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 guess, there were many. One such crime was that our parents paid more attention to me.
As I read this complaint, one that nearly all big siblings seem to share, I wondered if it was true. “If it’s true, it’s because my family is so good,” I thought, feeling a strange mix of guilt and gratitude.
The years since that moment have only cemented what I knew at 11: my parents responded to my deafness with a rare kind of grace, aplomb, and love. I cannot imagine a better hearing family to be born into. This sort of idyllic family life–if there is such a thing–gives rise to its own complications.
One of my most persistent memories is watching my mother talking on the phone, her lips moving in mysterious and incomprehensible ways. I wouldn’t bother trying to lipread–it was an impossibility under such circumstances where I didn’t have the faintest idea of the context. I’d just wonder what she was saying, whom she was talking to, and what they were talking about. When my mother got off, I’d pepper her with questions, which she gamely answered (usually). My father, already averse to phone conversations, wasn’t as forthcoming. My sister simply viewed my questions as an extra dose of my irritating little sister-ness. (Yes, I was a very, very annoying little sister!)
Soon after my diagnosis of profound deafness at 4 months, it became clear that the profundity of my hearing loss made any oral training impossible (this was before the commercial availability of pediatric cochlear implants). I learned Sign, the most accessible and natural way for me to communicate.1 Even though it appalls me to use the word lucky in this context, but I was indeed lucky that my family–to varying degrees–learned Sign for me. More families than you’d expect don’t learn Sign even if their child uses it.
Even if a hearing family learns Sign, it’s not like living in a house of fluent signers. Despite the inadequacies, I still flourished.
My father often boasted that he surpassed my mother–who had dexterity issues–in the first few months of classes, but the reality was that he stagnated as my mother improved. He never graduated past the lexicon of a toddler: “lights off” “Coat, cold” “bathroom now” and the like. He couldn’t express anything more abstract than the banalities of everyday chores.
His inability to move beyond the rudimentariness of Sign wasn’t surprising. Not only was he older and set in his ways (being 45 and famously inflexible), but he also possessed no gift for language. Mediocre in his native Portuguese, he wrote (and spoke) stiffly and haltingly in English even after spending 40-plus years in the United States. Sign–or any language other than math, for that matter–wasn’t his thing. Laconic to the extreme, his communication revolved around concrete and immediate needs. He spoke far more eloquently through his actions and I was just fine with that.
My sister learned far more quickly than my father, becoming an exceptional finger-speller. Her fingers moved so fast that they were readable only by an expert eye (usually Deaf). But she never learned more than a few signs, preferring to finger-spell everything with her lightning-quick speed. Her reliance on finger-spelling resulted in a more cumbersome form of communication than Sign–which is far, far more efficient–but that was what she liked. I accepted and accommodated her, our conversations always slightly askew as she finger-spelled and I signed (making sure to use the ones she knew).
Out of everyone, my mother showed the most aptitude for Sign once she overcame her dexterity issues. She threw herself into learning Sign with her characteristic verve and sense of whimsy, eventually becoming good enough that she would often interpret for me when the need arose. As good as she was, she never mastered Sign to the fullest extent, struggling with some aspects of vocabulary and grammar.
Even though everyone in my immediate family knew some Sign, it wasn’t a signing household. If my sister, my mother, or my father conversed, they spoke. Signing was meant for conversations with me, not as a general language. I didn’t–and still don’t–feel resentment toward this asymmetry, but many other Deaf people do. I can’t blame them, as it’s a harsh reality of being a linguistic minority in your own home.
The other asymmetry was the disparity between my signing form and my family’s. Due to the trends in deaf education system during the 1980s, my family learned Signed Essential English (SEE), a manually-coded sign system rather than American Sign Language (ASL), an organic and natural language in its own right. While maintaining the English syntax and grammar, SEE requires the signer to divide up words into distinct morphemes–a structural unit of a language–which is famously lumbering and unwieldy.2 An example is: (I) (am) (go)(ing) (to) (the) (store) which is a stiff and artificial way to express oneself in Sign. At this time, SEE was taught based on two assumptions: it would easier for hearing families to learn and it would improve deaf children’s literacy. The former seems plausible with the latter being more dubious.3
After initially learning SEE from the various teachers who flitted in and out of my family’s home, I began picking up ASL from the local Deaf adults. This evolution was natural, as ASL’s unique spatial grammar and syntax created a far more efficient and seamless signing experience. After all, ASL, unlike SEE, embraces the visual-spatial nature of Sign. My gravitation toward ASL meant that I used a different–more natural and sophisticated–language outside the home and had to convert back to the stiffer, more cumbersome SEE at home.
Linguistic asymmetries are a part of life as a deaf person in a hearing family. This means that I didn’t grow up in a perfectly accessible, linguistically rich environment. This, ironically enough, taught me how to communicate better as I had to work at it every day.
When I was thirteen, my family made our pilgrimage to my parents’s home country of Brazil, where virtually all of my extended family still resides. As usual, we visited my aunt and uncle’s home in a small town several hours northwest of the teeming metropolis of São Paulo. Only one thing was different this time: my sister had found a local friend.
As I watched my sister and her friend laughing and horsing around at the town pool, I wondered idly how they were talking if the friend didn’t speak English. I realized that my sister’s friend didn’t know English. They were speaking Portuguese.
That was the first time it struck me that I was so very different from my hearing sister. She knew my family’s language. I didn’t.
Not only was it linguistic overload for my mother to teach me Portuguese on top of Sign and English (she says she tried), but my presence also effectively eradicated Portuguese from the household. Since experts, mostly of the oral persuasion, encouraged my mother to speak English around me so I could learn how to lipread, so the primary language of my home switched from Portuguese to English.
It remains a disconcerting thought that I upended my family’s linguistic makeup in yet another way. Because of me, English replaced Portuguese as the main language of our household. I can’t help but wonder if that shift made us less Brazilian and more American.
I tried to claim my heritage in other–far nerdier–ways. I wrote papers on the Brazilian economy in high school. I read all of the Latin American books I could get my hands on (which consisted mostly of novels authored by Gabriel García Marquez and Isabel Allende, who weren’t even Brazilian). Religious and and cultural history became subjects of two major research papers in college. I also learned some Spanish and Portuguese, but I never felt Brazilian. Why would I? I felt more like a clueless tourist there than a long-lost daughter.
The first word that pops into my mind to describe my group identity isn’t Brazilian-American or even American. It’s Deaf.
Whenever I see another Deaf person signing, I walk up to them and sign Me-Deaf-Same. I don’t do that with Americans or Brazilians. Beyond a shared language, deafness links people through the share experience of being “different” in the same way. I don’t have that sense of kinship with any other group even if we share some superficial commonalities.
Deafness has such a deep (and largely positive) impact on my life that it has overshadowed my other group identities.
When I was young, my mother and I went to a Deaf gathering in the nearby Adirondacks. It was the first time I had ever gone camping as my family–especially my father–found the notion of voluntarily sleeping outside in a tent quaintly bizarre. As I barreled ahead and played with the other children present, my mother chatted with 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 before stalking off. They 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.
To many Deaf, particularly the older generations, hearing people aren’t their friends. They are oppressors. Hearing educators were the ones who declared Sign inferior to speech and banned it from the majority of schools in the United States. Hearing doctors are the ones who advised hearing parents to stop their deaf child from signing in fear that sign would impair their speech and language development, causing 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. Hearing people could be allies, but they could also be oppressors.
In some Deaf people’s eyes, my hearing mother became an oppressor in 1991 when she signed me up to become one of the first few hundred children to receive a cochlear implant after the FDA approved it for pediatric use. Cochlear implants are bionic ears that enable limited perception of hearing in most recipients. The introduction to this new technology sparked an outcry from the Deaf community and widespread debate about the ethics of such an operation.
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 impinging on my cultural autonomy. My mother, who had been one of the most respected parents, suddenly had all of the community’s support withdrawn from her.
To this day, it pains me to see my mother vilified so. My mother was the one who encouraged me to sign and socialize with other Deaf people. My parents never once made me feel bad or lesser because of the fact that I couldn’t hear. They, unlike so many other parents, accepted me for who I was.
My family’s decision to get me a cochlear implant wasn’t as simple as the assumption that my parents wanted me to be hearing and thought life could only be worth living if one hears running water. (Now that I can “hear” running water, I don’t understand the fuss.) I had recently been diagnosed with Usher syndrome, which meant that I would be going blind. On top of that, I had no family in the country other than our small nuclear unit. She simply wanted me to have choices.
The fraught relationship between the hearing and the Deaf means that I’m stuck in the middle. I love my family and I hate to see their love for me questioned. Yet, I do understand why it happens. History has left deep scars on the collective psyche of the Deaf community.
If I ever harbored any fantasies of having been adopted, a single look at my parents would crush such hopes. My mother and I have the same nose and eyes. My father instilled a drive for academic achievement and a love for fitness. (He demanded highest levels of fitness for the mind and the body.) My sister and I even have similar handwriting. I am unquestionably a part of my family.
Yet I am also unquestionably different, as Andrew Solomon aptly describes:
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.
– Solomon, Andrew, Far from the Tree: Parenting, Children and the Search for Identity p. 2
The truth is that even though I grew up in the same house as my sister, share my genes with my parents, they don’t fully know what it is like to live life as a deaf person. They don’t know what it’s like to have an interpreter bungle a presentation or what it’s like to have someone flap their hands in front of you and say “I’m signing! What did I say?” (Nothing, by the way.) They also don’t know what it’s like to feel a deep sense of kinship when you happen across someone who is Deaf and spend hours talking to them, even though you two are different in almost every other respect. They simply don’t know. Most children feel a sense of difference, but I felt it deeply and starkly.
There are times when this difference is alienating and lonely. It makes you feel alone in your own home that nobody shares your language or even history. There are also times when it’s refreshing to realize that I am my own person and not required to conform to a preset identity. I am simply myself.
My difference put my family in the position of accommodating me (even though I did my fair amount of accommodating as well), which most likely motivated my sister’s angsty declaration that I received more attention. My family did it out of generosity and love. For that, I am eternally grateful, but there is also a pang of guilt at upending their lives in such fundamental ways. Bittersweet, indeed.
So, yeah. It’s complicated.
…deaf children exposed only to signed English replace its grammatical devices with purely spatial ones “similar to those found in ASL or other natural signed languages.”
– Sacks, Oliver Seeing Voices p. 89
This shows how clunky and unwieldy SEE is. It is simply not an organic language and ill-suited to signing. For more on the difference between SEE and ASL, I recommend reading Seeing Voices and Talking Hands.
I just happened to be born in the mid-1980s during the height of the Total Communications era and the height of Sign awareness. The pure-oral movement had declined only a decade earlier due to the confluence of factors, the most important being that studies showed that deaf children of Deaf parents (therefore native signers) outperformed their orally-trained deaf peers in academics. See e.g. ” The History of Language Use in Deaf Education” and ”Language and Communication in deaf Education.” It was one of the few times where Sign was encouraged in deaf education, albeit in the modified form of manually-coded sign systems. Use of Sign in deaf education would wane once again in the 1990s as technological advances in digital hearing aids and cochlear implants turned more parents back to the oralism method. Id.↩
There is some issue regarding the comprehension and usefulness of the manually-coded English, as shown in the study quoted here:↩
There are numerous conflicting studies on the hypothesis that teaching children in a manually-coded sign system improves literacy. Some say yes. Others say no. I say … inconclusive.↩