Growing up deaf
I posted a short piece the other day that shared something of what it was like to grow up deaf. The piece was impressionistic and intentionally obscure, with the hope that the reader would find in its spare uncertainty and vivid imagery something of the experience of having a sense impaired.
The piece had an unintended consequence: several people who read it chastised me for offering an incomplete and unhelpful picture of a difficult experience. The assumption, given that I primarily write fiction and often share sketches of different characters, was that I had imagined it.
I wondered where these readers had come from. This was the first time that I had gotten such personal, negative feedback to a sketch. Checking the log files, I discovered something sobering: When you type “how hard it is to grow up deaf” into Google, my post When you grow up deaf was the first page returned by the search engine.
Someone typing in that search string probably isn’t looking for literary-minded prose poems. They are looking, I imagine, for tangible information that can help to allay the confusion and fear of raising a child who can not hear. My piece, as vivid as it is, would only intensify the searcher’s sense of what it is like inside their child’s silent world, and increase the feeling of helplessness that afflicts the parents of impaired children.
I wasn’t imaging when I wrote those lines. I know.
I grew up deaf.
I wasn’t profoundly deaf. Just like sight or mental functioning, there are degrees of hearing loss, and while the most profound loss most easily defines the condition, the experience of growing up with a high degree of impairment of one of your critical faculties is challenging and confusing.
I have one word of guidance to parents of an impaired child.
Let the child lead the way.
I did not get hearing aids until I was 18 years old and going off to college. I grew up in a big family of meager circumstance, and even with 80% loss of hearing, I didn’t qualify as the most handicapped one of the group. One of my sisters is profoundly retarded. She didn’t learn to walk until she was six, she needed constant supervision and she combined the mental faculties of a two-year old with the hormonal momentum of an emerging adult.
What was it like to grow up without being able to hear? When you are given the space to become part of the group, to hang out with kids in the neighborhood, to make your way through school, to create the identity that you want, you find ways to adapt and conform.
You watch the world closely. You mimic what you can. You gravitate to close relationships. You have to dominate a group conversation because you can’t follow the fast back and forth. Some kids think you’re weird. Some kids get it and try to watch out for you. You read. You work with your hands. You feel on the outside. When you run track you have to compensate for starting a split second after everyone else because you don’t know whether the gun went off or not.
You sit in the hearing booth and listen for the bloops and beeps and hums of the testing tones and wonder whether you’re getting better. You drive through a neighborhood with a Caution Deaf Child road sign and worry that you’ll have that put up on your street and be branded as an outcast.
What can you do when you are this parent’s child? My mother had the philosophy of maximum information and minimum intervention. When I started a new year at school, she would go talk to all my teachers and tell them that I had bad hearing. She would encourage me to sit in the front of the class. She’d ask the teachers to make sure that I got each day’s assignment.
Then she would get out of the way.
I would go sit in the back of the class. That’s where my friends sat. I’d start missing homework and doing poorly on tests. She would go talk to the teacher. And the next day, I’d discover I’d been moved up to the front.
Her instinct was to let me learn myself what I needed to do to adapt. She knew that I was going to make mistakes.
When I acted out or got caught doing something stupid, she didn’t brand me as a bad kid. She intuitively knew that I was out of sync and always trying to catch up. Sometimes I did stupid things and I deserved to get punished. It was nothing more than that.
There were a few times when she intervened quickly and demanded resources and attention for me. In second grade, I was so unresponsive to verbal cues that they determined that I was mentally handicapped and moved me out of my classroom into a remedial group. My mother marched into school and excoriated them: he’s smart, he’s just deaf! She demanded speech therapy to alleviate my lisp, she insisted that the teacher in my second grade classroom take the time that I knew what work there was to do, and she watched them like a hawk to make sure they delivered on their promise.
The second time she intervened was when I went to college. She worked with the state rehabilitation arm in Rhode Island to get me free hearing aids. She also convinced them to give me a scholarship to go study in New York. Her reasoning was simple: you’ve been able to get through life so far because you were able to create small situations for your interactions; when you go to college, you’re going to be in large groups that are out of your control, so you need to have better tools.
The day I got the hearing aids was the day that I realized what you didn’t know when you grew up deaf. The doctor crumpled a sheet of paper in his hands and my head throbbed. The phone rang and I jumped out of the seat. My clothing made swishing noises when it brushed together. For the next part of my life, I learned what it meant to be a hearing person. I discovered what my talents were. I went through an education in relating to others. And I moved into life with my handicap ameliorated by micro-circuitry and plastic cases that I put into my ears each morning and took out each night. It was…and still is…a miracle.
But you never stop being deaf, even when you have the tools to help you offset it. When I take out my hearing aids, I drift into a world of silence. It is a familiar and comforting world, where I am not hyper-alert and vigilant. It is the world that I know from when I was a child.
This is a vivid memory. I was standing with my bike on the country road we lived on. I’m with a couple of other kids from the neighborhood. We’re planning where we are going to go. I’m watching their lips, picking up a word here and there, and piecing it all together. We climb onto our bikes, about to head off. In that moment when your bike is still and you are balanced on the pedal starting to push off, I looked up at the trees. They were green and full. They were waving around wildly. I saw the motion, felt the sensation and heard nothing.
My mother gave me the space to find myself and stayed present so she could make sure the world gave me that space back. She didn’t try to protect me. She let me take the flute and play in the school band — badly — without telling me that it was folly. She let me go ride my bike on the busy town road, but only after having my friends swear they would ride in front and behind me. She let me sit close to the television so I could hear the dialogue without telling me that I was going to go blind.
Still, she was the mother of a child who was missing great patches of experience. She was the mother of a mentally-retarded child. She looked at these misfortunes and asked herself, What have I done wrong?
What I wish I could have told her then is that we were all right. And that when she saw me sitting in mute and still, reading for hours or staring out the window, or tinkering with an old radio, that I was inside the richest and most magnificent place that I could possibly experience, my imagination. Her choice to give me as much of life as I could handle may have been painful to witness, but it was a profound gift and an act of courage.