Roger Ebert’s post, visit this “trying to get a word in edgewise,” shares a letter from a man who (like Ebert) is unable to speak. Now, I can speak – albeit with mispronunciations I can’t hear and a nasal quality that makes me sound “deaf” – but some of the things the two men share resonated with me from my experience of not being able to hear. I’ve subbed in words on hearing for words on speech in the quotes below.
My mind was racing, I knew the answers to questions and wanted to share but it became so frustrating that I later had a mini breakdown… I want to contribute to life, I want to join the national discussion of various issues…
This is why I felt text chat to be such an opening and a freedom, and why I love spending my time spinning ninja-like through conversations on IRC that leave my colleagues stunned and unable to keep up. It’s the only place I can participate fully – possibly even more fully – than my hearing counterparts.
I especially know about having the answer and not being able to express it, and how the flow of a meeting gets away from you while you’re desperately trying to write, or type, or signal what you want to say. I know how people respond as if they’re being sensitive and polite, but unconsciously they’ve started to think of you as a little slow… We’re fortunate that we’re writers and can express ourselves that way, but in a meeting or a group conversation we’re always going to be six doughnuts short of a dozen. We want to contribute and people want us to, but it just doesn’t work.
After a day of visiting RIT, where the National Technical Institute for the Deaf is located, Greg DeKoenigsberg asked me why I kept on fighting so hard to make my way through a hearing world if there were places like this that would accommodate – light-switch doorbells, high percentage of signers, interpreters on demand, a campus culture where people assumed you had to lipread. I told him “look, you’re an open source guy, Greg… would you rather use a nicely-designed, polished system that locks you into a small corner of the world made just for you, where you’re dependent on other people – or would you rather have something rough, imperfect, that you can take anywhere you want, work with anyone you want, with the power – and the responsibility – to hack it to make it work for you, even if it doesn’t work great?” He was silent.
Signing doesn’t work at meetings unless you want to say things like yes, no, so-so, or shrug your shoulders — things everybody understands. True sign language is an elegant and complete medium and I have learned much about it, but one thing I’ve learned is that most people don’t understand it and never will.
…meanwhile, everyone else in the group is smiling politely. If even one of them tries get in a few quick words, the conversation moves on and the moment is lost.
Side conversations. I very, very rarely overhear side conversations. Another reason IRC was a blessing for me was that – suddenly – the little social things, the tiny glues that make teammates grow closer together, that I’d missed – were suddenly right there, and I discovered that I wasn’t antisocial and people didn’t like me, I just couldn’t hear. These are the things that people don’t think are important (and they don’t!) so they don’t explain or transcribe for you. “Oh, not a big deal,” they say. “Not really relevant. Bill’s just talking about his son’s soccer game.” Except that later on, your coworker says “Hi, Bill – how did Timmy’s game go?” and Bill goes aha, friendly person! and they grow closer, whereas you can only say “Hi, Bill!” and Bill goes well, I guess they must not be very socially aware or interested – in his subconscious, but still; it’s a subtle circling-of-the-wagons that leaves you out.
Here’s the point I’m at now. I find that I can weather about an hour of a business meeting before the bottled up thoughts threaten to make my head explode. It’s so hard for me to express myself that I’ve become aware of the words ordinary people waste. It used to drive Gene Siskel crazy when people would call him on the phone and tell him where they were calling from and that they’d tried earlier or meant to call yesterday, and ask him how the weather was. “Lip Flap,” he called it. “What is the message?” he would interrupt. Patrick, I’m sure you’ve envied those with the luxury of indulging in Lip Flap. It helps make social situations easier — if you can [hear].
I’m fortunate that my introversion ties in well with my hearing. By “introversion,” I mean “I may enjoy the company of people, but it tires me – I recharge by being alone” – not “I don’t like people ever” – extroverts are the opposite, they energize with people and get tired if alone, even if they may enjoy solitude. If I was extroverted, I’m not sure what I would do – I’d want to join these conversations and parties more, I think, and not being able to would drive me nuts. But as it is, I prefer small groups, quiet places – the kinds of places where it’s easier for me to hear and lipread, so that works. I don’t know how much my hearing and my introversion have shaped each other. It’s possible that if I’d grown up hearing, I would be more of an extrovert – but I lost my hearing at age 2, before I can remember being chattery and social – so I was just never actually chattery and social.
At dinner parties or social gatherings, I deliberately dial down and just enjoy the company and conversation. I’ve given up trying to participate very much. People mean well, but it just doesn’t work for me. If you can’t [hear], I think that’s pretty much what you tend to do. You keep yourself company. I don’t feel especially lonely. I feel lonelier at a party, when I’m sitting to one side. I like our family and close friends because they’re used to me. But I’m never going to [hear well], and I may as well make the best of it.
I’ve gotten used to this. I’m not angry. I’m quietly frustrated, but I’ve accepted that frustration and I continue to try to make the best of it (because what else am I going to do?) I’m not a tireless crusader for deaf rights or an incessant hacker of accessibility technology; I care about other things (see: education) and prefer to spend my life and energies in other ways – even if it “costs” more for me to do that than my hearing counterparts.
This is a note I come back to every so often – maybe more and more often these days as I start running up against my limitations more frequently, as it starts to matter more how I speak, whether I can listen (now that I’m allowed to be exposed to certain conversations in business and otherwise that young kids just don’t encounter). I read Ebert’s post and it resonated; I wrote to understand how it resonated with me, and now… I post, to share what’s on my mind.