Deafiquette Rule Number One

A recent encounter has prompted me to take a break from writing about El Deafo’s early days in order to introduce the topic of Deafiquette, which means how to behave when you interact with a deaf person.

I can’t speak for all deaf people, especially since I am somewhere in the middle of being a deaf person and a hearing person. I’m extremely deaf without hearing aids; moderately deaf with them; I do not sign, I read lips. Really well.

Remember, I have been reading lips for 35 years. That’s a long time. I can read lips when someone is looking straight at me, or in profile, or in three-quarter view, or in one-eighth view — you get the idea. I spy on dinner conversations between feuding lovers (no one said that I have good etiquette myself), I enjoy the curses of coaches in all their %&*$# glory. If you talk to me without making any sound (a useful tool for gossiping when the victim is in the room), I will get 99% of it right.

On the flip side, however, I cannot look away from the person who is speaking to me, even when his mouth is full of chewed up bread-and-mayonnaise-and-steak-umm. If you told me that the radio announcers were speaking French (when they were really speaking English all along), I would believe you. If you have a beard, or a moustache, then I really am in trouble. Granted, it’s not always the easiest thing to do. And granted, it is sometimes understandable that when people find out that I am deaf, they tend to overcompensate.

Which brings me to the aforementioned encounter. Several weeks ago, I met a woman, a client for a freelance job. She did not know that I was deaf, and because I quickly assessed that she would be easy to understand, I did not need to tell her so. We discussed the job, some ideas, and deadlines. Not once did I have to say “What?” or “Huh?” or “Could you repeat that?” A very easy interaction. Then, a few days ago, I met with her again. The exchange was totally different. She was speaking loudly, embarrassingly so. She was over-enunciating: C  E  E  -  C  E  E,     T H I S       L O O K S       W O N D E R F U L.  Her eyes brimmed with pity. What had happened?

She had met with other members of the committee, she said. One of them knew me well, she said. That person told her that I was deaf, she said. You are so very special, she said.  I was crushed. The real pity of it in my own eyes is that I am crushed in this manner quite often.

So, Deafiquette Rule Number One: If, upon meeting me for the first time,  you do not realize that I am deaf and that I am reading your lips, and you are talking to me like a normal human being, then, by all means, talk to me in exactly the same way when you later find out that I am deaf. Do not suddenly forget our previous encounter, when yes, you did speak to me like a normal human being, and not as if I were a complete and utter idiot. Do not shout at me. Remember that when you contort your mouth in new and exaggerated ways, it is actually harder for me to understand you, because people do not talk like they are chewing air at the same time. And above all, no eyes of pity! I am truly, truly fine. For those of you who have met me once, found out the truth, and changed nothing upon our future encounters, I salute you with the mark of True Friendship.

I Get Outfitted

The day I got outfitted with my first hearing aid was a great day indeed. The whole family came along. The audiologist handed me a little box with two cords and two ear pieces, with an on/off switch and a little knob that controlled the volume. I was thrilled to be able to hear anything again, but the real reason that day was so great was this: the audiologist also gave me a multitude of beautiful and stylish slip-covers that would encase and protect my hearing aid in absolute beauty. Not only would El Deafo have supersonic hearing, she would look sensational anytime she felt like powering up. Just like the Bermuda bags of the 1980′s and the cell phone covers of now, I could match my hearing aid’s slip-cover with whatever I was wearing that day. Granted, I was in between my bikini-bathing-suit-at-all-times phase and my wear-the-same-clothes-for-two-weeks-straight phase, but just knowing that I could coordinate my hearing-aid with my outfit was power like never before. And the best slip-cover by far was orange with little white polka dots.

I wanted to look good. Before I had to wear the hearing aid, I would stand in front of a mirror, both clothed and naked, and think to myself, “I am so good-looking. Wow. Look at that.” My belief in my total fanatabulousness was gone now, and the slip-cover remedied my self-consciousness a bit. My mother might have noticed this; we went shopping for new outfits that would match some of the slip-covers. Instead of new outfits, I found a discounted after-Easter Easter bunny, dressed in a powder blue blazer, with a little hankerchief in his pocket. The hankie was orange with little white polka dots. El Deafo’s hearing aid would match her clothes, and her toys, too. Fantabulous!

Origins, Part II

Before I came home from the hospital, I spent a few days trying to walk again. The meningitis must have wrecked my inner ear — my sense of balance was shot. When my mother helped me out of the hospital bed for the first time, I simply crumpled to the floor. I was surprised. My mother kept smiling an unnatural smile. She put red Winnie-the-Pooh slippers on my feet (another of El Deafo’s conquests), and took me to a quiet, narrow corridor. It was almost like being in church: the dark, hushed aisle, lit on one end by a window’s pale, glowing light. My mother, the Madonna, sat on a bench under the window and gently pushed me to walk. I’d try a few steps, fall, and try again. I don’t know how often we did this, but it must have been often. When I left the hospital for good, I was walking, though not well, and carrying a few of El Deafo’s spoils, to boot.

Home, finally. El Deafo finds out that her powers are strong here at home, too. My older brother, seven years older and probably not too interested in me before, has now created some magic, just for me: hidden all over the house are hundreds of paper boats that he has folded himself, each stuffed with a piece of candy. All for me! My older sister, five years older and probably not too interested in me, either, now sits in the rocking chair in my room every night until I fall asleep. I have never known such power. But that was El Deafo. Me? I may be home, but in my room with the pink-and-purple-hippos-and-elephants wallpaper and the too-big purple canopied bed, I am terrified. What if it happens all over again, but this time, I don’t get to come home?

I had been home for a week or so. No one knew that I couldn’t hear. Maybe I didn’t even know that I couldn’t hear. But one day, while I was playing, I lost track of where my mother was in the house. I had been glued to her since I got home; I couldn’t bear the thought of being apart from her again. I was running around the house, searching, desperate, my voice rising in fear. And the whole time, my mother was right behind me, saying my name, desperate, her voice rising, too. I never turned around until she caught me and held me. At last she knew.

Origins, Part I

Before I was El Deafo, I was just a regular kid. I rode on the back of my parents’ bike and sang songs. I sat in the sunshine and opened tiny bottles of perfume and smelled them. I wore a bikini bathing suit to preschool, no matter the weather. I stripped the clothes off of doll babies so that I could put them on my stuffed animals. I was having a good time.

But then I got sick. It was May, 1975. I was 4 years old. I threw up all over my parents’ tan loveseat while my mother paced around on her tiptoes and my father made phone calls. I ended up at the hospital a short distance from my house and had a spinal tap.

I was sick, all right, with bacterial meningitis. The nurses measured my head every day for two weeks to make sure that it wasn’t swelling too much. One nurse brought a wide tray of shots, all for me. She told me to pretend that they were lipsticks. I watched Yogi Bear and I watched the window, waiting for my mother’s white Volvo to drive past. My mother came every day.

I was scared, but only because I wasn’t sure when I would get to go home. Would I be forgotten? But I had visitors. My mother, all the time. My father, all the time, but I didn’t know it, because he was dressed like all the other doctors, and I wasn’t too fond of them. My brother and sister, who weren’t allowed to come into the room. I could see them out the window, waving: my sister in a yellow dress, my brother in a brown suit. They never dressed up. Neighbors came and read me books.

I was becoming El Deafo. I was losing my hearing, but I didn’t quite know it yet. I complained to my mother that all the other sick kids in the room were getting ice cream, but not me. That was my first superpower: ice cream without asking.

That superpower was followed by another: I could make every day Christmas day. My grandmother sent me a bunny rabbit in a pink dress that she had made. The bunny was wearing a floral nightgown with a matching hat, and I got my own gown and cap of the same material. My grandmother also sent a round pillow with a face on either side — one happy, one sad — because I was not speaking. A neighbor gave me a Fisher-Price house. My brother and sister gave me a stuffed Eeyore and a copy of The Meanest Squirrel I Ever Met. And they never gave me stuff. El Deafo was powerful!

After two weeks of head-measuring, shot-getting, gift-getting, and ice cream-eating, I was better. I could not walk. That was obvious. I could not hear, either, and that was not so obvious, until I went home.