Terms of En-deaf-ment

When you lose your hearing, one of the first problems you must learn to deal with is telling complete strangers all the time, everywhere you go, in every new situation, that you cannot hear. For example, today before 11:00am, I told at least six people I had a hearing loss because my son needed a surgical procedure. He's an adult, but since I am his mother and had to wait for him in the waiting room, I had to tell office staff, his doctor, the anesthesiologist and two nurses. Additionally I had to tell someone when I got a latte.

Unlike blind people or the disabled where there's always some kind of obvious clue-- crutches, dark glasses, wheelchair, cane,. . .with hearing loss there isn't anything too unusual about my outward appearance. Everyone assumes I can hear unless I tell them otherwise. I have learned from experience it's best to get this out of the way first thing. I would rather someone know I can't hear well than having them think I'm stupid or not paying attention.

After informing someone of my hearing loss, then I brace for the reaction, which can be anywhere from "How the FUCK am I supposed to talk to you?!" (Yeah -- someone actually said that-- more than once!) to gushing sympathy --"Oh you poor thing, I'm soooo sorry." Mostly, it's somewhere in between. Generally, people are pretty good about it. I just want acknowledgement that necessary accommodations may need to be made, not sympathy and certainly not anger. What I usually want is for you to look at me, take your hand away from your mouth, stop chewing your gum and biting your nails, or whatever other annoying oral habits you may have, so that I can read your lips.

I also hate it when people assume they know everything about me because they've had previous experience with another deaf or hard-of-hearing person. I do not need you to tell me about an audiologist or doctor who will help me. You don't know anything about me, or my hearing problem. I realize you think very highly of the doctor that helped your grandma, but not all hearing problems are alike. I haven't asked your advice, but let me assure you I've researched my hearing loss thoroughly and I see an internationally known specialist downtown-- probably one of the best on on the west coast. I think I have it covered--thanks. We aren't friends. You're a stranger.

Recently on one of my lists, the question of labels came up again. What do you tell people, so they understand you can't hear? This can be awkward for many of us. If you're not culturally Deaf, you basically have three choices. The Deaf make distinctions between D-deaf and d-deaf (meaning those who are deaf and also speak orally.)

1) d-deaf. The rest of the population doesn't have a clue that some deaf people speak. To inform them of your deafness may confuse them. However in my opinion this is the most correct and effective term, especially if your deafness is severe-profound in the speech ranges-- which mine is. The deaf word gets their attention. You can use a modifier, such as saying "partially deaf" which one of my list-members cleverly thought up. For the past four years, I've always used "practically deaf" or "late-deafened"-- a term coined by the Association of Late-Deafened Adults (ALDA). These are people who became deaf post-lingually like me. Incidentally, 70% of all deaf people become deaf post-lingually.

I looked up the word 'deaf' in the Websters on-line Dictionary. Here's the definition below.

"deaf /dɛf/ Pronunciation Key - Show Spelled Pronunciation[def] Pronunciation Key - Show IPA Pronunciation adjective, -er, -est, noun
–adjective
1.
partially or wholly lacking or deprived of the sense of hearing; unable to hear.
2.
refusing to listen, heed, or be persuaded; unreasonable or unyielding: deaf to all advice. –noun
3.
(used with a plural verb) deaf persons collectively (usually prec. by the).
[Origin: bef. 900; ME deef, OE déaf; c. MLG dōf, D doof, OHG toub]"

Still, there can be drawbacks to using the word deaf. When I inform people I'm deaf, they often assume I speak sign language. Sometimes they even compliment me on my ability to speak orally. I feel like complimenting them back--and sometimes I do --with a wink. I actually do use a little sign language, but I'm far from fluent. Mostly, when I'm in a situation with strangers I don't feel like giving a lecture on deafness, why I speak so well, or pointing out how many deaf people actually DO speak orally.

The other two options for informing people and labeling your hearing loss are not without their problems--

2) Hard-of-hearing. What the hell does that mean? Why do the other disabilities not have a similar distinction? Hard-of-seeing as opposed to blindness, or Hard-of-walking? Let's call a spade a spade. If you cannot hear well, you are deaf. I do not understand why people feel it makes a big difference that one person can hear better than another when it is a fact all people with hearing loss struggle. Take the blind. They are ALL called blind, even though some of them can read large print books, and see well enough to walk without a cane. We have handicapped parking at work and a special door for them to walk through. It doesn't matter if they're in a wheelchair, walker or use crutches. They are ALL considered handicapped. We do not call some of them "hard-of-walking" and expect more of them because they really aren't that handicapped. Finally, I should point out it is a fact that those who are culturally deaf and do not speak, frequently have better hearing than those who are late-deafened or hard-of-hearing who DO speak. We are ALL deaf! So I personally feel the term hard-of-hearing is a very misleading designation that causes a schism within the Deaf/deaf community.

3) Hearing-impaired. This is equally vague, and also quite negative. I hate this term. I used to use it because someone told me it was politically correct. Then one day while skiing, I started feeling really good about myself that I had such good health, and I didn't feel at all impaired. That very moment I saw a man whiz by me skiing with no legs. He didn't seem at all impaired either. So I stopped using that term. I do not consider myself impaired. I am challenged in some situations--yes. I am proud of the ways I meet these challenges on a daily basis. I don't consider myself "impaired."

Journey Into Deafness

I was probably no older than three the first time I saw someone wearing hearing aids. It was, for some reason, one of those unexplained lucid moments I remember so clearly as if it happened just recently. Even now the details are so clear I can see the colors of the walls, faces, the checker's hands ringing up items. It seems as if I was supposed to remember.

I was sitting in a shopping cart at the A&P. Mama and I had pulled up at a check-out station behind another woman and her son. I watched the checker for awhile, mama licking her stamp book, then noticed the little boy standing ahead of us quietly. He was wearing some sort of contraption with big black things over his ears. I had seen something like this in the winter--ear muffs. But it was summer and these ear things were not knitted ear muffs. They were made of metal and rubber, and had electrical wiring. I asked mama, maybe in too loud of a voice, what those things were on that boy's ears. I could tell at once I had embarrassed her. She shushed me, then explained quietly he could not hear well, so he had to wear something called hearing aids. Then she smiled apologetically to the other mother.

Right then a feeling came over me that I would someday be just like that boy. So I told my mama. She laughed and said, "No, your hearing is just fine. You will never have to wear hearing aids like him." Though I knew as she said this she was wrong, I kept it to myself. I wanted to believe her.

I think this was my first ever premonition. I've had a few others since. Always I remember them in sharp detail, just like I remember this one so vividly. It wasn't long after that I came down with the measles, though my hearing loss wasn't immediately noticeable. In fact it wasn't even diagnosed until decades later. However, the official word is the measles did my hearing in. Who knows? I could have contracted it right off that shopping cart-- or maybe not. The sickness and what came after is much more muddled in my memory.

I am not exactly sure when I first noticed the hearing loss. When you are young, you often assume others are exactly like you. Looking back I realize I had lots of problems. Ear pressure caused tremendous pain while swimming under water, or driving over mountain passes. I always had tinnitus (ringing in the ears) off and on. None of the schools I went to performed routine hearing screenings. As a teenager, I began to notice a plugged ear feeling and the tinnitus increased.

At nineteen the tinnitus got so bad I decided to see a doctor, and that was when my hearing loss was first discovered. At that time my audiogram made a cookie bite pattern in the speech ranges. My doctor suggested the hearing loss might be "allergy related." I swear most every incurable ailment was blamed on allergies back in the 70s. I pursued allergy treatments for awhile. When it became clear they didn't work, and my hearing continued to decline, I gave up. My hearing has continued to decline into what is known as a "ski-slope" loss--profound in the speech tones-- though my low frequencies are still good.

Everyone wore surgical masks in the dental office where I worked when I was in my early twenties. So I switched to a desk job, which was easier than admitting I couldn't understand people with their lips covered. Then I realized I couldn't hear on the phone well. Years went by before I conceded that I needed to do something. By this time I had a small baby, and avoided most social situations because of the hearing difficulties. I couldn't hear movies. TV Captioning hadn't been invented yet, and phone communication had become next to impossible.

Buying my first pair of hearing aids in my twenties was bittersweet. At last I could hear-- somewhat. Hearing aids are ONLY aids, they are not like glasses in that they do not provide a perfect correction. There is still a lot of distortion, missing sound and amplified sound where you do not need it. Hearing aids are more comparable to prosthetic limbs than glasses. Still, I was most amazed by my baby son's sweet cooing voice. I was hearing sounds I had never heard. That was miraculous!

Then my audiologist handed me a maintenance pamphlet with illustrations of gray-haired, seventy-year-old grandparents on the front, and I feel apart. We all know the stereotype of hearing loss as an "old person's" complaint, but until that point I tried to keep an open mind. Of course, I reasoned, if I had hearing loss, then lots of other young people must have hearing loss too. So I guess I expected more age diversity on the pamphlet. How naive of me! When I saw everyone on the front cover of that pamphlet portrayed in deep wrinkles and gray hair, that's when I realized what an anomaly I was. I cried all the way home. I didn't know one person with hearing aids. I didn't even know any people my parents age with hearing aids.

Emotionally I started crumbling and continued to crumble for the next fifteen years or so. On the outside I managed, I think, but inside I grieved. I didn't know where to turn and there wasn't much support. I felt so isolated. While my friends talked about breast-feeding, childbirth, home decorating and new jobs, I needed someone to talk with about audiologists, ear mold discomfort, parenting with hearing loss, new hearing aid technology, on the job accommodations, and a whole host of other concerns I had about my future with an incurable idiopathic progressive hearing loss. This was, after all, the early 80s. Digital hearing aids had not been invented yet. No one had even heard of cochlear implants. The Hearing Loss Association of America (HLA--formerly SHHH) was in its infancy, and full of retired grandparents who weren't parenting or working. The local chapter was far away and they usually held their meetings at inconvenient times for young people. I didn't fit in. The American Disabilities Act didn't exist yet.

To make matters worse, my hearing was declining at a rapid rate and no one knew why or how to stop it, or how bad it was going to get. Was I going to be deaf by age fifty? No one knew. Just as an example to show how out of touch most professionals were and still are, the first time I went to a psychologist to talk about the support I needed, she suggested I get a job. I look back on this and shake my head. I was grieving. I needed accommodations in order to get a job. I needed a LOT of support. The last thing I needed was someone shrugging her shoulders and telling me to go back to work.

This isn't the first time a doctor has overlooked my hearing loss. Even recently my family doctor, who has been informed numerous times, failed to recognize the impact it might have on other health issues. Just the daily stress of speech reading constantly, and filling in the blanks, guessing, and not being able to communicate effectively with 90% of the population every day, all day long---it's the little things that add up to a huge stress factor. True, she doesn't have a copy of my audiogram. I've made a note to have it sent to her, because every time I go there I have to remind the office staff I'm deaf.

Anyway it has been more than twenty years since that first ineffective series of visits to the psychologist who suggested I "get a job." I would like to take that young woman (me) by the hand to guide her through this awful mess. I wish I could go back in time and tell her it's all going to be OK. Technology is going to get better, she will discover ways to communicate on the phone and without a phone. Computers will be invented and deaf people will "talk" via videophones, email, IM, and phones with words running across a screen. TVs will all be captioned and even some movie theaters will offer it too. There will be laws that employers must accommodate us, and she will eventually get a job with accommodations that suits her. HLA will thrive and become powerful and many young people will get involved. Other support groups will pop up--the Assoc of Late-Deafened Adults (ALDA) and tons of on-line support groups. Some people still don't know where to turn. So I'm advocating. I can't go back in time, but it does me good to help others.

My deaf adventure is the main point of this blog, but since deafness doesn't define me or anyone, there will be lots of other posts in here as well-- just on life--through my eyes-- because blogging is my therapy. If you are losing your hearing or you know someone who is and you find anything in here helpful, then that's GREAT!