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.

BEA Social

Yesterday I did something that's been on my agenda for a while: attended a local social gathering for Advanced Bionics' Bionic Ear Association (BEA), which seeks to connect and provide information to a network of CI users and candidates. In my area, these meetings take place every three months or so, and now the beginning of summer (read: a time in which I'm no longer tied down with being a full-time student! hooray!) has provided me with the perfect opportunity to branch out and meet other people with CIs.

In a way, what happened when I walked into that room wasn't entirely unexpected. I was the youngest person at the gathering by far (several decades at least), and one of the only ones who was prelingually, congenitally deaf. I was the only one who had gotten her CI after twenty years of deafness. Most of the other BEA attendees were fifty or older, people who had lost their hearing gradually or suddenly over the course of their lives. As such, of course, their CI stories were far more successful than mine. Having an established auditory memory, having prior experience with hearing, having been assimilated into the hearing world (rather than feeling like they had always hovered about its boundaries, as I have felt) - all of these factors had made a world of difference for their lives post-implantation. I had a bit of a sinking feeling as one older gentleman, looking and sounding and behaving almost entirely hearing save for the bilateral magnets on the side of his head, told me about using the phone perfectly by the third day after activation. The third day? The third day after my activation, I was about ready to put a bullet through my head! It was a rocky uphill trek through territory I had never before known or experienced. It was not, by any means, a gratifying return to skills long since lost. The gratification has only emerged slowly.

Still, there was a small - very small - subset of other early- or congenitally-deafened people at this BEA gathering, including one who currently wears hearing aids but was considering a CI. These people signed (whereas the later-deafened people did not), and I sat with them and chatted for a bit. Of course, as often inevitably seems to happen in groups like this, the conversation turned to the question of identity. Groan. One woman (who, I could tell immediately, was strongly culturally Deaf) turned to me and asked me which group I identify with, post-CI. Other people had said, "Oh, definitely still Deaf" or "Hearing!", but I sat frozen for a second before tossing up my hands and signing, "I don't know." I certainly did not consider myself Deaf a year ago, and do even less so now. But I'm still far from identifying with hearing people sometimes. I'm just happy with resisting categorizations, however much other people seem to like them. They make introductions easier, but otherwise they don't come to much good. Still, I was a bit haunted by the recurrence of that question, one year later (or twenty-one, depending on how you look at it). Who cares, I suppose.

All in all, meeting and talking to such people was a breath of fresh air in the sense of sharing common hearing experiences, but it also emphasized to me how very different each individual's journey with the CI can be. Personal history and intrinsic factors figure into the equation more than some people think. But chin up. I survived those chaotic first months. I am not hearing, nor will I ever be, but I'm doing so much better than I was one year ago. Yes, a cloud of doubt about my ultimate future limitations still hovers over my head - a cloud that seemed to loom a little bit closer after yesterday. But comparison to others is never the way to go for anything. This is my journey, and I'm going to make it on my terms and to the best of my ability.

Enough internally-conflicted talk. My one-year remapping is tomorrow, and that's a cause for celebration. From electric shocks to hearing and learning and experiencing and (!!) understanding, I think I'm going to walk around with a grin on my face all day.

What's in a Word?

Semantics. Connotations. Linguistic accuracy. What's in a name, anyway?

As someone who lives with a hearing loss, I've long struggled with how to label myself. Granted, when I was young, it was simple: I was deaf. (Disclaimer: little-d, not big-D. The divide, which occurs over culture and identity, is something that I won't go into too much here. Suffice it to say that I view myself as having always been removed from the Deaf community.) And, as someone who had that distinction clear inside her own mind, I became annoyed with the occasional insistence that hearing people had at calling me "hearing impaired." I always preferred the term "deaf" to that clunky, overly-politically-correct, disability-focused word. To an extent, the term can still make me bristle.

However, since my cochlear implant things have grown even less simple. I've discovered problems with calling myself "deaf." Is it really fair to use that term, when at this point I am hearing at almost a normal-range threshold? (Hearing, mind you, not necessarily understanding.) In a way, saying that I am deaf denies the progress I've made in learning how to hear. Moreover, it embraces a binary that hearing people, all too often, are too quick to embrace. That is, they have a difficult time conceptualizing what it's like to live with a hearing loss: they tend to think that it's all or nothing. Either you can hear, and understand everything, or you can't hear at all. The word "deaf" locks me at the far end of that spectrum - the end of the spectrum that I've spent the last 11 months trying to escape. Granted, without my CI I am literally walking in silence. I am still deaf. But, in the context of living in the world and talking and interacting and - whoo-hoo! - hearing, it hardly seems accurate to describe myself that way. "Deaf" doesn't acknowledge my everyday reality, and it gives other people misconceptions besides.

If I don't personally use "deaf" as a cultural term, and if I don't use it as a descriptive term, then what should I call myself? In the days right after the CI, when my whole life seemed chaotic and new, this question was the least of my troubles. But now, as I settle more into this hearing life and start to take it for granted, I've started feeling more conflicted.

First of all, I refuse to say that I am "hearing impaired." Besides the history that I associate with the term, I feel that it's not entirely accurate. I am hearing so well, and the CI has worked out so positively, that I can't call what I hear "impaired." The sounds entering my brain are there - they're just different from what hearing people hear, and I'm still en route to figuring them out myself.

Moving on. Deaf: feels habitual, feels comfortable, but is off the mark. Hearing: pshaw, no. Hearing-impaired: certainly not. How about "differently hearing"? Sounds awkward, and verges on euphemism. Atypically hearing, alternative hearing, hearing through a processor, hearing more than you think but understanding less than you think, hearing disrupted, hearing-but-interpretatively-challenged, in my own hearing world, en-route-to-alternate-hearing-universe...

In the end, I'm going to throw up my hands and call myself cyborg-hearing! (Kidding.) Or, at least, someone for whom the deconstructing effect of the CI has contributed to an increased resistance of classifications. Even if I still need a word with which to describe myself to all of those typically-hearing people.

The D-Bomb

I’m never quite sure how to drop it, or when. But I need to figure it out.

By “it,” I mean the question of telling people I meet that I'm deaf. I’m not exactly like them, I can’t do certain things, and specific accommodations need to be made for me, but I also want to be clear about the abilities that I do have and to avoid making the hearing-loss issue intimidating. It’s a quandary that, post-CI, I still struggle with. How to be clear, straightforward, approachable, fair, but yet realistic?

It’s a tricky challenge with no one-size-fits-all solution. Sometimes, at the outset of a conversation or a relationship, dropping the “d-bomb” simply isn’t necessary – or relevant. When applying for a job or internship position, no way am I going to mention it. Why should I, when it doesn’t at all affect my qualifications or my ability to perform? Starting every introduction email with the disclaimer, “By the way, before you decide how to interact with me in the future, you should know that I am deaf” – that’s not an option. It’s selling myself short. I refuse to let one aspect of my identity define my every interaction. In pursuing my real-world activities, I am a student, a reader and a writer, a hard worker, a participator, et cetera, first. I begin long-distance interactions simply as myself – which of course brings up the interesting question of how my deafness fits into this holistic sense of self-identity. (Messy question; not going there.)

However, when the time for an interview rolls around, or when I find myself about to (gulp) actually meet the individual with whom I’ve been corresponding, I need to decide what to do. In the past, I’ve tried both approaches. I’ve stayed mum about the d-word and showed up hoping that the situation won’t escalate into something unmanageable, and/or that my lipreading skills will be able to save me.

(Sometimes, that’s worked beautifully. Other times, I find myself reeling and backtracking, trying to explain away the minor snags that have suddenly turned into ogres. It depends on the person and the situation, it really does. If I bring up the deafness issue with some people, I look back afterwards and wonder why I made it such a big deal. Why, it really was irrelevant. Other people, however, need to be slammed over the head with it before I feel like I can approach a semblance of my normal ability to function.)

Or, I’ll play my cards straight before I even meet this person face-to-face. Deep breath. Time to let the cat out of the bag. I’m embarrassed every time it happens, for whatever reason. I suppose because I’ve succeeded so far in my life goal of Interacting Normally With Hearing People, and now I’m about to voluntarily set myself apart.

(Interestingly, this approach of prior disclosure is also successful, or not, depending on the person and the situation. Some people, if they’ve been given time to ruminate over “Ohmygoshshe’sdeafIdon’tknowwhattodo,” come to pieces in the actual interaction. They’re more nervous than I am, they overenunciate, they question themselves, and so the entire meeting becomes damage control on my part, trying to reassure said person back to the impression-of-hearing-person-normalcy that they had before. Other people, however, simply appreciate the heads-up. I’ve had several surprising situations arise where I’ll meet someone who unexpectedly knows some sign language or who already has deaf friends or family members – if I hadn’t mentioned my own deafness, I wouldn’t have received the gift, so to speak, of being able to interact on this level.)

The d-bomb is troublesome even in casual interactions. Sometimes I’ll be out and about and meet someone new. He or she is easy to lipread, and so we settle into a comfortable conversation without me ever bringing up my hearing loss at all. I’m enjoying myself when this new hearing companion does something that does not adhere with my version of reality, such as saying “Give me a phone call!” At that moment, of course, I have to break the mold, bring my deafness out of the closet, and say, “Whoa, hold on.” And then, of course, the situation feels awkward because I hadn’t mentioned this gee-probably-rather-important-fact before. Why? It wasn’t necessary. I was comfortable then. Honestly, I forgot.

Or, I’ll indicate to a new friend what I need in a one-on-one interaction, only to see that friend again in a group and realize that he or she really doesn’t get the big picture, doesn’t get that what works in one situation falls apart in another. Then, I’m obliged to speak up and clarify further, but too often it becomes easy to embrace a self-defeatist mindset and let things unfold as they will.

This is a problem: I tend to only mention my deafness when it becomes troublesome. Otherwise, I shove it under the carpet and ignore it. Ignoring it is something I’ve tried to do for a while, and it doesn’t work. Not only is it unfair to me, it’s unfair to the people whom I could construct valuable relationships with, if they only knew what to do. Approaching the hearing world head-on was part of my decision to get a CI, and since then I’ve gotten progressively better at being up-front. (But, but – there are situations where being up-front isn’t necessary! Where I can cope! Where lipreading is fine! Where the CI is amazing! Where I don’t feel the need to let every single person I meet know just how complicated all of this is! Like I said, all of these questions can get tricky.)

There are other questions I’m mulling over, too. For instance, what language should I use? Oftentimes “Hello, my name is Rachel and I’m deaf” doesn’t seem to work. Hearing people don’t know what to do with that word, that entire concept. They’ve often never thought about what it means. I’m as likely to get stares of shock as I am offers of accommodation. One of my deaf friends once advised me to introduce it through subtler means and action-significant words, such as “I lipread” or “I need you to look at me when you talk.” There, is that better? I’ve revealed something important about myself but also given my companion some indication of how he or she should behave. That's more productive and fair, isn't it?

Interestingly, talking about my CI fits into the entire d-bomb dilemma. “So that thing lets you hear?” people will ask me. I hesitate before giving them an answer. I want to explain that hearing isn’t the same as understanding, that it’s a beast of a process, that what I’m capable of now isn’t what I’ll be capable of in six months, or (certainly not!) what I was capable of when I first got switched on. But, for the uninitiated, hearing is a binary: either you can, or you can’t. I don’t want to contribute to misconceptions that, with my CI, I’m able to function one hundred percent normally, but I also don’t want to underemphasize the immense difference it has made in my life. So I sidestep the question a bit. I try to respond to the confused inquiries of “If you have a cochlear implant, then, doesn’t that mean you’re not deaf after all?” I try to address how lipreading and structuring my environment are still very important tools, even though, yes, I technically “can” hear at an almost-normal plane. The concept of balance between two worlds, deaf and hearing, is difficult for many people. And, in a way, the CI has only made it more complicated to explain.

In the end, it’s easy to want to give up. I find that sometimes there’s no way to be consistent about how I present myself and my deafness. But there must be a way to be consistently included, consistently understood, consistently enabled. There must be – just hold on, though, I’m working on it.

You Know It's Loud When...

The place where I live in college is big on parties. Almost every night the sounds of music, commotion, and people talking rushes through my wall into my room. I cannot escape (or, rather, refuse to escape), but it's a good exercise in filtering out irrelevant noise.

But last night - someone's twenty-second birthday. The house is packed and rather drunken. I've had a long week and am off to bed. I walk down the hall, past hordes of people squished together, sloshing their ubiquitous red solo cups. I am about to wash my face in the bathroom and have taken off both my hearing aid and CI. I float in silence. In that state of total deafness, I sink into my usual detachment and amused objectivity. That voice in my mind speaks up wryly; I wonder if any of these people realize how strange they appear from the outside, with the sound turned off, mouths gaping and faces contorted into improbable expressions. I want to laugh, even as I find it slightly grotesque. The uniqueness of my version of reality accompanies me as I weave through the crowd, not caring for any of it now that I cannot hear.

But I can hear, that's what disturbs me most: the music is so loud. It's thundering through my body, the beat sharply defined and harsh. And, in my right ear, in my non-CI ear that still has some residual hearing left, I can hear faint, far-away thrums. They slam into my head like popping, shocking my brain with their brute physical force. (Not so in the left ear, which remains eerily silent, so different from when magnet fastens onto skull - wow, I have become completely dependent on that apparatus.) A group beside me shouts, the song changes. And I hear it. If it's that penetrating and noisy, that even my deafness cannot shut it out, how can it be possible that the people around me are not going deaf themselves?

Except I know they must be. This is too much noise for it to be otherwise. I am reminded of a conversation I had with my auditory therapist earlier this week: just wait a few years. Soon more and more of them will be struggling to hear, to keep up, to understand, and I'll find myself better equipped to cope with hearing loss than any of them. Now, that's ironic.

And, yes, the silence as an escape is nice, but embracing it for the sake of 120 decibels of a pop song? Not worth it. I keep feeling troubled by what hearing people do to themselves. Breathe. Turn the volume down, for your own sake.

Success, Undermined

One thing that frequently bothers me is the uniqueness of my position, not only with receiving a CI at my age in my circumstances, but in doing the things that I do, as a deaf person.

I applied for a job earlier this month, and got a prompt email response praising my resume as well-qualified, with the inevitable line, "Please give me a call at xxx number so we can discuss this further." Oh, jeez. This again. Obviously I hadn't mentioned the whole deaf thing from the start; it was completely irrelevant. But obviously it had to come out now. So, taking a deep breath and feeling vaguely abashed (as I always do in such situations), I fired off a reply explaining that phone calls weren't an option for me, could we meet in person or email, et cetera. The answer I got: "How wonderful that you have gone this far in spite of being deaf." Uhhh. Yeah. Gah. And then a few evasive lines about being uncertain of whether I could manage the job because of my phone incompatability and challenges in receiving verbal feedback. Well, so much for that.

This is just one recent instance (and a pretty mild example, at that) of several things that I keep running up against. The necessity of labeling myself as deaf - which I am, yes, on one hand - even while I feel like I've morphed into some strange organism with head jumbled full of noise. Deaf, but not entirely. And not hearing either. The question of what I will be able to accomplish or do at any time in the future, and the uncertainty that accompanies such a state of flux. The assumptions that hearing people make, that everyone has the same mainstream abilities. The way I myself make these assumptions, that other people can see or run or jump or be athletic or learn quickly or eat an unhindered diet. (This bothers me. I hate assumptions, and hate that I should make them. But, in the end, aren't they necessary for collective groups to function?) Finally, the resentment that a deaf individual with my level of proficiency (in academic accomplishment, in verbal skills, in whatever) should be considered "exceptional." The perception that deafness is some sort of terrible barrier against high achievement.

Don't get me wrong, deafness can be a terrible barrier. No one knows that better than I do. But what most frequently makes it terrible, in essence, isn't the competence of the deaf individual in question - it's simply that the way the mainstream world works is incompatible with what that individual needs to thrive. Language. Accessibility. Early intervention. Visual media. Understanding. A social and therapeutic safety net. That this ideal environment doesn't exist isn't anyone's fault, not entirely. It's a problem that I don't quite know the answer to, but it bothers me constantly. Deaf people (contrary to the old moniker) aren't dumb. But I look around and don't see any of them at Stanford. I doubt there are very many at Harvard, Princeton, or Yale, either. I see very few of them in high-functioning, mainstream professions. I literally never see cochlear implants when I'm out and about. I think I'd just about do backflips if I ever glimpsed one. Growing up, I never had a deaf role model - my world was full of hearing people, and I wasn't sure what to do with myself. Many of the deaf peers that I had while growing up currently struggle in school, or hate it, or gape that I can achieve grades and acknowledgements and milestones on par with my hearing peers. In such a world, it's easy for me to forget that other accomplished deaf individuals exist.

This could be cause for me to celebrate and feel smug, but it isn't. I am reminded of how much I want a world where it's simply ordinary for deaf individuals to succeed to a high standard. It's not just that I don't want to be singled out. It's that there is no real cognitive, biological reason why more people with hearing losses shouldn't have the opportunities and experiences that I have had. (Social, political, psychological, and individual trends come into effect instead - now those are the snarky ones.) Why me? Why should I have this, if others don't?

This isn't a post intended to lay out areas in which the framework of deaf life in America could improve - clearly there are many - but, rather, a bit of a meditative outburst. These outbursts happen to me every once in a while, and I think the current one is worthy food for thought. This year I'd like to grapple with such questions a bit more head-on, as well as reach out and find other deaf individuals who have succeeded in their areas of interest, and how, and why. Yeah, deafness can be a big deal - but at the same time it isn't. With the right kind of environment, it really isn't.

If They All Go Deaf, Will There Be More Signbooks?

So, it turns out, technology can be a good and a bad thing. Today, I came across two deafness-related stories in the news, both connected with technological advances, but with far different repercussions.

The first is a study, published this week in the Journal of the American Medical Association, that reports that one in five American teens have some level of hearing loss, much of it noise-induced. The proportion of teens with hearing losses has increased in the last 15 years, as devices like iPods and MP3 players have entered the mainstream.

http://www.latimes.com/news/science/la-sci-teens-hearing-loss-20100818,0,559994.story

I found this story alarming, besides a bit of fleeting amusement at visualizing myself suddenly surrounded by more deaf friends. Hearing loss is not easy. And, trust me, it's definitely not worth it for some amplified music in this already noisy world. From recent personal experience, I've found it surprising just how loud iPods can get. My CI conveniently lets me adjust the volume of anything I hear, so the volume control on iPods is secondary, but the level of noise that does blast out of those tiny things is mind-blowing! (At the same time, it reassures me to know I'm not at risk - no hair cells left to lose! All the CI can do is give me a headache.)

The next is a neat piece about - no, not an audiobook, but a sign language-narrated book! (Signbook? Haha.) It's a new iPad multimedia application that allows viewers to watch the story "Danny the Dragon Meets Jimmy" in sign language. Multimedia isn't just for hearing people anymore! And who knows, maybe future developments like these could get more deaf children interested in reading.

http://gadgetwise.blogs.nytimes.com/2010/08/19/an-ipad-book-for-the-deaf/

How cute. I sure could have had fun with this while I was young!

Pinpointing a Hearing Loss

It's one of the most frequent questions people ask me: "So how much can you actually hear?" Some seem befuddled by the notion that I am not completely deaf, that I do hear something, but that what I hear isn't anywhere near what they themselves hear. Having never been hearing myself, I often end up at a loss for words. How to describe my experience in relation to theirs, when I do not know what "normal" is?

One of the things that hearing professionals do for parents whose children have been diagnosed with a hearing loss is play simulated clips of what their child's world sounds like. My own parents have told me about their experiences with such audio clips when I was young, and say that it helped them cope, understand, and move on. Earlier today, while reading another deaf-themed blog, I found this website that provides similar simulations:

http://www.hear2learn.org/CICSsim/index.html

Of course, this site is targeted toward helping hearing people (like my parents, years ago) understand what deafness and hearing loss sounds like, and so it would be useless for me to "listen" to say whether or not it's accurate. So, to my hearing friends and readers out there - is this surprising, eye-opening, appalling, just what you predicted? Any insights?