The Glowing Blue Light

By Miguel Aguayo

For the first eight years after becoming profoundly deaf, I tried living in the hearing milieu denying my hearing lossImage of figures in a circle holding hands. and passing as if it did not exist. This made conversations with me inconvenient for hearing co-workers and friends to maintain a conversation with me outside the workplace. As a result, countless of weekends were spent as a spectator social activities instead of being a participant.

Giving up on that scene, I decided to socialize with other deaf people. But my integration in the deaf community was also a challenge because people of Deaf Culture did not roll out the welcome wagon for those who happened to become deaf.

The only real commonalities I had, as a deafened person, with Deaf Culture was the absence of sound and being victims of patronizing attitudes and the experience of discrimination when engaging with hearing folk.

It took many years of stubbornly attending deaf community events and refining my sign language skills before being granted a small measure of tolerance. But even then I really didn’t fit in. I was a naturalized citizen in the deaf community who was accepted and respected but not embraced by its members.

My decision to become a deaf community member was good for me despite the differences. Socializing with people of Deaf Culture changed me. I was no longer ashamed to admit being deaf and stopped longing for the days when sound was part of life. At that point, I ditched the hearing aid that had long since stopped offering benefits.

But a life absent of relatedness can be a lonely one. Although people, both hearing and deaf, said that they understood the impact of hearing loss. They really didn’t. Neither can someone with out hearing loss or one who is raised with deafness can develop an empathy for what a deafened people experiences.

Genuine empathy from other deafened people is what drew me to the Association of Late-Deafened Adults (ALDA). I joined the association in its early days when it was just a small group of deafened folk using self-help as a way to make life without sound more coherent.

Like myself, ALDAns were thrust into a twilight zone between the hearing and deaf worlds. They too were in a place were only deafened people really understood. A feeling of belonging amongst deafened people was as mesmerizing as a fly finds warmth in the soft glow that emits from a bug light.

The draw of empathy and understanding was so strong that promoting self-help became one of ALDA’s primary objectives. Chapters were encouraged to provide it for members who struggled to cope. ALDA provided self-help training though a dedicated track at ALDAcon, its annual conference, to ensure that the chapters had a steady flow of leaders who could provide structured support to recently deafened folk.

Regretfully, self-help has vanished from ALDA’s mandate. Training is no longer offered at ALDAcon and, as far as I can tell, the chapters do not organize self-help sessions for those coping with acquired, profound deafness.

It’s hard to say why self-help fell off ALDA’s radar.  There could a number of causal factors. I  don’t think anyone knows for sure but cochlear implantation may make deafness less isolating at its onset. It might also be due to Facebook and other text-based social networking outlets helps deafened folk to maintain their pre-hearing loss relationships. Perhaps ALDA is simply populated with long time members who no longer need self-help.

Whatever the cause, the blue light bulb has burned out for newly deafened folk and this brings sadness to my heart.

Closed captioning!!!

by Dr. Kathryn Woodcock, 2001

Do I get excited about television captioning? What would you think if you couldn’t count on the program producer to provide a sound track without threat of lawsuits?

I don’t have all the proof, but I’ve organized some catering in my day, and until someone provides contrary information I contend that the typical production spends more money on sandwiches for the cast and crew than it does on captioning to make the program accessible to deaf and hard of hearing viewers. (I say ‘sandwiches’ metaphorically: a lot of them get fed much better than that.)

While some networks and producers are marvellous, there are too many who protest on principle against the ‘expense’ of closed captioning.

Don’t get me started on advertisersEvery boycott campaign is based on the principle that advertisers call the shots in broadcasting. When you consider that captioning a television commercial costs just a few hundred dollars even on a rush-overnight basis, why would any advertiser expect me to buy their goods or services without captioningCommercial captioning costs less than $300 per spot! (Source: National Captioning Institute, October 1997; call 713/917-7600.) Why would they even expect me to see their captioned commercials if they advertise on a program that isn’t captioned? Put program captioning in your contract before you buy advertising time.

Ten percent of the population has a hearing loss. Get a scratch pad and figure out how many deaf and hard of hearing people live in your town, work in your company, shop in local businesses and vote in this country.

Mobilize your indignation.

Captioning costs and the comparative production/acquisition information were provided by the National Captioning Institute in February 1997.

 

Production cost

Captioning cost

%

Made-for-TV movie

$3,500,000

$1,600

0.04

Primetime sitcom (.5hr)

750,000

400

0.05

Primetime drama (1 hr)

1,200,000

800

0.07

Soap opera (1 hr)

130,000

400

0.31

Regional sports (3hr)

20,000

600

3.00

Syndicated hour show

825,000

800

0.10

Other examples: 

  • In an 8-month period in 1995, Lifetime spent $100 million on original programming.
  • Lifetime paid $500,000 per episode to acquire 88 episodes of Chicago Hope.
  • Turner paid $1.2 million per episode for ER, considered the highest cable license fee ever paid for a series.
  • Lifetime paid $600,000 per episode to license 112 episodes of Ellen
  • fX paid $600,000 per episode to license The X Files.
  • USA network paid $75 million for a 4-year license term for 105 episodes of Walker, Texas Ranger. Columbia Tri-Star also made separate deals to broadcasters for weekend runs of this series.
  • USA network will spend $175 million to develop digital programming for the 1996/1997 season, up from $140 million for the season before.

I heard a song today, oh boy…

by Dr. Kathryn Woodcock, 1991

Today, the radio gave forth with a tuggingly familiar bass line. It was one of the “lesser” tunes not played too often, but there’s nothing quite like McCartney on bass. The recollections flooded to my head. First year university, the Residence, the floor parties, mandarin oranges, that pop machine that had bottles in it, flunking calculus … you know how evocative music is of particular places and times, and the feelings you were having? Thoughts and memories long forgotten are unearthed at the sound of a particular song. You want to feel like your high school formal? Just pop a tape onto the stereo and all you have to do is dream, dream dream dream…

Except,…was I wrong? I kept waiting for the bass intro to lead into the first verse of the song, but the song seemed to be all bass. My first impression was that my guess had been wrong. But still, it resonated with familiarity. Though I couldn’t be sure that it was the song the bass intro had resembled, I was having a sinking feeling that it was that song after all. Except it was gone, gone for good, leaving just a trace of that inimitable left handed guitar to tease and taunt me: standing starkly in relief without competition from other instruments.

To be ambushed by the loss of this song shook me. Not from unexpectedness, because it was entirely predictable, in the abstract. That is what a progressive hearing loss is like. Like becoming blind by having first the red objects disappear, then the green ones,… And I wasn’t mourning the part of the song that was gone. The erosion of this song was a tragedy for me for the pleasure I could take in the part that was left. And the certain knowledge that that perfect bass would soon fade the way of the sax. Taking a favoured tune not partially, but entirely away.

I mourned the imminent loss not so much of the acoustical beauty of the sound as the emotive value attached to the song. What will I do when the rest disappears? For now, I could regenerate the missing instruments in my mind—a sort of mental karaoke. I can even live without the music of tomorrow—but my memories are keyed to the music of yesterday. Will losing the old music leave me with no key? Entombing the memories forever? Regression to the magic of first year university will not be just a record away.

To give up one future for another is the kind of thing many people do, by choice or chance. You make a new one with what you have to work with. To lose a past—well, you can’t go back and get another one. What will fill the hole it will leave?

This article previously appeared with my permission in The 1991 ALDA Reader

Deafened adults: fallen through the cracks

by Dr. Kathryn Woodcock, 2002

THE HEARING BEGINNING

There seems to be a lot of assumptions about adult-onset deafness. The first assumption is that adults become hard of hearing due to age, therefore anyone who loses their hearing as an adult becomes hard of hearing. In addition to hearing loss associated with aging, known as presbycusis, there are many other ways adults become deaf. For my convenience, I made up four groups.

  • Medical – eg. virus, measles, meningitis, drug reaction
  • Surgical – especially due to neurofibromatosis type 2 (NF-2) removing the auditory nerve
  • Traumatic – accidental injury
  • Progressive – noise, hereditary, mystery (probably hereditary), aging

Traumatic and surgical causes typically occur “overnight”. Some medical losses can be equally sudden. These are not mild and moderate losses. With surgery and some injuries, damage to the nerves leaves no sound perception at all. With surgery, there may the advantage of some advance warning, but with sudden loss you go from hearing one day to deaf the next. With a sudden severe loss, even though some people with an identical degree of hearing loss may function as oral/hard of hearing, the lack of experience and the emotional reaction may make any residual hearing completely useless.

Progressive losses may be detected at the hard of hearing stage, but either slowly or suddenly cross over the line to become deaf.

With gradual losses, there is less shock and more opportunity to adapt—learn to lipread by instinct, learn to use the residual hearing. But there is also more chance to deny the existence of the hearing loss or the degree of the hearing loss, since the change is so gradual it goes unnoticed. Or the gaps in hearing only seem to happen some of the time.

I know this one well, because I have a progressive hearing loss. No known reason, but its pattern is typical of many hereditary progressive cases.

When your hearing only fails you some of the time, it is hard to break old habits like asking a question when you are not ready to lipread. But little reminders like this are not too intrusive because your habits reinforce your belief that you can hear just fine. For example, you tend to make friends with people you find easy to lipread—I never had many very short friends, and lost touch with a ten-year pen pal after she moved to Toronto because she talked too fast.

You turn up the TV because you can hear the voice better but you don’t realize that you aren’t understanding any better. But you don’t know that you aren’t understanding it well, because you have no way to know what other people DO hear. For me, it was the telephone.

You hear the voice and you mm-hmmm along and you really think you’re hearing it. Your expectation gradually decreases from being able to understand every word to being able to catch the general concepts. My turning point was a telephone call where I needed the exact words, names, and I couldn’t guess them, even though they were a closed set.

I realized then that it didn’t matter that I could tell there was a voice there—what was important was what they were saying. I hung up the phone. I saw an audiologist who really reinforced that I had a deaf audiogram. Even though I had lived with a hearing loss for a long time, I learned a couple of important things.

First, you don’t have to live in total silence to be deaf. Deaf is when you can’t rely on being able to understand the other person when you pick up a ringing phone. And you don’t need to be born deaf to be deaf. That being the case, I decided that I must be deaf.

THE MIDDLE

Well, if anyone knows how to cope with not hearing, it’s the born-deaf people, so I decided to learn their language. I realized that my years of visual compensation for not hearing made it extremely easy to learn how to sign. In fact, my two hours a week in that classroom was the only time I could relax. From my years in the hearing world, I was used to guessing all the time, so it didn’t bother me that I initially only caught a fraction of the signs.

Through The Canadian Hearing Society, I learned of a support group of deafened adults. What I heard of their experiences made me feel that there were still more things about my experience that were not so unique. I met adults deafened from all different causes. Some of them signed and others didn’t. Some could read lips, some couldn’t. The ones who didn’t sign or read lips used computerized notetaking, or pencil and paper, to get by. Some have had cochlear implants, others could not have them (such as the NF-2 cases), and others would not want them.

Another assumption that people make about deafened adults is that they all want to continue to live the exact same hearing lives that they lived all along. This is often the initial reaction, expecially in the sudden cases. But the successful adjustments are often those who give up this idea.

When I went in October 1990 to Chicago to attend the second international conference of deafened adults (ALDA—the Association of Late Deafened Adults), I was shocked to see 300 equally-shocked deafened adults. The first conference the previous year was attended by about 40 people, and I think everyone expected to see maybe 100 people at the reprise.

My first impression was that about 3/4 of these people were signing, at least ineptly. That is to say that the majority of people showed a willingness to do whatever they needed to get a message across, even if they were not fluent signers, they would give it a try. With about three years of signing under my belt, that made the conference very welcoming to me.

For the first time in my life, there no barriers to talking to anybody I wanted to talk to. Strange, though, there was nothing that I needed to say, because all of these people had been through the same experience as I had. In a group of six people, only one needed to talk because the other five could just say, me too, me too, … Meeting these people made me realize that I was not unique or defective. I was normal: a normal deafened person.

DEAFENED END

Another thing I noticed about the people at ALDA was that most of them were smiling. These were not grieving people, wishing to become hearing again. In the heart-to-heart support-group sessions, it was obvious that people were coping with a great deal of pain because of becoming deaf, but it seemed to me that most of the pain was from the way they were treated by other people at various stages. There was a lot of frustration trying to meet everyone’s expectation that your life would just resume the same way as before. One hearing life, minus the hearing.

Laurel Glass, a researcher into adult-onset hearing loss at the University of California, San Francisco, did a survey of people at the conference and asked what was the most helpful thing people did to cope with their deafness. The most common answers related to learning sign language and meeting other deaf people, both born deaf and deafened.

Yet most people there still lived and worked with hearing people. How can this be? Simply that having a deaf identity is a positive attitude. It is not an identity that something is missing.

Using an interpreter—no matter how well or mediocre you can sign—helps you to understand people in the hearing world much better and unobtrusively than trying to lipread during a meeting or class, for example.

People who can’t get work successfully with interpreters can demand captioning. In Massachusetts, it is now mandatory to provide real-time captioning for all federally funded services if a deaf person wants that instead of an interpreter. Not notetaking, but computer assisted real time court-reporter captioning.

And yet the system has two categories: deaf and hard of hearing. If you are not born deaf, then you must be hard of hearing, and automatically the system assumes that you prefer to learn to lipread and keep as much of your life unchanged as possible. After all, your family and friends won’t learn to sign. Who has any deaf friends when they first become deaf?

With assumptions like these, deafened people fall through the cracks. When you learn sign language, you meet people who do sign. They understand you a lot better than the people who are trying to convince you not to learn to sign because it is more convenient for them that you don’t change.

When you become deaf as an adult, you have already changed. Learning to sign is just a way to adapt to that change. I’m a great lipreader, but it’s too much stress for me to do everyone else’s communicating for them. Because I speak clearly for their convenience, it is easy for them to forget how to speak to make themselves understood. Signing is my way to declare that I am not hearing and I expect other people to do their share.

The theory that lipreading will preserve the old hearing lifestyle is based on hard of hearing experiences. Hard of hearing people can use amplification: hearing aids, assistive listening systems, volume control telephones—to supplement their lipreading. Deaf people cannot. Being able to hear in the past does not change that. Preferring not to become deaf does not change that.

Professionals and deafened people need to realize that deafened adults are deaf and not hard of hearing. For every deafened adult who succeeds just with lipreading, there are probably ten who feel like such failures that they don’t leave their homes. Because everyone is telling them that they should be able to do it, and they can’t. On top of the loss of the sense of hearing, this is unfair and unrealistic pressure from family, friends and professionals.

Sign language for me has been a gift. It gave me a way to remain active in the hearing world without being a constant interruption, a way to make my deafness visible better than my old red hearing aids ever did. For other people, one course in basic signing gives them a sense of communication by gesturing and a sense of being centred in a different world than before. That gives them the freedom to ask for and get captioning for their work in the hearing world.

The important quality is not whether it is captioning or an interpreter, but that you don’t have to do it all yourself just because some system thinks that it is more convenient that way. I know people whose lives have been saved by this very principle, and people who lost their lives because they didn’t get it in time. The time to recognize the special needs of deafened adults is now.

Defining deafness

By Dr. Kathryn Woodcock, 2001

People become deaf at different ages. Hearing loss can occur gradually or suddenly. It can be mild or moderate or it can be severe or profound. We’ll refer to mild or moderate (or monaural—one-sided—hearing loss as ‘hard of hearing’ and define that as outside of the scope of this page. We will not exclude anyone on the basis of age. You do not have to make it into adulthood with intact hearing to be “late” deafened. However, if you become deaf in early childhood and are educated as a deaf child, then we’ll define that as outside of the scope of this page. We will include those who grew up hard of hearing and lost hearing later, those who lost hearing early but were educated in the hearing mainstream pretty much untouched by concessions to deafness, and those who experienced all of their hearing loss in the teen years or later.

Defining who is “deaf enough” always gives me chest pain. For one thing, that’s a bludgeon the Deaf Culture uses to beat many deafened people with. Whether they intend to leave deafened people bleeding on the sidewalk outside the deaf club (figuratively), that is a frequent emotional consequence, and I personally reject contrived and imposed definitions of “deaf enough”. However, I remember when I was first really dealing with my hearing loss, I was asking my audiologist, my sign language teacher, my deaf friends, my family: “am I deaf?” I was searching for permission, because it was such a mysterious thing. I’d never been deaf so I wasn’t sure I could recognize it. There are a number of tests you might encounter to establish deafness.

Total silence

“You might be deaf” if what you hear is total silence. If you had neurofibromatosis-related surgery and the surgeon removed your auditory nerves, you’re probably not asking the same kind of questions I was. Go directly past all this soul searching.

Can’t hear on the phone

A number of people have proposed the telephone test as the litmus paper for deafness. Some deaf people can use a regular telephone in stilted and highly controlled ways so let’s not take “can’t hear on the phone” too literally. We’ll suggest that if you’re deaf, you can’t just pick up a ringing telephone with the confidence that you’ll understand the person who is calling. If you can dial your spouse’s office, hope like hell that no one else answers, and carry on a conversation successfully only by having your spouse paraphrase every sentence several times until you get it, answer only yes or no to questions you pose, or even use the spelling trick (see below), then you pass the telephone test. Don’t feel too guilty about using the phone and still saying you’re deaf.

The spelling trick is one that deafened people seem to spontaneously invent without discussing it among themselves. If you’ve never used it, here is how it works. Your spouse, let’s say, says a word, and (of course) you don’t get it. For example, s/he asks you to pick up (some two syllable word) on your way home from work. You ask your spouse to spell out this item to be picked up, not the regular way, like “pick up the b-a-b-y” (because you could mis-hear that as d-k-t-i and still be confused). The spelling trick involves spelling the mystery word “pick up the a-b, a, a-b, a-b-c-d-e-f-g-h-i-j-k-l-m-n-o-p-q-r-s-t-u-v-w-x-y”. In some conversations, all the words are mystery words. It gets worse if they have a lot of letters and make a lot of use of letters near the end of the alphabet. With any luck, you might recognize the word from the number of syllables plus the context, plus the first bit of the spelling. That’s with luck. It could have been b-r-a-t-w-u-r-s-t instead of b-a-b-y. I don’t think it makes you not-deaf if you can have an oral telephone conversation this way. It’s not like you’re going to phone up someone to ask for a job and say, “sorry I didn’t catch what you said. Could you repeat that by spelling each word from the beginning of the alphabet to each letter in sequence?” It might be an excellent way to get rid of telemarketers calling at dinnertime, however.

Rely on visual information in place of audible information

If you “feel” that you can hear but the sound disappears when you close your eyes, you’ve probably been lipreading more than you realized. I also have the inverse: if I can see it, I imagine it makes a sound. I can even “hear” insects crawling. When you’re visual, you understand television plots much better with captions displayed, and retain the name of a person you’ve just met when you can read a name tag instead of just an oral introduction. I was visual for 20 years before I figure I was deaf though. I recall annoying my Conversational French teacher in Grade 4, demanding her to spell fenêtre, an unlipreadable guttural word. Written French was supposed to be of no consequence in her quest to help us acquire the language naturally, but I needed it in writing to make sure I’d caught the word properly.

Don’t function in the hearing way

When I asked my audiologist if I was deaf, he said that there were no audiological thresholds to define deafness. His profession preferred functional definitions. Since I functioned in the hearing way (he observed), I would be called hard of hearing rather than deaf. I was sitting in his little airless booth, holding my breath to try to pluck pure tones and spondee words out of the headphones, and basically not doing well at all. I can hear a very loud 500Hz tone and that’s it for pure tones. We do some sentence tests through the window and I score perfect when I’m looking at him, sound or no sound. He expresses amazement that I pass for hearing as I do, yet because I don’t know any other way to function, he tells me I’m hard of hearing. A year later, I’ve learned enough sign language to take interpreters to business meetings and academic conferences, and I am stunned by how much more I am comprehending with a year’s sign language study compared to 20 years of lipreading experience.

Upon years of reflection, the functional definition strikes me as rather circular. The person needs to have the option before you can infer that they have chosen to function in a particular way. I functioned orally because that’s all I knew. And in retrospect, for a long time it was only half function, and half fakery. Sadly, in Canada, if you express yourself orally, you are hard of hearing, regardless of the need to lipread like the dickens for information reception. I continue to be able to speak and generate English concepts more eloquently than I can generate signs. It doesn’t mean I don’t prefer to receive information by signs, and even prefer American Sign Language over signed English. Although members of the community now recognize that deafened people exist in the spectrum, there is little overall recognition of the differences of deafened people and hard of hearing people. At least the American oralist movement has staked out a turf for “oral deaf” adults, so the concept has been prepared that people can speak and yet not be able to hear.

Auditory thresholds

I was taught as an ergonomist that the World Health Organization defined deafness in terms of the average hearing threshold at three frequencies, 500Hz, 1KHz, and 2KHz (because these three cover the main speech spectrum of 300–3000 Hz). You take the average of the quietest audible decibel level at each of these frequencies for each ear. The ear with the lowest number (smallest hearing loss) is called the Better Ear (how audist!), and the average decibel hearing loss at those three frequencies is the Better Ear Average. If your Better Ear Average is 90dB or more, you’re profoundly deaf, 70–90dB, you’re severly deaf, and onward up the chart to moderate and mild. Frankly, this calculation appeals to me more than the functional definition because it gave me permission to yield to the huge burden of managing a 90dB loss without modification from the Normal Hearing routine.

Auditory threshold is not necessarily the best test of deafness for everyone. My ability to pass for hearing right up to 90dB was enabled by my very slow rate of hearing loss and ability to hone my lipreading (and faking) skills over 20 years. Someone who is whacked on the head in a mugging and loses 65dB overnight may be so disrupted by the difference that oral functioning is out of the question.

Always been deaf, went to a deaf school, had deaf parents

Obviously, the majority of deafened people are not going to pass these traditional Deaf Culture tests. There are some people whose hereditary late-deafness has been dominant in their family tree, and there are some whose adolescent moderate hearing loss got them into a deaf and hard of hearing classroom, but most deafened people are at a disadvantage in these ‘seniority-based’ definitions. This is unfortunate in the role-model department, because deafened people wake up in the morning just as deaf as those who have been deaf longer, and yet because of the opportunities they had pre-deafness, they get dressed and go to the office to do pretty impressive jobs. If they can continue doing those jobs, it seems to prove that people who have been deaf longer could also do those jobs. But as long as people are lobbing not-deaf-enough spitballs across the aisle, the great potential role-model collaboration isn’t likely to happen.

It seems that this test is applied primarily to the living. Dead deafened people automatically become deaf enough, such as Juliette Gordon Low (Girl Scouts founder), musician Beethoven (also see this), inventor Edison, etc.

Hearing impaired

I don’t want to get into any fights about this. Don’t even send me email if you disagree. Just figure I am an idiot if you want, and go to another site. The conclusion I have reached introspectively, retrospectively, and observationally, is that “hearing impaired” is the term used by people who don’t want to deal with their deafness or hearing loss, and also by people who want to dominate people with deafness or hearing loss. I have no quarrel with the term “hearing impairment” as a quality that is possessed by someone. I prefer “deafness” and “hearing loss” but I can live with “hearing impairment”. People who say they are hearing-impaired tend to be afraid to say they are deaf, or people who are hard of hearing but don’t like the term. (What’s not to like? You can hear but it’s hard.) I don’t like the concatenation of the verb “to be” with the term “impaired”: broken, defective, inadequate. If I’m saying what I “am”, I’m going to say I AM an engineer, I AM a mother, I AM a professor. I am not going to say I AM something-impaired or accentuate what I am not when I am affirmatively so many things.

People who are not deaf or hard of hearing who use the term normally use it to subsume both audiological populations under the same umbrella, usually just for convenience in expression (four syllables for hearing impaired, compared to six for deaf-and-hard-of-hearing). This usage is ignorant or uncaring that the two groups differ in almost every respect except the anatomical location of their difference from ‘normal’, reducing us to one body part. These are invariably the same people who talk about “emphasize the ability not the disability”, in other words the euphemism-meisters. I don’t want to debate this; if you don’t like it, change the channel. It’s just my opinion.

I used (remote) Real-Time Reporting to survive my Ph.D. research.

By. Dr. Kathryn Woodcock, 2001Graphic shows how remote real-time reporting bridged communication.

For my PhD research, I struggled for months trying to think of ways to avoid a fundamental barrier: I am deaf and I was not doing deaf-related research, as many deaf researchers are. Even worse, I was not doing research with computer models, fruit flies, rats, chemicals in test tubes, machines, or structures. I was doing ergonomic research that needed to examine human reasoning, knowledge, and problem solving. I tried to think of many other ways to look at problems but I kept returning to the same types of questions that interested me. There was no way around it. I needed to interview people—hearing, non-signing people—and I needed to use naturalistic, or qualitative, methods. I sign and I normally prefer to use that method for access to ordinary meetings. It is 100 times more reliable than lipreading, and results in 1/100 of the fatigue. However, this type of research requires accurate and complete notes, and sign language reception monopolizes vision. Using sign language interpreters in my interviews would have enabled me to understand the interview concurrently but not to take reliable and thorough notes. The chosen alternative was to use a real-time reporter.

In real-time reporting (sometimes called CART, for computer-assisted real-time translation), a specially-trained and prepared reporter transcribes the interview as it is conducted, using a stenotype machine. The proceedings are recorded by entering a chord (key combination) for each syllable. Real-time reporters have a background in court stenography. Ordinarily, homonyms such as “to/two/too” would be keyed alike in the courtroom and deciphered from context in preparing the court transcript in a subsequent operation. Because these distinctions must be made in real time to make the transcript useful to the client, real-time reporters have supplemented court-reporting training with additional training and experience to key homonyms distinctly and eliminate these so-called ‘conflicts’. Computerized translation is performed from “steno-language” using a prepared English vocabulary, with the interview transcript displayed on a video monitor in real time. A delay of only seconds is typical with a skilled reporter, with an accuracy rate in excess of 95%. (‘Inaccuracies’ in this context are normally words for which the phonetic input fails to find a match in the English vocabulary, possibly because it is a technical term, or one of the syllables was mis-keyed. It is usually possible to decipher the intended words without great difficulty if the reporter has adequate skill.)

Normally, real-time transcription is used for the closed-captioning of live television events or for the display of transcription on a monitor or projection screen for a meeting or conference presentation, or similar function. In the present instance, there were concerns that the presence of the reporter would be intrusive, as well as space-consuming in the small interview location. The reporter could be set up in an adjacent lab, but this approach would require incurring travel expenses for several interview periods. Conserving travel expenses and paid idle time for the reporters would have imposed additional restrictions on possible times for interviews, when maximizing the number of interviewees dictated being as flexible as possible for their schedules.

The solution was found in telecommunications. While most real-time television captioning is performed in specially-equipped studios from network feeds and satellite transmission, telephone lines are increasingly used as captioning of local broadcasts becomes more common but local reporters are unavailable. By connecting the reporter’s remote site to the interview site through two telephone lines, personal computers with modems and software, and an enhanced microphone in the interview site, the reporter could be situated anywhere.

All roads lead to ALDA

By Dr. Kathryn Woodcock, 2001

At ALDAcon II, my first contact with Association of Late-Deafened Adults (ALDA) up-close-and-personal, I met many people and swapped stories and feelings about becoming deaf. It was heartwarming, the many shared feelings under all of the stories. But there wasn’t an infinite number of stories. In fact, I kept hearing diverse ALDAns tell just a few life stories over and over. It was particularly eerie that some of them were telling mine, with just a few geographical revisions!

I’ve done some superficial looking to see if there were any accepted classifications and descriptions of hearing loss etiologies, but most of the medical books about hearing loss are full of bloody pictures of internal parts (presumably ears) and words telling doctors how to fix it. Audiology books seemed to focus on testing and aural rehabilitation (staying in the hearing world come hell or high water), on the trickery involved in getting a reluctant patient to use a hearing aid, and on generally milder hearing losses than we have. These didn’t provide what I needed for descriptive purposes, so I decided to make up categories based on the stories ALDAns have told me. I am no anthropologist, but I ended with four broad stories: medicalsurgicaltraumatic, and progressive hearing losses.

Medical

Medical hearing losses are those resulting from chronic and acute illnesses such as Menière’s syndrome, reactions to ototoxic medications, and The Virus. Now, we don’t know what this virus is, but a friend of mine (a Virus guy himself) likes to say, “whenever doctors don’t know what something is, it’s a virus”. Sometimes medical losses are overnight losses, but some people with medical losses became deaf more gradually, say, over five or ten years. But that is not as slow as the typical progressive-loss case, and the onset can usually be linked to some illness. Many of these people tell the tale of being so very sick that deafness was the least of the problems at the time. Especially in the view of the doctors. They tell of having the deafness given short shrift by the caregivers whose training better equipped them to deal with the illness and not with the deaf patient. Their first deaf experience might have been something like a nurse towering over them saying, “What are you complaining about not understanding me for? You’re lucky to be alive.” (Of course, with no hearing and no lipreading experience, the chances of understanding any more than the hostile facial expression are slim.)

Medical losses may not be profound, and the medically deafened person may have had conflicts with professionals and others who believe that they should be able to function as well as a born-hard-of-hearing person with the same audiogram. But lack of lipreading and coping experience may make the residual hearing functionally useless. The perceived marked contrast with one’s former hearing makes it easy, though not pleasant, to realize the need to acquire deaf tools: caption decoder, TTY, etc.

Besides hearing loss, some conditions like Menière’s have additional symptoms, such as dizziness, which further interfere with normal activities of living: walking, working, driving.

Surgical

Surgical losses are those requiring removal of tumors on the auditory nerves: neurofibromatosis type-2 (NF-2) and bilateral acoustic neuromas. Usually, these people know going into the hospital that they will be deaf when they come out. Forewarned does not necessarily mean forearmed, though, either in the case of the patient or the hospital. Although you’d think that they would get some mental health preparation and ample technical support with the luxury of advance warning, it seems that the general approach is not much better than for those struck by The Virus. On the same basis that born-deaf patients may have sign language interpreters in the hospital, don’t you think that a clinic that does this sort of surgery should have a print interpreter (real-time captioning) standing by post-operatively to assist the patient to communicate?

Severing the auditory nerve creates an absolute silent world, which may not be as annoying as dealing with people who persist in providing information on this miraculous Bionic Ear (cochlear implant) that they just read about in the paper. Bionic ears have nothing to offer a severed auditory nerve.

In addition to deafness, NF-2 requires coping with numerous operations.

Traumatic

Traumatic losses are incurred in a wide variety of exciting and adventurous ways, from motorcycle riding to settling an argument in the alley behind a bar. Again, the “you’re-lucky-to-be-alive” argument is used to deflect criticisms that the medical environment should have more assistance to offer. Rather than assist the patient to function without hearing, acceptance of deafness may be discouraged because deafness is temporary in some trauma cases. False hopes, nurtured by the medical experts, don’t evaporate painlessly. Wouldn’t you think that it would be easier to get used to having your hearing back? The long-term therapy and treatment for any other concurrent injuries can be more difficult with new deafness.

Like many accidents, deafness from traumatic causes can be overlaid with a lot of “if only’s”: “if only I hadn’t been there”, “if only I had taken a cab”, etc. The anniversary of the event can revive the sense of loss.

Progressive

Progressive losses sometimes result from aging—though simple presbycusis is usually a milder loss—and from overexposure to excessive noise. Although noise cases seem mostly to be mild or moderate, even a small proportion of these equates to plenty of cases of occupational noise resulting in deafness. As well, I know two deafened adults whose milder medical hearing loss was pushed over the brink into deafness by occupational noise exposure. There is a form of hereditary hearing loss that is progressive. Then there is the idiopathic progressive loss. The medical term “idiopathic” does not mean that the doctor is a pathetic idiot, though you may be forgiven for thinking so as you’re pushed out the door to make room for a case he can understand and/or actually do something about. Idiopathic refers to “no known cause”. Maybe the idiopathic cases are genetic, but all of the cases in previous generations had died of other causes before becoming deaf. Or your mother brought home the wrong baby from the hospital (I wonder about mine).

Generalizing a bit about the rate of its progression, it seems that by the teen years the loss is mild or moderate, becoming severe to profound through the twenties and thirties, though some environmental noise perception can linger awhile. In contrast to the other ways of becoming deaf, the person with a progressive loss may not strongly identify with “hearing” people (inexplicably always feeling outside the hearing world), and may develop satisfactory deaf functional skills (i.e. elaborate ways of faking comprehension), but has no discernable prompt to change their self-image from hearing to deaf.

I didn’t make up this classification to factionalize ALDAns. Indeed, I think we can all feel linked even though we may have taken different roads to get here. But in my own deafened support group, everyone else was an overnighter, coping with new ways of functioning, mourning absent music. They were sure they were deaf, and didn’t know how to cope; I knew how to function but wasn’t sure I was deaf. In common, we had feelings and frustrations about situations in the hearing world and our homes, but it wasn’t until I met people with similar progressive losses at ALDAcon that I really felt “normal”: not only our present feelings but also our memories were identical. If you haven’t found exactly the help you’re looking for from ALDA, maybe you haven’t yet met someone who traveled the same road to get here.

On a lighter note, maybe etiologies would be like horoscope signs if ALDA ran a singles bar. “Medical—right? I knew it!” “I’m a surgical guy myself, on the cusp of NF-2.” “Bilateral progressive seeks same.” “Traumatic—fractured skull with off-road vehicle ascending.” Whatever works for you!

This article previously appeared with my permission in The 1991 ALDA Reader.