once went to a Deaf gathering in the nearby Adirondacks. This was the first time I had ever gone camping. The idea of voluntarily sleeping outside in a tent seems quaintly bizarre to us both. I rushed off to play with the other children upon arrival. My mother wandered off to talk to two elderly Deaf women.
When the phone rang, my mother got up and answered it. This act elicited horrified looks from the women. “She’s answering the hearing phone!” they exclaimed. As my mother talked on the phone, they stalked off and snubbed my mother for the rest of the weekend.
My mother had unwittingly committed a serious faux pas: not disclosing one’s hearing status up-front. This was seen as a form of subterfuge where the wolf dons the sheep’s skin.
To many Deaf people, particularly the older generations, hearing people aren’t their friends. They are oppressors. Hearing educators are the ones who declared Sign inferior to speech and banned Sign from nearly all deaf schools for nearly a century. Hearing doctors are the ones who advised hearing parents to stop their deaf child from signing in fear that sign would impair their language development. Such widespread restrictions on Sign caused mass illiteracy and under-education of the Deaf. The hearing are the ones who doggedly believe an aural life is inherently better than a silent one, a bias now called audism.
My hearing mother became one such oppressor when she signed me up to become one of the first children to receive a cochlear implant after the FDA approved it for pediatric use. Cochlear implants are electronic devices that enable limited perception of sound in deaf recipients. The introduction of this new technology sparked an outcry from the Deaf community and widespread debate about the ethics of such an operation. It was the most recent entry in a long list of hearing oppression and one of the most egregious ones.
Teachers from my deaf program asked my mother not to do it. “She’ll lose her place in the world,” they said. “Hearing people don’t understand what it’s like to be deaf. She’ll lose her people.” More than one person told her that she had no right to compromise my bodily integrity. She — especially as a hearing person — was seen as undermining my cultural identity. My mother, who had been one of the most respected parents, suddenly had all of the community’s support withdrawn.
When Deaf peoplesaw the cochlear implant processor dangling behind my ear, a look of horror came over their faces. “I can’t believe your parents did that to you,” they told me. Many recounted me horror stories of babies dying, evil doctors trying to extract money from gullible hearing parents, and facial paralysis. When I protested that these stories were blown out of proportion and that my parents didn’t get me a cochlear implant because of gullibility or prejudice, they dismissed me as a Stockholm syndrome sufferer.
My parents didn’t get me a cochlear implant to turn me hearing. They did to give me choices. As someone who couldn’t speak intelligibly even with the most powerful hearing aids, my options in the hearing world were limited. These options dwindled further when my parents found out that I also had a degenerative eye condition that would leave me blind. I have Usher syndrome, a rare genetic condition that causes hearing and vision loss. A cochlear implant isn’t a panacea for deafness. Nobody knows that better than me or my parents. What they wanted for me was to give me options and they did that.
Every time I see my parents’s love for me questioned, it brings me a special sort of pain. I know such treatment is unfair and wrongheaded, yet I understand why it happens. History has left deep scars on the collective psyche of the Deaf. Many of these scars were inflicted by people who were like my parents: hearing people. I cannot take sides in this debate because i love both sides too much.
The Undeniable Difference
If I entertained any fantasies of being adopted (or a being a long-lost princess), a look at my family would crush all of my hopes. I have the same eyes and nose as my mother. My father passed down his love of exercise to me. My sister and I looked identical at age five. I am unquestionably a part of this family.
Yet I also stand apart. Something called horizontal identity is at the heart of this gap:
Because of the transmission of identity from one generation to the next, most children share at least some traits with their parents. These are vertical identities.
Often, however, someone has an inherent or acquired trait that is foreign to his or her parents and must therefore acquire identity from a peer group. This is a horizontal identity.
— Andrew Solomon, Far from the Tree: Parenting, Children and the Search for Identity p. 2
I might have grown up in the same house as my family and share genetic material with them, but there is a part of me they will never know. They do not know what it feels like to have a me-deaf-same bond. They don’t understand what it’s like to have to gesticulate to tell your father that you’re hungry. Nor do they know what it’s like to have people flap their hands in front of you and ask, “What am I saying?” (Almost always, nothing.) Most especially, they don’t know how relaxing and serene silence can be.
This difference caused its fair share of angst, as proven by all of the whiny diary entriesI wrote as a teenager. I sometimes felt alone in my own house where nobody truly knew my language or even the everyday experiences of being deaf. Sometimes, however, this difference liberated me. It gave me no pretense of needing to do what everyone else in my family did or wanted me to do. This is how I ended up a writer instead of a professor or a lawyer, a choice my father always thought was absurd.
My family made room for me and I for them because of my difference. My family learned new languages and new ways of communication for me. I did likewise for them. Such upheavals are messy and untidy. Things often don’t feel exactly fair, neither for me nor for my family. Perhaps this inequity was what my sister objected to. We weren’t the same so we weren’t treated the same. But what can you do? The reality is that none of us are all the same and to treat them exactly the same is worse than treating them differently. The tricky thing is to treat them differently with love and understanding. My family did that. I thank them for that, even if it caused my sister pique.
Family love is often messy and bittersweet. It is especially so if you happen to be deaf in a hearing family.