12.23.13 10:45 AM ET
This Is What It Is Like To Be Deaf From Birth
In many ways, being born deaf is quite normal; in other ways, it's not.
I did a lot of "normal" things: joined the Little League (where I was one of the worst players, unrelated to my hearing or lack thereof); played house (where I told my male friend to stay home and bake cupcakes); joined a sorority in college; and talked back to my parents.
At the same time, my educational and social experiences look very different than my hearing peers. I went to a deaf program in the school district. My parents had to go to ASL classes to communicate with me. I had an ASL interpreter trailing me for my entire educational career. I became a member of a culture other than my parents': the deaf culture.
Make no mistake: my deafness was no curse. It shaped my perspective of the world, and I'm glad for it. For me, deafness opened up new worlds, rather than the other way around.
Since you're asking me to describe my life, I'll start at the beginning. Prepare yourself for a long tale.
The reality of being born deaf in the 1980s.
I was lucky. Even though I was born in the United States before mandatory infant hearing tests, my parents discovered my hearing loss early and acted accordingly. I couldn't have asked for better parents.
When I was four months old or so, my older sister was making a racket when I was sleeping. My mother told her to be quiet, and in the way that only older sisters can say, she retorted, "It doesn't matter! She can't hear." This comment spurred my mother to start testing my hearing. After an array of tests, it was confirmed that I was profoundly deaf.
At that point, my parents faced a big decision: how I would communicate and be educated. In the early 80s, oralism (an educational technique with heavy emphasis on lip-reading and speech) was quite popular. American Sign Language (ASL) was another option. ASL, however, required my parents to learn and to teach me an unfamiliar language with a different grammatical structure than English. At this time, my parents were unaware that the choice between oralism and ASL was very political.
My parents decided on ASL because I got no benefit from hearing aids whatsoever. In fact, I would regularly chew on my ear molds and throw the box (back then, hearing aids were boxes with cords and ear molds) across the room. My mom thought I would benefit more from a visual language and it'd be silly to try to teach me how to listen and speak if I couldn't hear anything. My hearing loss was so severe that I wasn't even aware that I would make noises and had to be trained not to make sounds during inappropriate times.
My parents started to go to ASL classes at night. My mom worked the system and finagled an ASL teacher for me quite early. She also got a few students from the local university ASL class to come and sign with me. (Apparently, I was a popular diversion for them.)
I was so lucky to have my parents. I'm eternally grateful for the efforts that they put into my education. As hearing parents, they had little knowledge of ASL, deaf culture and the mess that is deaf education system was. Even though my parents are immigrants, they were educated. My dad has a doctorate and my mom had a masters in their native country. They knew that deafness wasn't a death knell for my future.
A lot of prelingually deaf children aren't as lucky. Some parents may not have resources or knowledge to understand or act on their child's needs. This isn't necessarily bad parenting. Having a deaf child can pose some confusing questions without simple answers. Moreover, some children's hearing losses are discovered too late; the language delay has already done irreparable damage. (A child needs to be exposed to a language early for proper development. Any language will do: signed or spoken.) The situation has improved somewhat with mandatory hearing tests and the Internet, but can be grim sometimes.
Interestingly, many people questioned my parents' decision to teach me ASL. My maternal grandfather always insisted that I should learn how to speak, not "the hand waving thing." Neighbors would constantly ask my mother if I had been cured yet and comment on how terrible it must be to have a child like me. Advocates of oralism said that with enough effort and time, I could learn how to speak and hear. (Never mind you that I had no hearing.)
Early socialization as a deaf child
Some people assume that if you can't speak or hear, you live in a cage of silence and desolation. That's not how I remember my childhood. I remember my early years as full of excitement, friends, and adventure, nary an iron bar in sight.
At six months, my parents enrolled me in the infant deaf program in our area. There, I met my best friend, who still remains my friend to this day.
Through the program, I also befriended children of all racial, ethnic, socioeconomic and religious backgrounds. One was the son of a vice president of a multinational company. Another was a daughter of a former drug addict.
Not only did I met children of all stripes, I met and conversed with adults from a young age. My life is richer because of those friendships and experiences.
I had plenty of hearing friends as well. I would use gestures and body language to get my message across if an interpreter wasn't available. I'd teach some of my hearing friends sign language, which they picked up quickly. Even when I went to countries where I didn't know the language, I'd happily gesture and play with other kids. I ended up interacting more with the locals than my hearing sister, who stood on the sidelines because she didn't know how to speak the language.
Many assume that you need a voice and hearing to communicate. You don't. You just need two people who want to communicate, and the rest will work out.
I'm not going to lie, though. There were people who didn't want to sign or make an effort to talk to me. There were cruel kids and adults (and there still are). Cruelty in others and difficulties, however, don't make life less rich or wonderful. It made me treasure the people who try more.
The deaf culture and cochlear implant debate
If you're born deaf, the debate about cochlear implants, children and deaf cultural rights will touch your life in some way. Many (not all) people take sides. Some espouse deaf culture as the better, more natural, way of life. Others prefer the more assimilated lifestyle that the CI provides.
I was at the front lines of this debate during much of my childhood, unwillingly. As an adult, I emerged with a dim view of both sides.
In 1991, I received a CI soon after the FDA approved it for pediatric use. I embarked on a 10-year joinery of speech therapy. I got up at 6 o'clock in the morning every weekday to go to therapy before school, went to another one after school, and practiced with my parents at home. Thousands of hours went into my speech and listening skills. I don't regret those hours, but I didn't learn how to hear and speak overnight either. Hearing for prelingually deaf children is not a switch you can flip on.
Other than speech therapy, my life post-CI didn't change much. I still went to the deaf program (but transferred out a few years later because of the commute). I still used an ASL interpreter and would continue to use one throughout my educational career. I still participated in the deaf community. I never abandoned my deaf identity, not completely.
Most of my deaf friends were good about my CI. They didn't mind it, except for the fact that my speech therapy cut into play time. That being said, people in the deaf community felt free to make pointed and derisive comments about my CI. I still get these comments, even almost 24 years after my surgery. To some, I'll always be a CI-wearer and a turncoat.
The CI advocates aren't any better, if not worse.
I have very pleasant relationships with many parents of implanted children and CI users. I, however, have also been called a failure because I still use ASL and don't speak perfectly. I've also seen a mother run across a room to prevent her child from signing to another deaf child. I've been scolded for making gestures and looking too "deaf."
Ultimately, I got sick and tired of both groups trying to tell me how to live my life. The deaf culture advocates tell me I should fling away my CI and make my home within the community. The CI advocates tell me that I should give up using ASL and become fully immersed in the hearing world.
My experience in the firestorm of the culture wars has complicated my relationship with deaf and CI communities. I find myself thinking, "Not again," whenever anyone from either side tries to convince me that my choices in life are ill-advised without understanding my situation and values. I've carved out my own life, based on my own cultural philosophies, and left the debate behind (mostly).
My life is more than CIs versus deaf culture.
The psychology of being born deaf
To many, it seems tragic to imagine that someone will never be able to know what sound is like, enjoy music, or hear one's baby cry. It's because some hearing people cherish those experiences so much and want to know that others share them.
It's not a tragedy. It's my normal. My normalcy has its own poignancy and beauty to it that most hearing people will never know.
Even though I have a CI, so I hear...technically speaking. I don't, however, hear like a hearing person. My range is significantly smaller and I don't distinguish certain sounds as well (or at all). My hearing acuity falls short of a hearing person's. But I can turn off my CI and I'm deaf again.
Silence is far more peaceful and soothing for me. There's a part of me that has to brace itself every morning when I turn on the CI and face the barrage of noise of the world around me. Most of these noises aren't pleasant: dogs barking, car starting, Amidst the tumultuous world, it's nice to know that I can carve out some tranquility.
I think too many people focus on losses or the absence of something. I haven't lost anything by being born deaf, I've only gained.
Deafness has shaped my life, mostly for the better. Because of my deafness, I see the world in a different way. I'm more creative in how I communicate. I don't mind being somewhere where I don't know the language. I love meeting new people and hearing their stories.
Deafness can be inconvenient. Sometimes I wish I could hear someone yell from across the yard. Other times, I get annoyed at how people treat me. Inconvenience doesn't mean that my life is any less rich or worth living than a hearing person's.
My deafness was never a tragedy. It's just a different way of living.
: I am massively oversimplifying the educational and communication avenues available to d/deaf children. deaf education isn't actually as binary as ASL versus oralism, but this answer isn't about the full spectrum of deaf education. To maintain my sanity (and yours), I've focused on the two ends of the spectrum.
: The deaf program served the entire county, which was a pretty sprawling geographic area. It took me 1.5 hours (3 hours round trip) to get to school every day. My parents got fed up, especially since I made a lot of hearing friends who lived on the other side of town. On weekends, My parents would have to drive for a hour to get to a party. So, my parents decided to transfer me to my local school district, moving me out of the deaf program.