Somewhat Silent

How much of me is my deafness? I dance with this question throughout every moment of my life. How much of me does my deafness determine? How much of me does it control? How interwined are its fingers with the path of my destiny and how much of my future does it manipulate?

When I was a child and had first lost my hearing, I refused to allow people to call me “deaf”. “I’m hard of hearing!” I’d say. Because to me, “deaf” implied a total devoid of sound, and I could still hear sounds. Whispering murmuring twittering ghostly sounds. All of the detail and none of the content.

I was also terrified of being labeled “deaf”, because I had heard the story of Helen Keller. “How horrible.” I thought. Not that she was deaf and blind, but that she was known for being deaf and blind above all else. Anything she accomplished in her life was “despite” her afflictions.

I thought being “hard of hearing” would prevent me from carrying that label and that obnoxious annoying uppity sense of pity that accompanies every introduction. “This is Sara, she is deaf.” “Oh, poor little girl.”

Truth be told, I wanted to sink my teeth into their ankles whenever that happened. Whenever I was introduced that way. Whenever people made excuses for me, or mentioned the deafness in-step with any accomplishment that I had achieved.

“Sara won a writing award. She is deaf.”

So I’d snap at anyone that used the “d” word.

I wanted to achieve MY destiny, I wanted to own MY accomplishments. I didn’t want to be a Marlee Matlin the talented deaf woman. I didn’t want to be that Heather chick, the deaf Miss America.

Then I realized that my hearing loss was shaping my destiny, no matter what word I used for it.

“I want to be a veterinarian.” you can’t, you need to be able to hear through a stethescope. You’d never forgive yourself if an animal died because you couldn’t hear a symptom.

“I want to be a lawyer.” you can’t, you need to be able to hear in court.

“I want to be a teacher.” oh, that’s nice. You’d need to learn sign language before you teach in a deaf school. (who said anything about a deaf school?)

My hearing loss was shaping my destiny because I didn’t want to fight against the morons that were slapping labels onto me and saying all the can’ts and won’ts. And I had this nagging suspicion that the “hard of hearing” label wasn’t helping as much as I thought it might.

Truth be told, I had very little language comprehension by ear alone. Ok, that’s a lie. I had zero language comprehension by ear alone. 0% word recognition. Practically speaking, how “hard of hearing” does that sound to you? Practically speaking, screw all the things I could hear. To Joe and Jane average, I was stone cold deaf no matter what label I was using.

I realized then that I have a choice. I can be that deaf girl or I can be that hard of hearing girl. Or I can be me, and not give a damn what labels are bandied about.

“How much of me” is my deafness? I don’t know. How much of me is my right-handedness? How much of me is my tallness? It’s not something that I can extract at this point. All I can say is that it’s not my primary feature, it’s one of many that bands together and controls my identity. And what I call it matters little more than what I call myself. What’s in a name, afterall? Just a few brief first impressions that every interaction with me will either confirm or deny.

And in this world, I’ll always be that girl Sara with the ear-problem who also does all sorts of stuff. Heck, what do I care? I’m Sara o’ the Ears of Dysfunction. And as long as you don’t try to limit me, I don’t give a damn what of a million names you assign to my ‘condition’.

Would you rather be blind or deaf? This is a question people ask on a regular basis. Surprisingly, they even ask me.

“Would you rather be blind or deaf?” They’ll say. Or they’ll say “I’d rather be deaf than blind”. (Funny that no one’s ever said the reverse to me. I wonder if anyone says “I’d rather be deaf” to the blind girl.)

It’s a question that interests me, and that I’d most likely ask. But it’s really quite a silly question. Mostly because those that ask it have no idea of what it is to be “deaf” or “blind”. They don’t know the changes that one must go through, and the habits one must break or learn. They don’t know that it changes not only “sight” and “sound”, but how you interact with humanity and your environment.

Would you rather be deaf of blind? Me- gimme deaf any day. But only because I’ve already done it. I’ve lived it. I am it. I have all the coping mechanisms in place, I’m at terms with it, it’s something that bothers me little if at all.

But if I were to choose, having been neither, which path to take at this point in my life? What would I say? Would I give up the music? Would I give up the rainbows and the sight of grass waving in the wind under blue skies? Symphonies or paintings? The sight of a waterfall, or the sound of it?

Would we be talking about full deafness, or more moderate deafness such as the hearing loss I proudly call my own? Would we be talking full blindness, or partial blindness? Which shade of gray?

There are implications that accompany the “loss”, you see. You cannot walk into a movie theater and be guaranteed that you’ll understand what is going on. So you’ll avoid them, and people go to an awful lot of movies, so you’ll be confronted with the “movie question” on a regular basis. You cannot just attend a lecture or class. You need to first find an interpreter and jump through hoops. And there aren’t a whole lot of interpreters out there–so chances are you won’t find one, or you’ll pay $500/hour. You cannot just jump in and out of small talk conversation with the greatest of ease. “Small talk” becomes a series of calculations and guessing games and learning experiences that make it very hard to concentrate on what to say next. “I’d learn a script”, you’re probably thinking. But it’s not that easy, because when you lipread your mind has no room for a script. When you lipread, your mind has no room for your name, your age, or anything else memorised. It’s fully contorted in looking up endless series of things an endless database.

There are implications that accompany blindness, too. Although I cannot even imagine them, having never been blind.

So to say “I’ll take this set of implications over that one”, with absolutely no perception of what you’re taking on.. It’s absurd. You cannot know how much you’d miss a particular sound or sight. You cannot know the delight you’d experience upon having it return. You can only know that you have a preference for a certain thing. But how do you know, that upon yielding one sense or another, you wouldn’t discover that you’d chosen in error and wished it reversed?

Life is a series of unknowns.

But I don’t say that. I say “deaf, of course”. And all around me nod in satisfaction with my answer.

What would they do had I said “blind, but I was never offered that choice by God.”?

Julie’s recent comments have reminded me of my days as a single gal. They were full of fun, tomfoolery, loose morals, and general joy.

They were also rife with misunderstandings, miscommunications, misguided good intentions, and the constant wish that I would NEVER have to go through the same old dance of meeting yet another hearing person and having to educate them about my hearing loss.

Somehow it was more annoying with the whole “dating” thing than it ever was with the whole “friendship” thing.

At one point I actually sat down to pen a “How to Date a deaf Chick” handbook. I’ve long since lost the manuscript. But honestly, the whole feeling of “Ok, now let’s do it again…” thing still exists, although with a lesser degree, in the dances of friendship and acquaintanceship and casual-drunken-conversations-at-parties-ship.

So. I’ve decided to ressurect the spirit of the now defunct (and disappeared) “How to Date a deaf Chick” handbook.

Only now I shall call it “The Nearly (But not Quite) Comprehensive Guide and Handbook to the Care and Feeding of Your d/Deaf Friend, Date, or Family Member” (…TM)”

Whatcha think? It has a ring to it, doesn’t it?

I’m taking submissions, questions, and general suggestions. The finished work will be published here for all to enjoy, poke fun of, and copy with glee.

In college, I took a political science class - probably one of the best academic courses I ever had, being in design school and all. Our professor was an extremely sharp, intelligent older woman - I very much admired her and paid close attention to her thought-provoking lectures on everything from Affirmative Action to the effects of a capitalistic society on a global scale. This was definitely one of those classes where you found yourself going “Huh!” with enlightment many times in the span of an hour.

One day, my professor approached the topic of how our society is divvied up into five distinct classifications: race, religion, gender, sexual orientation, and class. Each and every one of these groups are widely recognized and determines your status/placement in society. As she went on in detail, I found my mind drifting and feeling slightly off - as when you hear something that you don’t quite agree with but you’re searching for the reason.

My hand shot up…

“Yes, Julie?”

“Well, I think there’s a sixth classification that should be mentioned.”

“And what would that be?”

“Shouldn’t people with disabilities be recognized as a classification, since it impacts our lives in society as much as race or religion, etc?”

And I rambled for a little bit on how I felt that disabled people don’t get the respect/recognition that they deserve as a class, and we are treated as the “pink elephants” of the country, so on and so forth.

Well, when I said that, 30 students rubber-necked and stared at me - my whole body flushed with the uncomfortable sensation of 30 pairs of eyes on me. I’m sure they were staring at my hearing equipment and remembering that I indeed have a “disability.” My sense of righteousness was quickly ebbing away into embarrassment. I said no more.

My professor was now thoughtfully looking at me and probably reflecting on what I had so hastily pointed out. She then spoke loudly to the class:

“Would FDR have been elected for president if the country had seen him in a wheelchair?”

I still remember that question to this day.

And the answers.

Nigel (hohprof) mentioned that he feels music as a physical sensation.

hohprof: Somehow music has become more enveloping, more of a totally physical experience.

It got me thinking about how my brain stores away my memories. It files the things I read under “things heard”–the things I read closed captioned, books, magazines, websites, IM conversations.. They’re filed under “audiotory memories”, but yet- the things I actually hear, they’re filed under “visual” or “tactile”. Music memories are written lyrics, with the bass memory in my chest and just behind my earlobes, with the treble and mid-tones tickling down inside my arms–in the bone and the muscle.

And to this very day, my brain insists that the first memories I have of sound with hearing aids, are physical–the hearing aids I tried as a young child after losing my hearing–I remember the bird song attacking me like grackles and clawing at my ears terrifying me to the point where I refused hearing aids until my 20th year. Then, with my first hearing aids as I walked outside, hundred-mile an hour winds buffetted my body, car horns punched violently inside my head to the point of actually physically throwing my head around. Rain touched me even as I was dry under the eaves, it pattered against my arms and trickled down, tickling between my fingers. And as the first snow crunched under my feet, it felt like styrofoam between my teeth as I heard it for the very first time.

Senses, when complete, act like walls against eachother–there is little sensory leak. When diminished, the senses meld- and like smell and taste become interchangeable.