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.


Sign language works like a charm

By Dr. Kathryn Woodcock, 2002

For years I mocked those who asked if I could sign. Didn’t know any deaf people, did I? (No, I didn’t even know myself then.) Then came the insecurity, the fear of failing. Going as a stranger to the deaf club with halting fluency at both the uptake and expression, and knowing that the culturally Deaf come second only to the French in linguisitic haughtiness.
Insecurity about communication had become a perpetual state for me. Never knowing if I would be able to pull off another lipreading trick, either avoiding or dominating interaction with hearing people. Now here I was acquiring a whole new language in which to be insecure.

One unusual factor added to my insecurity, and that was the travelling I did in my professional life and as an ALDAn enthusiastically committed to the ALDAcon scene, during the years I was learning to sign. I would master a sign at home and get midway through ALDAcon before I would realize that half the folks think I am talking about my honeymoon each time I mentioned the hotel. My insecurities would get the better of me, and I would go home, having ‘corrected’ my sign, only to find every single soul back home making hotel the same way I had in the first place. I would try to remember the conversion formulas. When I say boss, you see government; you say boss, I see coach. When I rebuilt my confidence and tried to change my signs, like my currency, at the border, I was stymied again when I travelled to Manitoba and found nobody knew the United Way sign, so clever and obvious at home, and that (aboriginal) Indian is rotated 90° from Ontario’s sign. Likewise, I would drop the Torontonian sign for early and make the sign on my nose, like in Chicago, but in Boston, they would look at me like, “What?”. I would learn the sign for birthday in Massachusetts, and get blank looks in Illinois. Cochlear implant, Hallowe’en, … every time I turned around, it seemed that a sign I ‘had down’ was an illusion.

Still, it became somewhat predictable, that there would be vocabulary differences, and it stopped making me insecure. Now, I’m not always immediately understood but I know from experience that I can clear things up, which is a lot more optimistic than I feel about my lipreading. I am not so quick to believe my signs are wrong any more, and my vocabulary has begun to congeal.

My sign vocabulary is like a charm bracelet, with the signs I use for particular concepts —like little semantic souvenirs—tending to correspond to the customary sign used wherever I was when I learned it. Like a charm bracelet, it makes an interesting conversation piece, and thanks to signing I am no longer petrified at the thought of conversation.

My family signs boring

By Dr. Kathryn Woodcock, 2002

This is not to say they sign boringly. No, they typically sign with great gusto, with the sort of emphasis one associates with “Not!!” or for those of us who can’t quite relate to Wayne and Garth, simply think back to “You bet your sweet bippy!!” What I mean is, the only sign they know is BORING.

I don’t exactly know how it came about that this is the only sign they have absorbed. For about five years, I have signed around the house whenever I have had a deaf friend with me. They can’t retain or recognize the sign for TEA or POP, the sign for DINNER, or BATHROOM, and heaven knows they would be blown away with a sentence, even in Signed Exact English.

The reasons vary. Mother finds the alphabet too hard to form on her arthritic hands and is paralysed by the idea of having to remember all the signs. Father is fascinated by the theory of sign language, positing a similarity to the ideographic written languages of China. My brother “will probably take a course, eventually” and my sister, … Well, there’s a million excuses, isn’t there? Basically, they have never been put to a real test, because I have been taking up the slack, lipreading, letting events just happen around me, and bringing my own signing companion to family events so that at least I can amuse myself.

I do myself a bit of a disservice, I think. Invariably, I am introduced to their friends and acquaintances with “Kathryn is deaf, but if you look right at her, she can lipread you.” This is a vast improvement over “Kathryn has a hearing problem,“ the introduction of my youth, and is preferable to leaving the explanation of my inevitable non-comprehension to me. But it is false advertising.

I cannot always lipread them if they look right at me. They have walrus moustaches, buck teeth, thick accents, cigarettes and gum. They fidget with their hands over their mouths, and grin at me, as if a grin shows suitable sympathy for the pathetic lot of deaf people, or they nod as they talk, as if to cue me to the response they expect. Give up. I couldn’t lipread them if they were mouthing the answer to the $64,000 question. Nothing I say or do gets this across to the family, even when they end up repeating stuff for me. I should be proud that the people who have known me so long seem to think I have superhuman powers.

Frustrated as I am with this situation, nothing I have done over the past five years of signing or decades of hit-and-miss lipreading has penetrated this perception that I can understand anything I put my mind to. Lacking any other strategies, I have just been sitting quietly back, and to my amazement, an interesting phenomenon is unfolding. My sister has a 2½ year old daughter, the first of Woodcock, The Next Generation. What has transpired is evolution at its best. Where her elders had failed, this little genius has managed to learn food signs, animal names, family relationship words, and assorted other signs. Up till now, it’s mostly been just naming things with their signs, but just last week, as she was shovelling popcorn into her little mouth by the little fistful, I signed to her with a conspiratorial smile, “you piggy.” Her eyes lit up as comprehension dawned: You can make sentences with these things! Quickly she signed back “no, you piggy!!” Now she’s picking up the concept of the two-fingers-as-legs classifier. It’s like a bike down a hill now. Now my sister knows most of the signs my niece knows, because they watch the Sign Me a Story video together. My niece shows her daddy and Nanny and Grandpa and they’re soaking them up too. What I couldn’t do, my niece is doing for me— teaching my family signs. Give it another ten years…

Don’t sell me short

By Dr. Kathryn Woodcock

The other day, I encountered a peddler in my local fast food emporium. He wasn’t peddling alphabet cards, this one. He had handmade keychains. Like, who goes around with a bunch of loose keys in the pocket? So why would anyone buy one from a peddler, except out of sympathy. They were accompanied by a card proclaiming the peddler to be deaf and the keychains his own handiwork.

I was sitting there by myself, finishing my pop and reading the sports page, when one of the cards was thrust in my face. I looked at it for a few seconds, then made eye contact with the peddler. “You deaf?” I signed. Often, peddlers are hearing people banking on the public’s gullibility and pity. Sign to one of these, and he will beat a hasty retreat. Not this one. “Yes, you?” he signed back. Then we proceeded to run through the customary deaf culture conversational-opener script: where are you from, where did you go to school, do you go to the deaf club, who else might one of you know that the other might know. The keychains had been tucked away. As I began to take longing glances at my newspaper, we concluded our discussion, and he proceeded to another table to offer his trinkets. Happily, however, the manager soon appeared, with a note written on a piece of paper, asking the peddler to leave, in accordance with store policy. I was relieved. I didn’t want people to think I endorsed his peddling.

But aside from finding out the imposters, I have long since given up arguing with peddlers about peddling. They always feel supremely entitled to it. They would “rather peddle than be on welfare.” No matter that welfare is a legitimate safety net which, coupled with vocational rehabilitation and counselling, can help people get back on their feet. Furthermore, when a peddler begs, the beggee only knows that their money is desired, not that it is needed. I have heard of networks of ‘deaf’ peddlers in some cities, where the begging is just a cottage industry. At least Welfare attempts to verify financial need prior to making handouts.

No sooner did I arrive home when the local paper arrived with a letter to the editor about this guy. A local couple asserted that ejecting him from a restaurant was “not very nice”. They would henceforth take their burger business elsewhere. They assured the peddler that all people were not as mean-spirited as the restaurant manager. They asserted that everyone has the obligation to help the “less fortunate” to “better themselves” and “improve their self-esteem”. They wondered “where was the harm?”

At this point, I flipped my lid. Labelling us less-fortunate is exactly the kind of attitude that oppresses us. Flogging keychains in burger joints is “bettering ourselves”? Gee—I was working on a Ph.D., but maybe I will just whip up some bookmarks and head on down to Burger King. Where is the harm? As I sit there reading the business section, or revising a section of my dissertation, who notices that I am deaf? But there goes the peddler, drawing attention to himself. When I go to look for a job, and people know that I am deaf, the image of the peddler will be the salient deaf image in their minds. Which deaf person’s self-esteem is more important? Mine plummeted the instant the peddler walked in and started to flash his trinkets around.

I immediately faxed a letter to the editor in response, published a few days later, making many of these points and encouraging people to contact the Hearing Society to find out how to direct their financial support to improving access, not hand it out a loonie (Canadian dollar) at a time in fast food restaurants. Several employees at both local McDonald’s commented to me about the letter. I think they needed the moral support for their policy after the short-sighted “not nice” letter appeared. Even more so, I think they might have been concerned about throwing out a friend of mine (I am avery regular patron).

That is exactly the problem. People see deaf people as all one lot. If one is a peddler, all are peddlers. If one is an unfortunate, dependent innocent, then all are. These kinds of limits on expectations keep deaf people from aspiration, opportunity, and achievement.

I’ve talked with many ALDAns who have said that their earliest and sometimes only memory of meeting a deaf person was a of a peddler, and this was a depressing recollection when later confronting their own deafness. Do we consciously or unconsciously fear that deafness means we will plummet to passing out alphabet cards in the mall? Does fear of becoming like that prevent any of us from learning to sign? For many years during my progressive hearing loss, I thought deafness was beneath me. Who would I talk with? I don’t know any of those people. Look how I was achieving! Not like them. How did I know about them? From seeing peddlers. Luckily I did meet deaf people who were professionals, like me, and learned that knowing how to fingerspell and selling fingerspelling cards were not cause and effect. And of course I am now proud to be able to muster fairly fluent ASL when called upon it to defend the honor of deafness in challenging peddlers on my fast food turf.

The second-last deaf peddler I passed was a very dirty man sitting on the sidewalk on Yonge Street in Toronto, near the corner where all the tourists go. He had a hat in front of him and a small hand-lettered notice. “Lost my hearing in 1990 and cannot work.” If this is true, of course, it is tragic. Tragic not that he became deaf, although nobody is really ever prepared and few lives are made simpler and easier by it, but tragic that he could not see a future with deafness. Did past encounters with peddlers lead him to conclude that this was his deafened fate? I didn’t challenge that peddler in sign, of course.

The “went deaf in ’90” claim is the perfect dodge for “why don’t you sign, then?” questions. If I had thought he had an address, I would have sent that man an ALDA News subscription. There is no need to give up. ALDAns learn that deafness is often a practical frustration, but once we get through adjusting to deafness and accepting it, we can do anything except hear. We don’t need peddlers selling us short.