A World Without Sound
I live in a world without sound.
Some of what I’m about to present below is tongue-in-cheek, a little of it is soapboxing, it’s somewhat rambling, but it still presents a view of what it’s like for ME being deaf. I’ll let you sort it out.
As with anything else having to do with humans, there’s a world of variation and differences. So it is with being deaf. We’re human. We excel. We screw up. We do everything between these two extremes.
I’m one of those rare deaf, and to some aspects of deaf society one of the elite, who has absolutely no hearing whatsoever. My audiogram is nothing but the test report form with the audiologist’s signature. That’s how deaf I am. In a word, totally.
People ask me what it’s like not being able to hear. One of my answers is, “what’s it like being able to hear?”
There’s a reason for that answer: It’s not easy to explain what it’s like being able to hear. Neither is it easy to explain what it’s like not being able to hear. The two constructs, deaf and hearing, are diametrically different and if you are one it’s very difficult, if not impossible, to truly grok the other. How do you describe sound to someone who has never heard a sound in their life, or who has no memory of any sound? I fall into that last category; I’ve been deaf since I was 4 1/2 years old. I’ve never been able to remember any sound from before I became deaf.
The supreme irony, to me, is that invariably when hearing people try to explain some sound to me, it’s in reference to another sound or sound-related terminology. Some people catch that and try to correct it, others don’t and go on describing the sound using other sound effects. To be honest, sometimes it works, too, if I can make the correct internal association with some other analogue.
As with many things, it’s a matter of perception. To the hearing a deaf person has a hearing disability. To the deaf, it’s the hearing person that has the disability…he or she has to deal with all that noise, we don’t. For most of us deaf, being labeled with “hearing impaired” or “having a hearing disability” is at best undesired, at worst demeaning or insulting. The term may be politically correct, but that’s politics and not reality. We just don’t see ourselves as being disabled. We have problems interacting with the world, so in that sense it is indeed a disability. But so do hearing people have problems interacting with the world. Just like most people, we don’t see ourselves as having anything more than a problem to get over in the pursuit of what we want to do.
There’s the obvious effects…I don’t hear a car backfiring, I don’t hear people out of sight trying to get my attention. I can’t hear music, my wife, my children. I don’t hear the neighbors arguing, the people in the room next door in the hotel going at it. I don’t have the warnings in games that let you know to duck or whatever. I don’t hear the fire or police in the night. Or in the day, either. I don’t hear the white noise such as the refrigerator, fan, computers, pipes, car engines, wind, ocean, waterfalls, thunder, dragging mufflers, crying babies, phones during a movie or my granddaughter’s play, or anything at all. Good or bad. Period.
Like I said, that’s some of the obvious. What’s not so obvious?
There’s a lot to be said for being deaf, but there’s a lot of things people gain by being able to hear, too. I may think someone’s being rude to me or my wife when by the sound of their voice you can tell they’re just being neutral or are very tired. Visual clues without supporting sound can and do result in misconceptions about how people are behaving. I lipread what they’re saying but based on their body language I can get the wrong idea and come away from the encounter thinking they don’t want my business or that they’re iceholes or have no idea what service means.
The flip side is the same: I’m in turn potentially considered to be rude. It works both ways, and I know it. Unfortunately, there’s nothing I can do about it if I’m not aware it’s happening. As an example: At a cul-de-sac party I walked out of my daughter’s house and the person behind me was trying to tell me something. Since he was behind me, I obviously didn’t know he was talking to me, but he didn’t know I was deaf. He later remarked to my daughter asking if I always rudely ignore people talking to me and that’s when he found out about me being deaf. That illustrates a question I think about from time to time: how many times has this happened as I leave somewhere but there wasn’t anyone to let that person know I was deaf? Or no-one let me know that person was trying to tell me something? I try not to be rude, I try to take advantage of reflective surfaces but no matter what, some people are going to give me a rap as one of the rudest people they know.
Then there’s people that completely shut down if they find out I’m deaf. I don’t mean just then, but whenever they see me after they find out. My wife and I liked one cashier in a store so we would always try to use her lane. She was friendly, easy to lipread, and we had some good conversations. That went on for about a year with no problems. Then I happened to be looking away when she said something funny aimed at me. When I didn’t answer, my wife said, “Oh, he’s deaf” and tapped me on the shoulder. From that exact moment onwards, she refused to engage in any conversations with either of us beyond what was needed to handle our purchases. Frustrating and nothing I can do about it. That happens more often than you think. There are several stores I’ve stopped frequenting because of that: the cashier, clerk, whatever refuses to deal with me any more than they absolutely must once they find out I’m deaf. Fortunately, the majority of people, once I tell them I’m deaf, simply try harder to help me understand them. Some even ask about it later on and even share jokes with me about being deaf.
Yep, I lipread. Usually when I explain that I’m deaf and have to lipread people say some variation of “I’m sorry!” Why? They haven’t done anything wrong. They might as well be sorry I got rained on. I realize it’s politeness, but people apologizing for things that aren’t their fault irritates me. What I do appreciate, however, is the attempts to work with me.
When I walk along the beach with my family, being deaf is a communications problem. I can’t hear how loud it is, but I’m told it is loud. Ok, I grok it’s loud, but how loud is loud? This creates a problem where I think I’m talking loud enough to be heard but I’m not. So I talk so loud I’m all but yelling. That sometimes makes whomever I’m talking with think I’m mad. I’m not, I’m just trying to talk.
The opposite is true as well. In a meeting if I want to tell someone something, I’m reluctant to whisper to them. I can’t guarantee that I will be quiet enough not to disturb everyone else or have them hear what I’m saying. Yet at the same time, I can’t easily tell if I’m talking loud enough. So, I don’t participate in meetings as much as I’d like to. For that same reason, I don’t ask people near me for clarification of what’s being said.
When it comes to asking later about what was said, either because I missed it completely or because I want to be sure I got it right, it’s sometimes frustrating to me that all I get is a brief summary. They got all the details, I get a high level view. C’est la vie.
There’s another aspect to meetings that limits my participation. It’s difficult to attend a meeting with more than two other people. The reason is that while yes, I can lipread very well, it still takes me time to get acclimatized to the person talking. When I have to swivel from person to person it’s harder to retain a “memory” of everyone’s speech patterns and habits. I can switch between two people because it’s more relaxed, but the more people that are in the meeting, the more they talk from different compass points and the faster they jump in when someone stops talking. By the time I figure out the topic and what’s being said, the speaker might switch. Then there’s the self-induced whiplash from rapidly trying to see who’s talking now.
Having an interpreter present alleviates the lipreading issue in that I only have to pay attention, mostly, to one person no matter who’s speaking. That lets me get used to the interpreter and get much more of what’s going on than I could trying to locate and get used to whoever’s speaking fast enough to keep up. Not going to happen, lipreading is tiring and the more people I have to lipread, the more tiring it is.
Yet, an interpreter brings in problems, too. Specifically, lag time. It takes time for the interpreter to process what’s being said. Then there’s additional time signing and mouthing that to me, especially since I prefer English to ASL. This means that if I have a question, when I see a chance to ask it as often as not the topic has already changed. Or because of the lag time, someone else has already jumped into the silence and started speaking. I can’t hear when the person speaking stops and jump in right away. Only if there’s a long enough pause can I jump in. And when things get heated…there’s no way the interpreter can sign everyone at once. She can hear everyone, but can’t process it for me.
Another problem with any meeting or training I’m in, is that I can’t swivel my eyes independently like a lizard. While I will try and place my interpreters so that I have a simultaneous view of them and whatever’s being presented, I can really only give my attention fully to one or the other at any instant. That means that if there’s a long detailed explanation of something supported by presentation materials, I have to decide which to focus on for the most input. I can hop back and forth between the interpreter and the display, but that causes some problems. Mostly in that I can’t study the display as thoroughly as I would like. Nor can I fully get everything the interpreter is telling me.
When I travel, be it from home to work or long drives taking several hours, I have no entertainment, audible or otherwise, to keep me from being bored or keep me awake, for example. Where a hearing person might listen to the radio to help pass the time, I don’t have that option. I have to simply pay attention to my driving and use my own mind to keep me alert. I don’t have the road noise, wind noise, engine noise, radio, MP3 player…nothing. I’m sitting there driving, hoping there’s nothing wrong with my car that I’d know about if I could hear it. If there’s nothing to see, like the drive from Pendleton to the Columbia River Gorge or from Boise to Mt. Home, all I can do is think about things and try not to get so distracted by my thinking or daydreaming that I lose focus on my driving.
While on the subject of driving, if I see a drunk on the road or an accident, what can I do? The only option open for me is to text someone I know and hope they see the text in a timely manner. There’s no contact means other than voice for 911 or *DRUNK, for example. 911 is supposed to have a TTY in place, by my experience with support centers was poor enough that I doubt around here the TTY is fully manned or that the operators are familiar with it. I have seen drunks on the road weaving into the other lane and had no way to call it in. I’ve seen a fire in a field and had to wait until I got home to ask someone to call it in. Now I can pull over and text someone, but there’s no guarantee it’ll be seen and acted on quickly. An accident I’ll stop for and do what I can but if I’m the only one there, I can’t call it in.
I’m also an amateur radio operator. The majority of the ham bands available to me are useless to me. By myself I can only operate digital modes such as CW, PSK-31, etc.. That cuts me out, pretty much, of being able to use the local repeaters during my commute or when driving around locally or on trips. It also means the only way I can operate mobile is to pull over somewhere and try operating there. I can’t just drive and monitor for activity and respond if there is any. It would be nice to be able to grab the mic and answer a CQ for a nice chat during a boring drive, but I can’t. YET. I’m still looking for ways to set up my mobile operating to at least monitor traffic somehow so I know when there is real traffic that I might want to check.
I love to help out with local events, helping to provide communications services. Yet, because of what I mention above, I often feel that I’m being “allowed” to help rather than actually contributing. I know intellectually that’s not the case 90% of the time. It’s frustrating, though, having to rely on a hearing partner when I help, for example, with the rally events and am not handling APRS (Automatic Position Reporting System). Yet, at the same time I often feel as if I’m being given APRS so that I can free up a hearing ham that’s more useful somewhere else. Believe me, I know that’s rarely the case, but that’s the rationalization that takes place in my mind…in part because of jealousy. They get to go on the boats, they get to know what’s going on by hearing all the traffic, they get to man the various checkpoints, they get to control road traffic, they get to man the pace vehicles with the flashing lights…you get the idea. I’m only useful if there’s APRS running in the event unless I have a friend along.
My vehicle’s ham radio is programmed with a bunch of frequencies: emergency, ham, aircraft, whatever interests me. I enjoy driving my daily commute with the radio scanning and seeing what activity there might be. That, despite how frustrating it is. When it stops on a frequency because of traffic there, I want to know what’s going on. Since I’m alone, I have NO clue why there’s traffic on the Life Flight frequency or what interesting conversation might be going on through the Cinnabar repeater. Even when there’s someone with me, usually they don’t tell me anything unless I ask. They’re not that interested, they’re more interested in what they’re reading or the AM/FM radio or their cell phone.
One of my favorite happenings is when someone sees my car with the antennae and ham license plate then comes over to ask about something electrical or radio related. When I tell them I’m deaf…most of them recover quite nicely, but the look on their face is one of “Whaaa???” If it’s another ham, they usually figure it out. If not, the first question is often, “How do you use the radio?” The neat thing is, they’re interested.
Ironically, I have a love of music. Go figure. I can’t hear music and I can’t feel all the nuances of it either. That is extremely frustrating for me. I used to play the guitar, the autoharp, and to some very slight extent could politely be considered to have been able to play the harmonica and mountain ocarina. I love it when people find out I used to play those instruments. First, I get something very akin to the expression when strangers find out I’m an amateur radio operator. Then they get very interested and we engage in some really engaging conversations about music. Yet, in the back of my mind is a little bit of green: envy and jealousy. I truly envy people their ability to enjoy music in a way I as yet can’t: Fully and generally appreciative of so much more of the nuances than I have ever been able to enjoy. I can read music to some extent (out of practice like with my instruments) and I can feel some aspects of it, yes, but there’s so much more that I can only comprehend intellectually. I can’t enjoy music the care-free way they do. I can’t sit at my computer working and listening to music at the same time. I’ve already mentioned driving and the same applies to walking or attending my granddaughter’s concerts. I enjoy what I can, but I’m more often than not bored even while I enjoy being there and seeing them perform. On the other hand, from all everyone has told me, I happily don’t have to deal with stuff like elevator music either.
Someday I hope either myself or someone else will develop a program or app or something that will visually present music to me fully. Something that I can take to concerts in my hand and watch. I work at that sporadically and would like to sometime be able to focus on that to see what I can do with my programming skills. The hardware’s getting there, and the software, but my finances aren’t. There’s some visualizations that look like they’d be quite effective, but I either can’t afford them or can’t find out where to get them.
I scare myself. Imagine, if you can, that you are up in the high desert by yourself and that there is absolutely no sound anywhere. You can feel a light wind. There’s the barest sliver of a moon just peeking over the distant mountain range. It’s gorgeous. You’re standing by your tripod, taking pictures of the night sky and your surroundings. You focus on your camera settings, where the camera is aimed, and think about what you want to capture. You trigger the camera. And so it goes for a while as you take various pictures. You decide to stop and take a break, to go over to that bush and recycle some of that water you’ve been drinking. Out of the corner of your eye, you see…something. Or did you? You look harder, but you don’t see anything. Then you see a car drive up to another car you’d not noticed before in the gully way yonder. A long ways off, but you’re aware sound carries. Are they just teenagers or maybe other photographers out for some fun tonight? Or is it a drug deal? What was that by the bush? You strain to see in the dark, wondering how much noise you’re making.
My point with that scenario: I have no audio to correlate what I may or may not have seen, what may or may not be going on in that gully. Should I stay? Should I run? Was there really anything there by that bush?
Or another true-life experience: I’m hiking in a rocky area, keeping my eyes open. I reach up, grab an outcrop, and use it to help myself up the hill. I’m about waist high with the outcropping when I notice an opening in the rock pile three feet away from my head, at eye level. In the opening is a rattler, coiled and looking straight at me, with a blur on the other end. I know what that blur is but unfortunately got a little closer than I would have if I could have heard it. I simply carefully angle away a little and continue on my way, moving further away from the outcropping just in case there are others. This time, both of us reacted calmly to the perceived threat: the snake to me and me to the snake. But what if I’m closer next time or startle the snake? Or some other wildlife?
I have done cross country skiing. I don’t mean in the tracks, but off across the back country, making our own path over unmarked snow, following an unseen summer trail, a winter trip to visit an alpine lake. When I talk about how quiet it is there, more often than not I get an odd look and the question, “How do you know it’s quiet?” Honestly, I don’t know how I differentiate it, but I notice that it’s quieter. Maybe I do unconsciously feel something akin to that white noise that permeates hearing people’s lives. I don’t know, but I am somehow able to sit there in the wild, by myself or not talking with the friend that’s with me, and just enjoy…the silence? Maybe I should be saying it’s more peaceful, but that’s not it. It’s definitely more quiet. Yet, I don’t hear any less there than I do at home. Or even where I met up with that rattler. Funny thing…when I crossed a log all of a sudden there’s this crack that takes off from where I’d planted my pole. Fascinated, I watch it tear across the unmarked snow, arcing around and in front of me, splitting into more cracks, and racing back. Cautious, I watch the last crack stop about eight feet away. The whole thing happened in total silence, the feeling of how quiet it was never changed. It wasn’t until we made camp and were sitting around after dinner that my friend mentioned how loud the crack had been in the silence of the meadow. It’d scared him more than it did me, he’d thought it was an avalanche starting somewhere nearby.
So far, all this has mostly illustrated what I miss out on. I’m going to try and focus on the flip side now.
At work, at home, out and about, doing photography, wiring circuits, woodworking, reading, writing, whatever…I can really get lost in what I’m doing, no matter what is going on around me. Within limits, of course. I couldn’t very well stay zoned out doing woodworking in my garage with the ambulance or fire truck across the street. I’d notice the flashing lights. Stuff like that aside, I have no problems concentrating on what I’m doing. I am able to give it my total attention, uninterrupted by people nearby, kids playing, the neighbor banging on his car, whatever noises there are. I can work in environments that would be too distracting or too loud for hearing people. I can also sleep just about anywhere. I can paddle my canoe in a near meditative state that lets me paddle all day while enjoying the scenery and the paddling. I can kick back and read a book, immersing myself in it fully wherever I may be reading. If I can get to sleep, nothing’s going to interrupt my beauty sleep if it’s noise based, no matter how loud.
I can watch a movie in peace, no-one’s going to be calling me on the phone. Even if they do, I don’t do phone calls. At work, I ignore my phone, letting it go to voicemail if I get a call. Anyone that calls me and knows me knows that’s going to happen, anyone else…the voicemail message will tell them. I get to focus on my work completely unless someone stops by to talk.
When I’m doing something, it doesn’t matter to me if someone else is playing their music loudly, if someone’s listening to lousy music loudly, if there’s a rush of traffic outside the house, or an emergency vehicle going by. The kids can play as loudly as they want, it’s not going to bother me. I can peacefully enjoy my movie, book, food, sleep, whatever.
I only have three distractions in these circumstances: a visible change in the environment, a physical change in the environment, and myself.
One aspect of being deaf that’s at once hilarious and frustrating is that my lipreading isn’t perfect., especially when I’m tired. I will have people that I can lipread perfectly say something and I will get it totally wrong. I get the majority of what they said, but one or two critical words can really screw things up. For example, my wife once said, “Barney Clark died this morning”. I looked at her and said, “Damn it, I wanted to ask him something”. She spent the whole day discussing that with her friends at work, wondering how I knew Barney Clark, the first artificial heart transplant patient, and what the heck I wanted to talk to him about. When she picked me up after work, she asked, “Why did you want to talk to Barney Clark?” I said, “Who is Barney Clark?” When we got everything sorted out, it turned out I thought she said “Marty called this morning.”
On the other hand, it’s fun being able to lipread people in the car ahead of me via their mirrors or across the intersection at a stop light. For example, I once watched a young couple across the intersection, obviously very conscious of their “public” presence. Dressed up as if to go to a fancy party, they were arguing rather heatedly about the brother of one of them, using language that wouldn’t be appropriate at the party they were headed for (guessing by their being dressed up). Throughout it all they were smiling as if to hide the argument from people that could see but not hear them, though once or twice it was more like a grimace, but the things they were saying…oh, boy.
People regularly ask me if I want to get my hearing back. Would I get a cochlear implant? How about the new microsurgery where they connect wires to the nerves? My answer each and every time is “no”. I do not want my hearing at all. I’m so used to being completely and totally deaf that I think the sheer volume of noise would drive me nuts. I would love to hear the twins giggling as they play, hear my granddaughters singing, hear my daughter and son’s voices, and listen to my wife’s voice. As I once wrote in a published article, I want to hear the stories a creek has to tell, the song of a waterfall, the stories of far off lands told by the wind to the trees, hear the rain falling on a Japanese garden, listen to Wagner’s whole Ring cycle. If I could hear even a little of all that and remember it, I would be content.