Note: Be patient with this, please… it goes somewhere, and all I’m doing with this is setting the stage. It’s for a good cause.
Ever see the movie? Children of a Lesser God? The one that brought Marlee Maitlin to the forefront as being (1) deaf, (2) a darned good actress, and (3) pretty damn cute. I was having fun with #3 there. She’s pretty/cute and smart, and who I consider to be a very inspirational person.
It’s an interesting world, the deaf experience. I only have a foot in it and lightly so at that. I’m lucky. I read lips. I have enough hearing that I’ll always be considered an outsider to deaf culture but enough of a loss that the audiologist was surprised that I functioned as I do in society w/o hearing aids. I also am a fervent supporter of the deaf.
“Hey,” I told her, “it’s a quiet existence, and most times I like it. 90% of what people have to say is BS anyway.” That really pissed the audiologist off.
Source: http://www.freedomscope.com
But then, she has all her hearing. There’s a great documentary of sorts out there called Sound and Fury. It documents several families on both sides of the deaf/hearing chasm – for there is a chasm, and it is hard if not impossible to see all the way across from either side. Here’s the description of the docu:
SOUND AND FURY documents one family’s struggle over whether or not to provide two deaf children with cochlear implants, devices that can stimulate hearing. As the Artinians of Long Island, New York debate what is the right choice for the two deaf cousins, Heather, 6, and Peter, 1 1/2, viewers are introduced to one of the most controversial issues affecting the deaf community today. Cochlear implants may provide easier access to the hearing world, but what do the devices mean for a person’s sense of identity with deaf culture? Can durable bridges be built between the deaf and hearing worlds?
What most folks never realize is how hard it is to follow a conversation with more than 2 or 3 people in a group if you are reading lips. You get tired. Imagine thinking hard for four or five hours straight and no breaks. You get fuzzy and tired of thinking, and there is a part of you that wants to turn it off. That happens in under an hour for a lip-reader. There are facial nuances (eyes, mouth, head tilt, nose), there’s the lips (putting movements together and processing), body language, visual aids (powerpoint, drawings, whatever), following who is talking, and then, on top of all that, processing the discussion and formulating your response or input. This all has to be done real-time with constant re-evaluation of what the context of the conversation is, so the proper interpretation and assumptions can be made.
Lord help you if you stumble. It is best visualized as a train wreck of the thought processes. But you gotta keep up, regardless.
And the really maddening part is you are considered stupid because it is hard to keep up. I remember being called retarded many times in school or weird for responding with something that was out-of-context. I score quite high on an IQ profile and I’m anything but slow. Is it any wonder so many deaf people are angry or bitter? Lose your hearing and try to get a good job. A good friend of mine could tell you stories…
Life is harder. Hearing your alarm clock? Hearing a phone? Will the phone be loud enough to hear the conversation even if you have some hearing? Does the facility have TTY/TDD? Does the movie theater have CC at the bottom of the screen? Some do, most do not. Forget going to see a play unless you get excited about 3 hours of utter boredom. Got a baby? How are you going to hear it if you can’t hear? Did you hear a sound or not? What is that smell? Smoke? Did the timer just go off on the stove? Driving is an experience. It means that a conversation that someone else takes for granted is now a very dangerous distraction for you, the driver. You can’t hear the nurse call your name at the doctor’s office. And even if you know the nurse has called you, did you get the name right? Lipreading isn’t perfect – try to plug your ears and have somebody say “buy my pie” (in any word order) and see if you can tell what was what. Good luck. People are not always helpful to the deaf. Some are outright mean to them. Some employers will turn you away w/o an apology regardless of how illegal it is. I don’t have it as bad as all of that. As I said, I’m lucky, but there are obstacles.
There are times though, when I recognize and learn something new about the coolness of some of what I’m missing in the world of sound. I’ll put in hearing aids, and while they don’t allow me to catch everything, I can hear frogs, some birds, water dripping in the sink… and I realize how cool some of the sounds are that the hearing world takes for granted. I got home with my new hearing aids and sat by the sink, listening to water drip into the stainless steel sink <drip> <drip> <drip>. And it’s funny, but those sounds I cannot hear normally take on a 3-dimensional quality and can be visualized as such.
I’m saying all this not to whine or bitch. I’m saying it because it makes the real point of this post (coming right up) take on a much higher level of appreciation for those who could use it – several orders of magnitude for some.
At the UofM (Michigan) there is a contest, Feel the Music where students are being asked to come up with a way for the deaf to experience music, on-the-go, in an unobtrusive fashion. Normally, you experience music if you are deaf – by turning it way way up. I hear stuff best below 1KHz, so a good bass beat is great even if I don’t have to turn it up to 11. (The Matrix is good for that).
I wish Professor Zurbuchen and the students a huge success. They are doing a good thing here. A thing that is good to hear.
Update: Here is a link that Prof. Zurbuchen sent me if you want to learn more about the contest.
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For being patient, you deserve this.
Lemur King's Folly 
Early in his career wth the Air Force my Dad’s hearing was damaged while observing wind-tunnel tests without ear protecton. As the years went on his he gradually lost a lot of his hearing, aided by his frequent use of noisy wood working power tools with no ear protection no doubt.
Now he does a lot of the things you describe – he concentrates hard on the person speaking and misses side stuff all the time. He often mis-hears things and asks for clarification. I have to confess, that I had found this to be rather annoying.
A big part of the problem was that for many years he really covered up for how bad his hearing had actually gotten and it often appeared that he just wasn’t paying attention. He gets engrossed in things anyway, so it just seemed he was tuning people out more and more frequently. It wasn’t until fairly recently that I came to realize how much he depends on lip reading and whatnot.
It was only in the last couple of years that Mom was finally able to convince him that he needed hearing aides. He got fitted for some through the VA eventually but he hated using them. I’m not sure exactly what bugged him the most about them but he quickly stopped using them entirely. A couple months ago he visited another hearing specialist who runs local advertisments on Rush’s radio show and got a new set through him. He likes those a LOT better and wears them more often. And like you he marveled at the new sounds he heard. And yet, he still mostly doesn’t wear them. He likes his quieter world, but at least he isn’t trapped there anymore.
Thanks for laying all that out, Enas. I enjoy hearing (pun not intended) other’s experiences.
I think I can shed some light on why he might not like like hearing aids – or at least my best guesses.
One is that they have not been comfortable – historically. Now, I was actually allergic to the ear mold material and they itched like mad. I hated them.
Wind would blow over the pickup mike and you could not hear a thing – or – your eardrum would be blasted out with the volume.
A busy room would overwhelm you.
Feedback whine. Awful painful feedback whine.
Now though, they are air-breathing, lightweight, no feedback, voice-selective, loud noise discrimination and very very tunable.
But after so long of a silent world, hearing mostly low-frequency sound, the world is awfully tinny and so most folks are either whole-hog into the new aids or they use them as-needed.
My neice was born mostly deaf. It was a huge struggle for her. She did however teach me how to swear in sign language. Now that was cool.
I don’t know if other deaf folks do it but her symbol for “cool” was the ‘k” sign. That became our family’s lingo also. We’d flash each other the “k.”
Don’t know either, Allen. I do know that it is not uncommon to make unique signs between two people or groups of folks – hard for me to say about general usage. I can ask my friend/co-worker here. Perhaps “K” being short for “OK”?
He taught me sign for (ahem) intercourse (not the word I asked him) and then he was trying to make me laugh and showed me the one for gays. I sprayed tea all over my desk.
Was your niece able to speak well? It is very very hard. I shall refer to my friend as “Designer Dude”. Designer Dude does very well but I know it has taken a huge amount of effort on his part. How old is she? It has gotten easier than it used to be for deaf folks. Designer Dude is in his late 30’s and it was indeed hard back when he was going through the tough period.
No, her speech is not very good, but we all adjusted. She’s 26 and doing quite well now. She lives in Alaska.
If I get one more e-mail from her on the Greatness of Sarah! I think I’m going to lose it.
Hahahahahahaha!
I think I’d like the kid. Glad she’s doing well. It is so very easy, given the right (bad) circumstances to get battered silly and bitter as hell. It takes good support from family, friends, and teachers – and a really good deaf advocate/group who has a solid grasp on the pitfalls.
Regarding “advocates,” you might not want to read this classic rant.
The way I explain it is to say that I am basically hearing in a foreign language. Know how when you’re first studying a foreign language, you’re not fluent yet, and you listen to the tapes and hear something like “Vee kohmin veer eem Howpt-bann-hofe,” and you have to think, “Ok, ‘vee’ is ‘wie,’ means ‘how’; ‘kohmin’ is ‘kommen,’ the verb ‘to come,'” etc.? (Wie kommen wir im Hauptbahnhof = how do we get to the main train station) You have to translate word by word. Similarly, I have to translate each auditory input as I receive it, because I am not fluent in sound.
If that makes sense.
also, cute puppy *wants to pet and play with her*
Howdy do Mrs. Peel!
I’m a little slow on the uptake here. Are you (1) someone with english as a second language, (2) deaf, (3) describing what the hearing impaired goes through in trying to decipher spoken speech when it sounds like a big messy jumble of muted sound? Or is there an option (4) that makes much more sense than all of my guesses and I *really* look like an idiot?Based on your post, German is not your first language… beyond that, my deductive reasoning powers are tapped out. It’s after 11pm. 🙂
I just saw the link in your comment, and will now go read it, and this will all make some sense. Whew.
***profanity alert (not aimed at you, Mrs Peel!)***
Ok, Mrs. Peel, that was a great rant. I’d put that at a 9.3 (I’m a very strict rater) 🙂
Advocates in the sense I mean it is not an interpreter or captioning. I mean the relay service that allows a deaf person to communicate over the phone with someone who is not equipped with phone-text systems. An example would be my detailer (deaf) trying to reach me when I was on travel – he had no way of getting the information except through the relay service. That isn’t an attitude thing, that’s just a fact of life. Likewise, getting results from a doctor or talking to the heating service from work is just not possible for some.
The other sense of advocate that I meant it was a lady who was there solely to help if there was a communication error that wasn’t getting resolved. As it turned out, my detailer is very good at lipreading and did very well in the interview. The problem was that after interviewing for four years he did have an interpreter along because he wanted to make sure that the communication issue was covered – one seeks to use whatever tools are at hand rather than give up. He is very quick minded and extremely capable, so in retrospect, his experience of four years leads me to several possible conclusions – (1) interviewing for the wrong jobs, (2) communication error, or (3) people were not willing to hire deaf people. One or more, is my guess. He did what it took to get the job and he’s done fantastically well. Never give up.
I agree with you on limiting your children – it is unconscionable.
Now, regarding all that and how it relates to my post? My intent was really to point out to people some of the issues faced and from that illustrate how cool the contest was. Point of fact, there IS a chasm between the two “worlds” but that is not a reason to withdraw from it.
I referred to Sound and Fury because it is so controversial. Personally I’d have given the kid a cochlear implant w/o even thinking about it and “don’t get in my way”. It was awesome to see his eyes light up when he heard for the first time. And yes, to choose a spouse in order to ensure that you have deaf children? That’s fucking sick.
Fact: Life is harder. And it is harder still for quadriplegics. That doesn’t mean that just because others have it harder that you can’t speak of it.
I don’t put people into space, I build instruments for space out around, say Mercury, for example – among other things. I did all the hard work in spite of hearing loss and no one gave me special favors. But that doesn’t mean I won’t give people insight into why they shouldn’t just assume that “the deaf guy” is a fucking idiot.
Simply, I’m a fervent supporter of the deaf in the sense that I insist that they be given a chance just like anyone else to be successful at something and to lead a life that isn’t dependent (in the submissive sense) on anybody. I do NOT support rolling over and whimpering or running away.
Very good blog.
I lost my hearing at the age of 16. at age 60 rec’d a cochlear implant.Geez what noisy world.
Almost got a divorce because my wife has a screechy voice,so I quit using the implant.