Anyone who has watched movies, and that surely is almost all of us, know that when certain scenes come up there is always very dramatic music in the background. One of the strange things about me being deaf for more than 25 years now it that my brain just doesn’t remember what music sounds like. Even though I don’t remember the sounds the fact that it was dramatic music still remains. When the soldiers landed on Normandy the dramatic music boomed. Whenever there was a seemingly life changing event on the silver screen there was always dramatic music in the background.
It’s funny how life just doesn’t align with movies. One of the most dramatic times in my life was when I went deaf. There was just no music playing for that event. As a matter of fact the only sounds I heard with the ringing from my still present tinnitus. When family members have died no dramatic music. But I do remember some pretty good organ music on my wedding day. Let’s face it life in the movies is just not the same as life in general. We just don’t have music to emphasize to us that a dramatic moment has occurred in our lives.
But one thing I have learned in my old age is that life is what happens when you are planning for something else. I am a planner; that is just my nature. So, I spend quite a bit if time planning our annual vacations and such. But I have come to realize that I plan for maybe 10% of my life while letting the other 90% sort of just happen. We have to realize that life happens to us 24/7 and not just those time we dream about or plan for. Spending time on the toilet everyday is not something we dream about but it is just as much a part of life as any other event. Don’t disregard the simple things in life, they, whether we like it our not, are where we spend the majority of our time.
I want to close this post with a quote from a great theologian and author C.S. Lewis from the 20th century:
“The future is something which everyone reaches at the rate of 60 minutes an hour, whatever he does, whoever he is.
Source: DO NOT OPEN « creativetidalwave.
Working in a deaf school for many years I learned the value of incidental learning. So many students lacked a lot of common knowledge often taken for granted. We are constantly learning from events and situations that are going on around us though we are often not aware or participating in them directly. Being deaf cuts one-off from a more experiences than most are aware. They are often clueless of what is happening around them because they are not alert to turn to observe due to a lack of being able to hear to know something is happening.
I don’t often talk about what it means to be deaf in a hearing world these days but the words by one of my blog buddies got my attention. I readily admit that there have been several times in my life that I just didn’t “get it”. As stated above being deaf cuts one off from more experiences than I like to admit. When I often sit silently as my friends converse about one thing or another my mind leads me in a different direction than what is actually occurring around me.
I have had some questions and some search engine links to my blog about a “late deafened culture” so I want to talk a little about that here. As I mentioned on other posts I have been deaf for the last twenty-five years or so. Anyone who went deaf after acquiring the ability to speak is considered late deafened so I am obviously one. We make up about 1.5% of the current population in the U.S.
The other deaf group is the pre-lingually deaf. They typically have been deaf since birth or at a very early stage. They make up about 0.5% of the current total population. Many in that situation are part of the Deaf culture (with a capital “D”). They associate primarily with other deaf and maintain that their deafness is not a negative in their lives but a positive. Many come to celebrate their deafness and consider restoring hearing, via cochlear implants, in children as child abuse.
Those of us who are late-deafened usually maintain their identity in the hearing world. We, for the most part do not identify our deafness as a beneficial part of our lives but instead treat it as getting in the way of our day-to-day living. Many, like myself, seldom come across someone else who is deaf in our daily encounters. For all of the above reasons we do not have, per se, a culture that is unique to us. We are more likely to identify with the culture of our heritage (Italian, Irish, etc) than that associated with our handicap.
One of the facts about late-deafness is that the majority of us are senior citizens. That is many, but not me personally, go deaf due to aging. Therefore for many of us the loss of the ability to hear is a devastating occurrence. It often leads to very severe isolation for those seniors. Some could be helped to varying degrees by hearing aids and other tools but refuse to acknowledge that they need any. Being a senior with the corresponding loss of many of our working world relationships is hard enough without having to cope with no longer being able to hear.
So, to answer the initial query there is really nothing called a late-deafened culture but maybe there should be? There are support groups around to help the late-deafened. One of those is called ALDA (Association of Late Deafened Adults). I was a member of this organization for some time but it is really more of a social club than an advocates group. The NAD (National Association for the Deaf) does advocate for both pre-lingual and late-deafened but, in my opinion they are much more slanted toward the former rather than the latter.
Source: The Body Odd – Cracking the code: Why yuor barin can raed tihs.
For emaxlpe, it deson’t mttaer in waht oredr the ltteers in a wrod aepapr, the olny iprmoatnt tihng is taht the frist and lsat ltteer are in the rghit pcale. The rset can be a toatl mses and you can sitll raed it wouthit pobelrm.
It is funny how we can read this above sort of thing. It is even funnier how I can read my own handwriting a day or more after I have written it.
We use context to pre-activate the areas of our brains that correspond to what we expect next, she explained. For example, brain scans reveal that if we hear a sound that leads us to strongly suspect another sound is on the way, the brain acts as if we’re already hearing the second sound. Similarly, if we see a certain collection of letters or words, our brains jump to conclusions about what comes next. “We use context to help us perceive,” Kutas said.
I am deaf and I often times have to rely on what people commonly call “lip reading” to try to figure out what is going on. In the context of this post I want to tell you a little about this topic and how it relates to the source article. First of all the more accurate term is “speechreading” as it is more than just watching lips. It is watching body language, expressions, and most importantly context. Many words appear the same when trying to speechread. One group of words that appear the same on the lips are “buy”, “my”, “pie” or letters b m and p. So, when I see the lips purse for a b, m, or p I have no idea which is being spoken without trying to put the word in context. With these types of problems in mind a deaf person trying to figure out what is being said is simply a guessing game. For even the most fluent speechreaders, I am certainly not one of them, only about one-third of the words are gleaned by actually seeing them on the lips. The rest have to be guessed by taking the context of what the topic is.
Context is everything in speechreading and being able to read the gibberish at the start of this post is the same thing. When words are taken out of context speechreading becomes almost impossible for anyone. I have no problems speechreading someone who asks me how I am or if I like a particular thing in front of me. But when they come to me asking about how IBM did in yesterday’s stock market I very likely will give them a glazed look.
I am a wordsmith. I struggle to find just the right way to say something in all of my posts. So, having to fill in a 66% gap in a discussion comes difficult to me. The other thing about speechreading is that it is a very tiring thing. It takes total concentration and then some to accomplish it even at a rudimentary level. After a few minutes of filling in the gaps I just get too tired to do it anymore, at least with any degree of success.
I am tired just thinking about all this stuff so I will stop here…
Continuing on with tools that help me and other deaf people coupe in the hearing world this post will cover closed captioning. When I went deaf in 1988 there only about 10% of the television coverage was closed captioned. That meant that I was pretty shut out of TV. And even for that 10% I had to order an external closed captioning unit for my TV as the hardware was not standard at that time. The captioning unit costs almost as much as the TV and due to some technical matters the degree of accuracy of the captioning varied widely. Some of it was just not readable!
But maybe I am getting ahead of myself here as some of you might not even know what closed captioning is. Closed captioning is where all of the sounds and words on a TV program are spelled out in text somewhere on the screen. Many hearing people use it today so that they can turn off the sound and still watch TV. Of course this is usually so that their hubby can get to sleep without the noise.
Fortunately as the years went on captioning became more and more available. The main reason for that was the Americans with Disabilities Act signed in congress in 1990. It mandated that by 1994 all television would include a captioning chip (about a $5 cost whereas I paid over $200 for the external box). It also gave requirements as to what was captioned and how long it would take before all TV was captioned. I am a somewhat realist and realize that without this law TV would have probably been inaccessible to the 10 million or so of us that depend on captioning as it is today. Private businesses just don’t deem that number of people worth doing much extra for.
Fast forward to today and just about all programs are now captioned and of course all TVs made since 1994 have the ability to pick up that signal. But the quality of captioning on some of the networks is somewhat substandard. One of those cable/satellite channels has been the Hallmark channel. When they started up they waited until the last possible minute to legally bring up captions and it seems that they tend go to the vendor of lowest cost to get their original content captioned. I had always had a respect for the company but due to this experience I learned that they are pretty much the same as everyone else when it comes to profit verses service performance.
Anyway, thanks to the ADA act I can pretty much watch TV the same as everyone else. The only challenge I seem to have in the area is when we travel and come across hotels that have not replaced their TV inventory in the last sixteen years. But that is another story
And yet another story is with the increase use of video on the internet I am again beginning to feel left out as almost none of the videos are currently captioned. I guess I will have to wait for congress to regulate internet videos for that to happen. But of course with the extreme partisan gridlock that has taken those folks over it might be years before they can agree to act on this matter or anything else!
And the journey goes on….
I think of my deafness as an affliction that I must daily try to overcome in order to go about my business in the hearing world. That is not the case with some, perhaps most, who are born deaf. They claim they celebrate their deafness to the degree that they deem giving any child who is deaf a cochlear implant is child abuse! A cochlear implant is a device that is surgically inserted into a deaf person’s hearing system to allow many of them to hear.
The deaf who strongly identify with their deafness are know as the Deaf Culture with a capital “D”. As I said above they celebrate the deafness and do not wish to join the hearing world. In large population areas they, like many minorities, tend to associated primarily with others like themselves. Where possible they shop at deaf retailers, get their haircut from deaf barbers, etc. There are some who are late deafened who choose to join the Deaf culture but they are by far the minority of that culture. In fact many who are born deaf hold an animosity towards those of us who went deaf after being fully associated with the hearing world. One of the reasons for this is that we use English Sign Language instead of ASL. They say we are polluting their language by putting it in an English word order. Don’t get me wrong; those who have an animosity toward other deaf people are an extreme minority of the population much like the 9/11 terrorists are an extreme minority of the Muslim population. (I am definitely not saying the Deaf culture folks are terrorist so please don’t go there.)
In my experiences many in the Deaf Culture crowd see their population constantly dwindling each and every year due to cochlear implants and other medical advances. They seem to see the writing on the wall that soon, probably within a couple more generations, they will be a much smaller group than they are today. This greatly threatens their way of life. In that regard I can understand their feelings and have a degree of compassion for them. But life must go on and in the hearing world.
And the journey goes on….
I know that I am not the only person in the U.S. who is deaf. In reality there are more than three million of us around. About two million of those are like me who went deaf as an adult. That means for Indiana where I live there are about forty thousand of us around. But since I am not active in any deaf clubs or organizations I seldom come across another deaf person in my daily life. When I do I am most often too surprised to try to effectively communicate with them. So, to me being deaf almost means being alone in the world. I am constantly around only hearing people.
When I first realized that deafness was the reality for me I indeed felt alone in the world. My ear doctor of several years basically told me that there was nothing else he could do to save my hearing so “please go away”. He did not offer any referrals to groups or such that could help me cope. I got the idea that he thought of me as one of his failures and he wanted me out of this sight as quickly as possible. As I later learned from other late deafened adults this was not an unusual scenario with a ENT doctor.
Up until that time I did not have any friends, family, or acquaintances who were hearing impaired. So, I like most other hearing people didn’t realize that those who were deaf in later life were just like everyone else except they couldn’t hear. I had read stories about how deafness caused severe depression in some; even to the point of thinking of suicide! I very much dreaded the day that I would lose the last bit of hearing. I felt very much alone in the world. The only support I seemed to have was from my dear wife and, of course, she knew no more than I did about what I was going to face.
Here it is 22 years later and I did survive those years and everything turned out fine. At least for the most part. I did go through some periods of depression but managed to cope with them. I found support groups in the early years although I have not made contact with many of them for more than a decade. Yvonne and I learned signed English sign language. Over the years I have accumulated all the various technologies that help me cope. Do I sometimes still feel alone in the world. You betcha. I often say that I feel the loneliest when I am in a room full of people. More on those things in later posts.
And the journey continues….
When I went deaf in 1988 there was no way for me to communicate with my wife or others once I left the house. Even at home calling others was almost impossible. I had a device called a TTY but the person I called also had to have one to communicate with me. They cost about $500 and could only be used with deaf people so they were far and few between. I could use a thing called the Deaf Relay service. How that worked was that I would call a special operator with my TTY and they would call the person I wanted to talk with. The operator would then listen to the other person and type for me on my TTY. The inconvenience of doing this and having another person listening in on the conversation made this method of calling pretty much a rare thing. Since my wife is hearing I usually depended on her to make all my calls. But that did not solve the being away from home and communicating with her.
It would take about twenty years before I could call my wife. I had to wait until text messaging on cell phones was finally developed before that happened. Now with my cell phone set on vibrate mode I frequently get messages from my wife and others while on the road (but I don’t actually text on the road. I pull over to do that.
Text messaging and close captions have indeed made my deafness more tolerable. More on close captioning next time.
The picture here has nothing to do with the post. It is of a college room mate I had for one semester in the 1960′s. His name was Knute and he came over from Norway via a freighter to go to the engineering school at Purdue. Knute learned enough English that he was somewhat able to communicate but with broken English. Of course he taught me how to say a bunch of dirty words in Norwegian and I taught him the equivalent in English . I think he went back to Norway after he graduated ? Like so many other “lost” friends I wander how he is doing now.
And the journey goes on…
I am doing something here that I have not done on any of the other blogs I have created. I am going to come up front with the fact that I am deaf. Being deaf is a major part of my daily experiences but it is not who I am. It is just one of those obstacles that sometimes get in the way of having the full life experiences I desire. I have many stories to relay to you about being deaf but they will wait for a later posts. There is also a lot of very different statistics about the deaf but that will wait too.
I will spend some time here on personal history with being deaf and a little about others who are deaf. I became deaf in 1988 at the age of forty two. The reason for my deafness was a congenital disease but I haven’t found anyone in my recent (four generations) history who were deaf? My loss of hearing started in college in the mid 60′s and progressed to complete deafness in 1988. A cochlear implant is not possible for me.
There are about 500,000 people in the U.S. who are completely deaf as I am. But there are also about 2,000,000 others who are said to be deaf but manage to retain a small level of hearing and therefore are able to more easily cope in the hearing world. I can attest that, at least for me, being able to hear even just a little bit was enormously different than losing all hearing. There are two basic categories of deaf people. About 80% of deaf people are like I am, they went deaf after acquiring the ability to speak; they are called late-deafened. To us English is our native language. Most of us are pretty much islands in a hearing population. That is we don’t associate on a day-to-day basis with other deaf people but continue to live in the hearing world.
Twenty percent of the deaf population (100,000) were born deaf or went deaf before acquiring the ability to speak. This group is called pre-lingually deaf. Many in this group became deaf due to medical reasons: some because of illnesses and others due to having spent too much time in oxygen tents as babies. With the recent recognition and control of deaf causing illness and the increase in cochlear implants this group is shrinking rather dramatically in recent decades.
Many, but not all, of the pre-lingually deaf seek out and associated as much as possible with others like them. They form what is known as the Deaf Culture (with a capital D). They are proud of their deafness and even celebrate it as part of their culture.They use a form of sign language called ASL with is really a separate language from English in that it is more conceptually based than written or spoken English. To them ASL is the primary language and English is secondary.
Only about half of those who are late-deafened learn any form of sign language. The majority of those who do learn to sign use what is called Signed-English. Signed English uses many signs from ASL but they put them in an English word order. I am in this group. My wife knows how to sign but very few of my friends or associates ever take the serious amount of time to learn to do this. For that reason I constantly carry around pencil and paper.
That is enough for now. In the future I will relay some of the many stories about struggling in the hearing world both in my personal and corporate life. As I said at the beginning, I am deaf but that is not who I am. Unlike some in the pre-lingual group I don’t celebrate my deafness but instead I accept it as a hurdle to be overcome almost every day of my life.
And the journey goes on…..