It's About Total Communication

"Do you still use total communication?" an old friend of mine asked me this past week.

It'd been a while since I used the term, but I said (and signed), "Yes. Yes, I do." We sat down and proceeded to catch up over coffee, and it occurred to me that "total communication" is, in fact, the best way to describe the varied conversational strategies I seek and use in my daily life. It also occurred to me that I haven't blogged about it before, at least not beyond a passing remark or two.

The term total communication (it even has its own wikipedia page!) refers to an idea that tries to find a middleground between the long-fraught territories of oral versus sign language-based deaf education. It was in vogue during my stint at the New Mexico School for the Deaf in the early '90s, and I also remember it playing into the philosophy of the summer camp for the deaf I attended from ages nine through 14. (By the time I entered mainstreamed schools in elementary school and onwards, total communication had firmly ingrained itself into my family's lifestyle and there was no going back.) Many of the communication strategies I used in my younger years and continue to use today are closely tied to total communication, which seeks to offer deaf individuals with a range of communication tools and strategies, from sign language (ASL/SEE/pidgin/whatever) to oral and auditory skills, to lipreading to reading and writing, to visual aids and captioning and all the technology that's available at the moment. Even cued speech, too, which I personally don't know but have seen a few friends use. (It's wild.) Basically, any form of communication goes – when you're living with a profound hearing loss, you need to make use of all the tools you can. You need to be multidimensional!

I've been reflecting on this multidimensionality lately, as it continues to be very marked in my life. With the recent medical/treatment/education shift to cochlear implants and other advances in technology, my opinion is that total communication is no less important than it used to be. Deaf culture-based arguments aside, a cochlear implant is not a "fix." It does not completely "cure" a child of his or her deafness, or an adult for that matter. I'm still as deaf as ever once the device switches off. When it's on, it has placed a massive amount of sound waves in my possession, but the sound quality still doesn't equal natural hearing. I still reach for my bag of tricks. As I get older and settle into my new sense of identity with the CI, I find that I'm strangely fond of my ability to switch gears at will. Listening is coming, slowly. I can lipread. If I'm with another deaf person or with a close hearing friend who signs, I sign. I see it, understand it, use it, and find it useful. Otherwise, I speak and that works perfectly well. I watch for nonverbal cues. I dodge any complications with making phone calls by texting and emailing constantly. Depending on the situation and the person, I may find myself communicating in many different ways. Being flexible with communication has empowered me in many different ways, and I find that I'm fondest of the people who can be perceptive and flexible in their communication strategies as well. It's a useful skill.

I keep dwelling over the state of deaf education these days, hoping that the new focus on cochlear implants doesn't smother all the other strategies that can make a deaf individual successful. It scares me to think of dumping a deaf kid into everyday life armed with his or her CI alone. Heck, even if that deaf individual doesn't require sign language after receiving a CI, signing is still worthwhile. (Signing is worthwhile for hearing people too. If only because it's fun.) And, switching to the other hand while returning to the Deaf culture argument, a fiercely sign language-based lifestyle doesn't justify ignoring the prospects of communicating via listening, lipreading, or writing. It's not one thing or another: the more ammo you have in your arsenal, the better. I used to be ambivalent about this idea, as one might find looking back over the very first posts of this blog, but I'm not that way anymore.

I sat down with my friend this past week, as I've sat down with a few other longtime friends this summer. We both talked out loud, we signed, we probably found ourselves lipreading and watching each other closely. It made things easier for both of us. I walked out thinking of a multiple-choice exam in which the answer is "all of the above." Total communication. That's it. The best part was doing it so effortlessly.

One more scenario: this morning I went to drop off a big package at the post office. Standing in line, I grew distracted and didn't realize the clerk was calling me to the counter. Then I grew distracted again and needed to ask him to repeat what he said. These two things must have tipped him off. I saw his expression change a bit. He started speaking more clearly. Then when I was walking off, he raised his open palm to his chin, then extended it outward: clearly the sign for thank you. Once, at a different time in my life, I would have almost kicked myself. Had I been that obvious, made my disability that apparent? Had I failed to pass completely, to integrate myself seamlessly into hearing person land? (Passing is a topic I ought to blog about sometime.) This time, though, no matter. I grinned, somewhat nonsensically signed thank you back, then walked out thinking, I love it when random hearing people do things like that.

Total communication.

Deaf Dining: Mozzeria

Today marked probably one of the most unique and interesting restaurant experiences that I've had. A friend of mine had seen the following article about Mozzeria, a new pizza restaurant in San Francisco's Mission district, and, along with another friend, today we decided to go:

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2012/01/04/FD2U1MKA7S.DTL

The cool thing about Mozzeria is that it's owned by a deaf couple, most of the employees are deaf themselves, and nearly all of them sign. The two friends I went with today are both hearing, but both sign rather well (both have been former roommates of mine :) ), and I think the three of us were all excited to see what a signing dining environment would be like.

I admit, walking into this restaurant and immediately having the hostess sign to us, then raise a printed paper in case we were hearing non-signers and hadn't understood, was a pretty amazing moment for me personally. I felt myself shedding much of the communication anxiety I have when I go out in public, especially out to eat when I know I will need to interact with a waiter. Talking with hearing waiters is usually fine for me, and I've done it for years, but I do miss things they say - when they go on about the special of the day or ask other unexpected questions, I'm thrown off and rely on my hearing friends to fill in for me and/or translate. Today I was pleased to discover how reassuring that added measure of communicative clarity felt with sign. Is this the way the world feels for the hearing, so much more open and empowering?

Our brunch/lunch at Mozzeria was in many ways a typical eating-out experience: we took our menus, ordered, ate, and paid the bill amidst our own conversation, interactions with the waiter, etc. But the fresh surprise I felt, despite myself, every time a waiter or other employee reappeared and started signing to me - signing! - made me feel more alive to, as well as relaxed in, my surroundings than usual. Even though I've long detached myself from the Deaf world for a variety of reasons, the truth is that I never feel more at home than when the people around me are signing. I saw busboys and chefs walk by signing across the room to each other. A few of them had hearing aids. Several of the tables were filled with deaf people, and one older lady waved over and started a conversation. I can't remember the last time I interacted casually with other diners at a restaurant. I don't know if it's at all typical for hearing people (minus a very odd extended conversation my family once had with a total stranger in a Chinese restaurant in DC), but for me chance interactions with hearing strangers in public places are rare. At one point, the deaf group left and a hearing party came in to replace them at the table beside ours, and the three of us joked that now it was they who were out of place. Not that Mozzeria did not cater to non-signing hearing people - our waiter was hearing and spoke as well as signed, and the restaurant ran just like any other. But the vibe itself was different.

All of the above points were reiterated for me when, after our stint at Mozzeria, we decided to head over to another place for dessert. This was in some ways another highlight of the day (since after all the dessert was composed of New Mexico-style green chile apple pie! in San Francisco!), but ordering from the hearing woman behind the counter, zoning in on her face and nevertheless suffering a bit of a communicative bobble when she asked if I wanted my pie a la mode, showed me how nice it had been to go to a restaurant so centered around sign. If only once.

Now I hope I can go back sometime - and maybe take another hearing friend or two :)

An Evening With David Sedaris

Another recent hearing experience I've been meaning to write about (though it's been several weeks now) is the chance I had to go see David Sedaris read on campus earlier this month. Hey, it's never too late for reflection, right?

As soon as I heard Sedaris was coming, I knew it was something I didn't want to pass up on. But, even as someone who's big on writing, I'm not the biggest fan of going to author readings. The auditory experience (of hearing what a piece of work sounds like, or what interpretation the writer casts on it via his/her style of reading) has never been there for me, and I'd rather read the short story/poem/essay/etc to myself. There are few things more frustrating, both for me and my ASL interpreters, than trying to fully access a piece of work when the writer is reading briskly from the page, complex metaphors and imagery and diction and all. Even the most skilled interpreter, without the chance to rehearse extensively, has to work very hard to deliver an accurate translation/transliteration of a written work. Without relapsing completely into the abstract grammar and conceptual structure of ASL, that is. I hate having crisp verbal concepts from written English get lost in translation that way - after all, isn't it the English version that I'm interested in, that I've come to the reading anticipating to contemplate? My interpreters know this, and I'm always impressed by how well they do in trying to satisfy my literalist, straight-from-the-page tendencies. Still, oftentimes the easiest solution for me (and them!) is to get my hands on a written transcript of what the writer is reading, and just access it that way. Even if this in itself raises complications: if I'm taking the time to attend a reading, only to look straight at the page instead of the verbal performance, is it worth it? Might I just as well read that material at home to myself?

Now, I'm not going to say David Sedaris's reading was a sudden breakthrough in my history with author readings. It wasn't. But it was a big enough event for me to put aside my usual misgivings and go. (I've been trying to do this more often in recent months. Maybe part of it is conceit. If I can't access the full impact of what David Sedaris or another big-name author was saying, and how, then at least I can say I've seen David Sedaris.) And, combined with the fact that Sedaris was my first experience with trying to listen to comedy, I walked away with some interesting insights.

It was a full house in the on-campus auditorium where Sedaris was speaking, and I arrived at my seats in the front row to find my interpreter team cramming over copies of his essays to be read that night. (Apparently one of them had gone up to get his autograph beforehand, and when she let it drop that she was an ASL interpreter, he promptly insisted on letting her read over his material, apologized for not knowing there would be interpreters and providing copies in advance, and promised not to make any cheap sign-related jokes. I've seen too many of those, so props to you, Mr. Sedaris.) Apparently the preparation helped, for both interpreters zipped through Sedaris's essays and off-the-cuff remarks without any problem. It helped that his speaking pace was moderate; never did he rush ahead or get lost in his own flurry. Even when the crowd was roaring with laughter, he'd only give a small grin at most, take a breath, and move on. His material was lively, his essays provocative, and I walked away having had a good time.

But... there was still something I didn't get. There was still a sense of personal distance that hovered over my entire experience of the night. I think most of it had to do with the fact that, regardless of how skilled my interpreters were, I was still the one watching.

"His voice is just funny," one of my interpreters slipped in as Sedaris started talking - one of those side comments that they sometimes give me, to help me access the full context of what is going on. As soon as she told me that, I tried to pay closer attention. I cranked my CI up. I watched the sign language streak by, but at the same time I tried to hang onto Sedaris's voice, to understand exactly what gave it its comic effect. And, although I was able to match what I heard with what I saw, it was still just a voice. What made it funny? "He sounds almost like a woman," my other interpreter said after the event was over.

"Is that what makes him so good?" I asked her. "Is it the way his voice sounds?"

"He has such a unique voice," she told me. "It's really weird. I can't describe it - it's just weird. It's a great radio voice. You hear it and you can't stop listening."

I still didn't get it. I have no conception of how someone's voice can be alluring, mesmerizing, funny, or any of those things. Or if I do, it's on a very superficial level. I've noticed that, in everyday life, there are some voices I like more than others, though I can't say why. I've started recognizing some people's voices, at least once I identify the speaker and confirm my own subconscious expectations. Regardless of whether I like a voice or not, however, that's all the subtext I ever associate with it: like or dislike. I understand the concept of inserting emotion into your voice when speaking. I do that myself - it's something I take some pride in, that even before the CI I understood how to inflect my voice when I asked questions, and how to express surprise and sarcasm and excitement and flatness at will. (Even if I'm just about the worst storyteller because of my inability to achieve them in more complex combination.) To be honest, though, I associate verbal nuances more with facial expression, body language, or other subjective context. They're not something I can discern from listening alone.

So, back to David Sedaris. Throughout the night, I would hear the crowd around me erupting at some remark  he made. Afterwards I had a few friends tell me their sides hurt from laughing. But, other than a chuckle or two, I didn't laugh very much. First I'd hear the laughter - hold on, wait for it, something's funny. Then, after the slight time lag from the interpreter's end, my mind would race, converting the words from sign language to English. Finally, I would review what I'd just seen, and usually grasp what could have been interpreted as humorous in that sentence. But note the passive voice: I reviewed Sedaris's humor as an observer of that humor, not as a participant in it. The timing, for the most part, was lost on me. The words weren't uproariously funny in and of themselves, I wasn't hearing them, and my steps of mental translation seemed to whisk me out of the immediate moment in which comedy occurs.

This detachment doesn't happen to me as often when I watch movies or hold everyday conversations, in which more visual input accompanies the auditory. I left the reading distracted by the questions spinning through my mind. Yet again, what makes listening to someone funny? What's in a voice, anyway?

Only a few days later did one of my best friends give me an answer. "The read-out-loud aspect," she said, "is like being tickled. It strikes you differently when the timing and delivery are out of your control." Her simile made sense to me, at least cognitively. That's what I had been missing.

I still wonder what it would be like to hear it, I really do. Although I guess I'm not ticklish either...

ASL, Revisited

As I think I've written on this blog before, one of my biggest qualms about getting the CI was that it would represent a literal rejection of myself, a capitulation to the idea that I wasn't good enough to lead my life just as I was. In making my decision, I felt like I was casting aside the "deaf" part of my identity, which hurt regardless of the struggles associated with it. Six months later, however, I find that certain aspects of that identity will always endure, irrespective of whether or not I can hear. Sign language, especially, lingers with me in gratifying and unexpected ways.

I don't know how to classify my attitude about ASL before the CI. It had always somehow seemed like a crutch, a reminder of my inability to communicate like everyone else. I grew up with virtually no other deaf people in my life, and in my awkward preteen and adolescent years using my hands to converse only emphasized how different I felt from the world around me. Now, even though I am still far from an auditory communicator, I'm a skilled enough lipreader (and, increasingly, my CI is a helpful enough tool) that I've been able to distance myself considerably from ASL. When I am not in class, days pass in which I see no sign, in which I get along reasonably well (if not perfectly) in one-on-one interactions without it. As my hearing progresses, I find myself feeling more and more linked to the hearing world.

And yet, I am not. Not entirely. This has less to do with the fact that I will likely always need interpreters or other communicative assistance for some situations (and might as well accept it), and more to do with the fact that sign is wired into who I am. Now that I've experimented with other options, and come to see ASL as a bit more of a personal choice than a strict necessity, I feel freer to embrace its charm. I think in English and prefer to speak most of the time, but I cannot abandon the wonderfully deaf part of myself. Oddly enough, the CI has made this clearer than ever.

As much as I'm learning to be auditory, the truth is that I'm predominantly a visual learner. I retain information better when I see it - as with sign rather than mere lipreading. When I introduce myself to strangers, I find myself tempted to fingerspell and then give my sign name, and have them do so in return. Ditto for when other people do not understand what I say; surely I will make myself clear if I only spell it out? My hands writhe and itch by my side. A few times, absurdly, I've started to fingerspell to strangers before I've checked myself. (For the record, I've come to think that everyone should be able to fingerspell at the very least. It would make life infinitely easier.) When I am across a noisy room from a friend, I impulsively want to wave, to sign; shouting feels ridiculous, pointless, and tires me out besides. Sound notwithstanding, I cannot divorce myself from these inclinations.

When I settle down with my writing, sometimes I cannot think of the word that I want, at least not in English; however, I often find that I can sign its exact concept, its exact nuance. I lean back at my desk making sweeping gestures into the air, willing the English version to come. ASL, in all honesty, was my first language, and maybe this only comes across at such moments. Sometimes, when I am alone, I converse with myself using my hands. They become extensions of my thought.

Most importantly, though, sign language is what often defines many of my closest relationships. I've come to realize that, however comfortable I feel with lipreading a person, I often do not feel completely at ease with him/her unless he/she signs. I associate lipreading with strain, hyper-attention to detail, and continuous guesswork and exertion. Under such circumstances, it's possible to communicate well, but it's very difficult to relax. It's a subconscious association at times, but often the people with whom I feel most myself are the ones who sign, giving me confidence and dispelling my tension. Speech can make me feel trapped, painfully aware that I am at a disadvantage compared to my hearing peers, and confined in my ability to make friends only with the people I can lipread well. (Moving forward, I'm interested to see how the CI influences this.) But ASL is like a comfort food or a favorite book by the fire: in its presence, I can exhale and unwind.

Communication, clarity, security: regardless of whether I can hear or not, I've come to realize that I have the sort of fondness for ASL that stems from its being a part of my identity. It's hard to explain this to some hearing people, who, upon asking "Can you lipread?" and receiving my affirmative "Yes," ask no further questions about my communicative means and do not seem to wonder after my visual, secret self. For indeed ASL belongs to the most private part of me; perhaps this is part of why I avoided displaying it more publicly at a younger age. Or perhaps it was because sign language was too often questioned, too often stared at, too often made fun of or used as the brunt of crude jokes. Too often in my childhood, other kids would mock me with empty hand gestures and made-up signs. Even now, I find that my peers too often display interest in only the "obscene," "amusing," or "random" signs that add entertainment value to their lives, rather than true communicative meaning. (This is true for any language, I think.) If I have been reserved about sign, perhaps it is partly because I've gotten tired of this horseplay.

As I grow older and become a more skilled communicator in a variety of ways, and as I discover new horizons with the CI, I realize all of this more articulately. My identity with ASL is a quieter, more self-contained sort than that waved about by the strictly nonverbal, Deaf crowd, but it suits me well. Even if I woke up to hear perfectly one day, I don't think I could ever shun sign language completely. And that's reassuring.

Finally, one of my friends passed along this link not too long ago:

http://www.nytimes.com/2010/12/08/education/08language.html?_r=2&ref=us

Even though I admittedly sometimes dream of nothing more than reducing my dependence on ASL and interpreters (again, there's something tricky about it being a choice), reading this article was sweet and satisfying. If more people are learning sign language, if more people are considering a perspective, communicative means, and experience of the world so different from their own, then all the better. I used to be one to scoff at hearing people's naive and overly romanticized notions of ASL being "breathtaking" and "like hands dancing," but in the end, there's no language like it.

Seeing Another Language

During a rest stop on a road trip this past weekend, I glimpsed some hands moving across the room. When I looked up, my eyes fell on five or six deaf guys sitting at a table, signing animatedly to each other. A few tables down from them, another group sat, also signing. Immediately my heart leapt - as it always does, at seeing sign language used so fluidly and openly. But, of course, both groups were conversing in British Sign Language, which is completely different from ASL.

Oh. That's right, this is the UK.

If it had been ASL, I reckon I would have approached and struck up a conversation. But BSL was completely foreign to me. The facial expressions were natural and similar to ASL, and some of the gestures seemed intuitive enough. (Ha, my hearing friends are always demanding that I explain, "Why do you sign ___ this way? It doesn't make sense!" - yet this was exactly what I found myself doing yesterday.) As I watched, I realized that this was the first time I'd seen a group of deaf people since getting my CI, and I couldn't even understand them. How strange that felt. I'm far too used to having the meaning of speech evade me - but never, never sign.

That said, I've started learning the BSL alphabet (which seems ridiculous - a two-handed alphabet, really?) and hopefully will make some progress soon...

Order from Chaos

It's coming in baby steps, but with each day my hearing gets better and better. I keep marveling at the ability of the brain to adapt and rewire itself. My brain has somehow filed away an amazing number of sounds in only eleven days, and now I'm approaching a much more cohesive portrait of what the world sounds like. Still imperfect, still grainy and somewhat mechanical-sounding, but cohesive. What is essentially the staccato note of a nerve firing, over and over, is being interpreted, smoothed, and woven into a larger tapestry. I'm beginning to accept the presence of sounds new to me, and even to expect them, all while I listen for new noises. Which include: Myself chewing - and very loudly, I might add. Myself fidgeting and tapping my foot on the floor. The whir of the computer. The swish of clothes as I walk. Notes on the piano, high high low. Words suddenly fitting together as I hear them read from the storybook page. My current CI volume is maxed out, and I'm hungry for more - which is great since I fly back to CA tomorrow for a re-mapping on Monday!

This entire process is essentially order emerging from chaos. And it happens with little conscious effort on my part, besides attention and practice. It's all my brain figuring out this new stimulus, and starting to do that with poise instead of going haywire. (Now there's actually space inside my head for me to think, which is nice.) Imagine how many new synapses it must have formed since last week. And consider the fact that the 16 electrodes, or even the 120 virtual electrodes, of the implant are nothing compared to 16,000 normal auditory hair cells. If I "hear," it's all because of brain integration. I'll say it again: brains are remarkable, remarkable things!

At the same time, I keep wondering if the new connections I'm making are overriding older ones. I'm curious if that auditory cortex space that I'm learning how to use (heretofore almost useless, since I heard so little for so many years) was previously storing other information. Where would that information go? What was that part of my brain being used for? Surely it can't just have perched there, inert, for 20 years. Perhaps that's part of why CIs are harder for older congenitally deaf recipients to adapt to - the established nerve connections don't want to let go of their "free" storage space!

(The auditory cortex, highlighted here, must keep lighting up inside my skull! Check out the awesome source article, which discusses music and auditory memory, at http://www.dana.org/news/brainwork/detail.aspx?id=766.)

Of course, it's technology that makes all this possible, and once you start it's hard to go back. And, it seems, many people who are implanted never do. I had breakfast with a longtime friend earlier this week, and we discussed the decline of sign language and Deaf culture, mostly because of the advances of CIs. The Deaf community that was present several decades ago, a community which arose from the small group of people sequestered together in institutions because they could not function in the hearing world, is diminishing. With anger and resentment, surely, but still diminishing. Technology has opened up other options, and many people with hearing losses can now leave sign language behind in order to negotiate their mainstream world with success. For my part, I don't know what I would do without the high-tech advances that connect me to my world - not just CIs, but email and the Internet and Skype and smartphones. (This deserves its own post at some point.)

Anyway, when I met my friend a few days ago she asked me if, sometime in the near future, I'd prefer she stop signing to me. I was startled. Despite the roaring noise taking over my skull, I hadn't considered the possibility that sign language could be no longer necessary between us. That it could become a relic of my past. But she was right; it could happen. "No, keep signing," I told her.

Similarly, I had coffee with another longtime friend this morning. He has gradually lost his hearing over the course of his life, and was worried that with the CI I would stop signing to him. He explained that a few of his deaf and hard-of-hearing friends have taken that path, and nowadays brush sign language aside because they only want to speak. Immediately, I saw a side of the CI debate that I hadn't fully grasped before. And it provides its own chaos, its own dilemma. What happens to those without CIs who are left behind? When their communal sign language declines, they must feel abandoned, betrayed, confused. Where do they go, when they want to form relationships, but when they can communicate with fewer and fewer people, however hard they try? The worst part of being deaf is this painful isolation and limitation - which I know all too well. What happens when your world becomes even more limited, when those who used to sign no longer do?

These questions surrounding sign language are complex, but my feelings are in line with what I've written before. It doesn't have to be sound or silence. Either-or. Regardless of what happens with the CI, sign language will hold a place in my heart that spoken words cannot describe. Many of my closest and most valued relationships have been cultivated in its presence. It has shaped my perceptions and the flow of my thought. It reassures me and allows me to relax, just as I imagine someone else might feel upon hearing the native accents of his homeland. Like all languages, it has a history and a personal significance that extends beyond its practical use. However far I dive into the world of hearing, I cannot let these things go.

Even as I take delight in the brain, in sound, and in technology. Since I'm still straddling that fence, I'd best find a comfortable place to sit.