Understanding Late Deafened (An Excerpt)

RonJaxon

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Hi everyone.

First of all let me explain what this is all about. Some friends commented that I should write about my experiences. I grew up hearing, became deaf between 15-20 years ago (Hearing dropped to deafness gradually during that time). I'm now in the process of getting a CI. So my life as far as my hearing has been a bit of a roller coaster.

One thing I decided to write about is what it's like to be "Late Deafened". I obviously can't write about being born deaf because I wasn't. But I of course know what it's like to become deaf in my late teens and live with my deafness for almost 20 years.

So right now I'm just sitting down and typing out what ever thoughts come to mind. No real structure yet. Just getting it all out of my head and into text. Then later I'll go through it and break it down into a more structured and fixed grammar essay.

So I thought I'd share what I've written so far with you all. I'd love to know what you think and if you have any part you agree or disagree with. I can't speak for everyone but this is just my own thoughts and experiences. I'd also love to know what you have to say on the subject.

So here's an excerpt on what I've written so far.

Understanding the Late Deafened
My Ron Jaxon

What's the difference between “Deaf” and “Late Deafened”?

There is a huge difference between someone who was born deaf and has never heard sound in their life and a person who could once hear and becomes deaf later in life. I myself lost my hearing gradually in my late teens. During a 5 year span my hearing decreased from being able to have conversations on the phone to not being able to hear anything even with hearing aids. So this has given me a pretty good perspective of what it's like to live in both the silent world and the world of sound.

I cannot speak to much about what it's like to be born deaf but with me being deaf for about 20 years now I can pretty much assume the differences we face. A person who was born deaf has never heard anything. They have no idea what the wind, birds, music and speech sounds like. They've never had a conversation that flows at the rhythm that oral communication has which often contains people talking over each other. So they basically don't fully know what they are missing because they've never experienced sounds.

People who are late deafened on the other hand know what they are missing. They've had “Normal” flowing conversations. They've heard music and the singing of birds. They've been able to just pick up the phone and order a pizza or call a friend. They know a crowded room is likely louder then a room with only a few people. This knowledge of “Knowing what we are missing” puts us who are late deafened in an entire different situation form those who where born deaf and also from those who can hear.

Another term many use for people who are late deafened is to be “Between worlds”. In a way we are stuck on the outside of any culture. Many late deafened become associate with many people in the “Deaf Culture” but because they didn't grow up in that culture we're still viewed as basically outside of that culture. Maybe a friend but not a member is a good way to put it. Then of course the “Hearing culture” view us as “Handicapped” or “Disabled”. So as you can see being late deafened presents some unique challenges. Along with these challenges comes a lot of emotions.

Another issue with being late deaf is the fact that when we are adults it becomes harder to learn a second language. Test have shown that adolescent children can pick up a second language much easier and faster then most adults because of stages in brain development. In an attempt to avoid all the technical explanation our adult brains are basically already wired in our ways and means. Those pathways have already been mapped and it's harder to puzzle a new language in there. For this reason many late deaf know some sign language but usually aren't' fluent. It's mainly just used as a back up with all else fails. If we can't get what's being said t use someone finger spelling a couple of key words is a big help.

So what I'm about to say below is intended to help those who have someone in their life who is late deafened to not only make communication easier but to also understand what it's like in the silent world they live in. A world that has been partially blocked from them. A world where one of the senses they once has is no longer available to them.

Communication with the Late Deafened

Do you ever get frustrated with them when they look away while you are talking to them?
Do you think they ignore you at times when you're speaking to them?
Do they ever seem to just shut themselves out of a conversation?
Do they ever seem to be more comfortable on their own rather then joining a group?
Do you ever think they really heard you but act like they didn't because a few seconds later they gave a correct response before you where even able to repeat yourself?

Above are just a few of the things you might observe about someone who is late deafened. I'm not suggesting that all late deafened d these things but they are very common. As a late deafened person myself I know that many of those things above are things I've done and I notice the people in my life usually don't understand the reason behind them.

It would seem that the hardest part for someone who is late deafened would be their ability to communicate with the world around them. While I agree that it is the root of many of the issues but the inability to hear speech alone is not the biggest obstacle. I hope this will become clear in a few moments but for now let's look at what its' like for a late deafened to communicate.

First of all most late deafened are not fluent in sign language. Even if they took the classes and became fluent chances are most of the people in their life's aren't fluent in sign language. So it still wouldn't be all that useful to them. Having said that if you are close to someone who is late deafened I strongly encourage you to at least learn how to finger spell the alphabet. I can't stress how just these 26 hand shapes will make communication so much easier. If for example you ask them, “I'm going to the store. Do you need anything”? If the late deafened person cannot pick this up then just finger spelling a key word or two will usually be all that's needed for them to piece together what you are saying. In this case just spelling the word “Store” would likely be enough to at least give them the topic of discussion.

Lip Reading
First of all this term is very deceptive. When you speak to a deaf person it's not only your lips that they are observing to understand what you are saying. In fact the lips are actually not the location we generally look at when you are speaking to us. What we are mainly concentrating on is your entire upper body. Our eye are usually pointing at the center of your face (Around the nose) but we are taking everything we see into our observation. This includes facial expressions, bod language, hand and arm movement and all other ways we communicate visually. Even hearing people communicate more on a visual level then an audio level. The old saying “What you say isn't as important as how you say it” is a very true statement.

I've made many attempts to describe what its' like to communicate with people without being able to hear them. The best way I've been able to describe it is to use a metaphor that people can relate to. A good example is the TV game show Wheel of fortune. The first thing you get is the main topic (Place, person, thing, etc...). Then when the letters are turned over on the big board you are getting bits and pieces of the word or statement. The more letters you that are revealed to you the easier it becomes to mentally fill in the blanks and understand the entire word or statement.

This is a lot like how it is for us who have to communicate with the absence of sound. We only pick up bits and pieces and we have to constantly fill in the blanks. Could you imagine every conversation you have being a puzzle like this? How long could you play this game before you started to get tired of it and get headaches from the constant concentration and search for pieces that are missing from the puzzle?

Let's look at a situation and see if you can imagine what this would be like if it happened to you and you where deaf.

You are awaken by a friend, family member of spouse. The room is fairly dark so when they start talking to you to tell you why they had to wake up. You tell them that you need more light. So they flip on the lights and start talking again. Your eye have not adjusted to the light yet so you have to look away or blink your eyes for a moment. They act a little frustrated because you're not looking at them. When you finally look at them they start to talk and you have no idea what the topic is they are talking about so you're instantly lost again. Maybe you picked up something like.

“____ _____ _____ ____ car ______ ____ ____ ___ ____ work.”


You're mind will start to look for the parts you are missing in this statement. When you think your eyes automatically look in different directions (Everyone does this when they are concentrating on thoughts). So while you are trying to fill in the blanks of what little you could pick up from what you saw them saying, they notice you aren't looking at them again and get even more frustrated with you. Meanwhile you're also getting frustrated because you can't yet figure out what the missing words are to their statement. So you repeat what little you did get in hopes that they will confirm if you got at least that part right.

“Car Work?”


But instead of confirming if you're right or wrong they just assume that means you understand and move on to their next statement.

“___ ___ ____ meeting _____ ____ clock.”

Now you're got two statements to puzzle out.

“Car Work” “Meeting clock”

You're still not sure if you got the first statement right and you only got part of the second one too. So you're concentrating even more to try to find clues from what you've gathered from both statements in hopes that it'll all click together. So of course you look away again as you puzzle this out.

Can you see how much frustration and concentration this takes? I hope this helps to understand why we might have to take a break every now and then.

What are the chances that you'd come to the conclusion that they where say:

“You need to move the car so I can go to work. I have a meeting at 8:00”.

Now let's look at some ways this conversation could have been much easier for both parties.

First of all understanding that their ability to understand what you say is all in their ability to see you. So if they just woke up you're going to have to wait for their mind to wake up as well. If a dark room suddenly becomes light you should understand how that's going to impair their ability to observe your speech. In this example the person who is waking the deaf person up is in a hurry so the best solution probably be to just right it down before waking them and let them read it as soon as they are awake enough to. This will take the “Puzzle” out of the situation and they can just read what you need to say.

But let's assume they are awake and adjusted to the light.

They pick up that you said:
“____ _____ _____ ____ car ______ ____ ____ ___ ____ work.”

After they puzzle for a moment and repeat what they did hear and it's said as a question. This is very important to understand. Repeating what you said back as a question does not mean they are sure they heard you right. The “question” means they are asking for conformation that they at least got those words right. So they say:

“Car Work”?

The best way to move on from here is to confirm that they are right or wrong. So you could say:

“Yea. Move YOUR car”.

Emphasize the “Your” visually. Perhaps you point on them. If you do not confirm or deny their question they'll get even more confused. So the “Yea” is very important here. It means they got part of it right and don't have to worry about that anymore. So “move your car” tells them even more. It tells them that you are speaking of his/her car. This likely will tell them more then you've already said because they now know what it's about. It's about their car and they'll probably only be able to think of a couple of things that the statement can be about (Maybe they need your car, move your car, etc..).

So they might say?

“Move my car”?

This is another quest for confirmation. So you could say:

“Yes, I need to go to work for a meeting”

The “Yes” is the important word here again. It confirms what they think they understand.

The above may seem more frustrating then the original situation when you read all my explanations but it really isn't. All it takes is understanding of their situation. Without the explanation the conversation would be like this:

A- “You need to move the car so I can go to work.”

B- “Car work?”

A- “Yea. Move your car.”

B- “Move my car?”

A- “Yes, I have to go to work”.

So it's not as frustrating is it may seem. It will require some understanding and patience on your part. But keep in mind this is not a condition the deaf person has any control over. They have to deal with this every single day in every single conversation they are in. So if you have a person in your life that is deaf then learning how to ease communication will make life a little easier for the both of you.

This wheel of fortune metaphor also explains why at times it might seem like they heard what you said but act like they didn't. Let's use the same example to explain what I mean.

They heard you say:
“____ _____ _____ ____ car ______ ____ ____ ___ ____ work.”

So they say:
“What was that?”

Before you can repeat they say:

“Oh you gotta go to work. Ok. I'll move the car.”

What just happened is before you where able to repeat what you said they where able to piece the puzzle together and figured out what you said. It just took them a moment to work it out.


Why does he/she go off by themselves sometimes?

If you have someone in your life who is deaf you might notice that sometimes when there is a group of people chatting together. The deaf person might leave the group and/or find something else to do rather then join the group. This is a pretty common thing for a deaf person to do in this kind of situation but the reason for this isn't what most people might think. Especially for someone who is late deafened for some of the reasons we've already discussed.

For one thing a late deafened person likely could at one time participate in a conversation with multiple people. So they understand that a social gathering has a sort of flow to it. But the deaf person cannot usually keep up with it. It doesn't matter if the people in the group are willing to pause every now and then to fill the deaf person in on what's being said. That's not what's really bothering the deaf person in this kind of situation. What's usually foremost on their mind is that they can tell that they are the cause of that pause. One way of putting it is we start to feel like we're a burden to the social moment rather then a part of it. We truly appreciate it when the people are willing to fill us in from time to time but that's really not enough. We understand this and if we care about the people in this group we don't want to be a burden on their good time.

There are only two real solutions to this situation. One is if the deaf person could have someone interpret for them during the entire social gathering. This is usually not possible for us late deafened because as I mention before most of us aren't fluent in sign language and usually don't have many people in our lives that are either. So this usually isn't an option.

So we often go off and find something else to occupy our time. If you see us do this don't feel any pity for us. Don't think we're leaving to be rude. We're often use to doing things on our own anyway. The constant “puzzle solving” that is part of our every day life's can be pretty frustrating. So a break from that is sometimes not only welcome but often necessary.
Let me share an example from my personal life. A group of friends came over one night and sat around playing games at a table. We pulled out some board games and played a little poker. During the game playing at the table I was enjoying the games. There was of course some casual conversations going on but the main focus was on the games we where playing. All I needed to be interpreted or repeated to me where little comments and jokes every now and then.

After we where done playing games the group just sat at the table and talked for a couple of hours. After about the first 20 minutes of this I started to feel less and less a part of the conversations and more of a burden. Every time I asked for someone to interpret something to me I noticed that subject would pretty much end and they'd find something else to talk about. I'm sure you can imagine that it's very easy to loose interest in a conversation with a group of people when you're only getting a few words here and there. I tried hard to keep up and they where more then willing to fill in as much as they could. But I still knew that I was the end of each conversation. My eyes started to get tired of constantly trying to read each person who's speaking. I headache was surely on the way from the constant concentration and head turning.

So, rather then staying and spoiling their time or making my eyes and head work more on a lost cause. I thought about other things I needed to do or enjoyed doing. I had a book I was reading and remembered I'd like to see what happens next. So I just sat over on the couch and started reading. I wasn't upset. I wasn't annoyed by them and I wasn't leaving them to be rude or complain. I simply found something I enjoy doing while they do what they're enjoying. So everyone, including me, should be happy.


So if you have a late deafened person in your life and you notice them do this from time to time. Try to understand why they do it. Don't feel that they are unhappy in any way. Just let them ease the tension that is constant with communication. You'll find that after a while they'll come back for an update on what's going on.

TO BE CONTINUES..

Thanks for listening.

Ron Jaxon
 
They heard you say:
“____ _____ _____ ____ car ______ ____ ____ ___ ____ work.”

So they say:
“What was that?”

Before you can repeat they say:

“Oh you gotta go to work. Ok. I'll move the car.”

What just happened is before you where able to repeat what you said they where able to piece the puzzle together and figured out what you said. It just took them a moment to work it out.

This happens to me a lot. I'm going to show this to my wife so she understands it's taking me a second to piece it out and that I'm not selectively hearing what she says.

I agree that even just having the finger spelled alphabet for content words makes a huge difference.

A- “You need to move the car so I can go to work.”

B- “Car work?”

A- “Yea. Move your car.”

B- “Move my car?”

A- “Yes, I have to go to work”.

I never even thought of the technique you gave about conversing with a deaf/hoh person. I am going to show that technique to my family and friends too because it will make it a lot easier on me if they give me a confirmation or correction of if I heard something right.

Thanks for sharing. :)
 
Thanks for this. You've given me an insight of what it's like to be late-deafened! I have no knowledge of being late deafened since my HL was detected and diagnosed at 9 months of age!
 
Ron, that was awesome. Whatever happened to your captioning device?
 
Thanks guys. The fact that CJB said it was even a little helpfull will make it all worth my while.

Ron, that was awesome. Whatever happened to your captioning device?

I still want to work on that more but I have limited means. I still have it on my "Hope to work out" list. But right now I'm thinking a lot about getting my CI. Insurance finally authorized it. So just waiting for surgeon to schedule it. So a lot of projects got moved to the background right now. :)

Ron
 
Thanks! Ur post rings true...as I was late-deafened at 14....Look forward to more posts from you!
 
I just talked to a guy who edited some of my writing for my magic column (A magazine for magicians) about this project and he said he'd be glad to help with it. I'm hoping that this will be something I can offer (Free of course) to anyone who is late deafened or is close to someone who is. Most likely it'll be a PDF E-book. The finished work will be better structured and edited. What you read above if just my typing thoughts out as they come and I'll organize it later.

Like I said in my last post. If it helps just a couple of people then it'll be worth the effort.

I of course can only write based on my own experiences. So I'm asking any of you if you have anything to contribute please let me know. It doesn't have to be well written or anything. It can just be something that you've found helpful or explain some of your experiences and/or solutions to thing that we often experience. Anything that could be helpful for someone who is deaf or has someone close to them that is. Particularly those who are late deafened or profoundly HOH.

When it's done I'll post the completed work for you all to keep. Maybe if it's helpful for you you can print it out and give it to the people in your lives.

Ron
 
RonJaxon said:
So I'm asking any of you if you have anything to contribute please let me know.

This is the first thing that came to mind. Since I'm HOH I can hear speech in a quiet room. I know it helps a lot of Deaf/Hoh people to keep eye contact and face the person. However, even as a blind person, I find it helpful. The reason is because when they're speaking in the opposite direction, the sound of their voice travels away from them and bounces off walls making it even more unclear. When they speak directly to me, the sound of their voice reaches my ears first, making it easier for me to decipher.
 
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Thanks, Ronjaxson. I'm going to share it with my hubby. He's very supportive. I try to explain what I need so that he can be supportive.

I especially like how you describe the need to be alone for a while. I get exhausted after listening for a while. I also spend more time reading and on the computer instead of watching tv or listening to the radio.

It's frustrating that many people expect me to understand them because I'm only hard of hearing. People don't understand how hard it is to listen to speech, read lips and fill in the blanks. No wonder I get tired!

Best of luck on progress with the CI. Looking forward to reading how it goes.
 
It's frustrating that many people expect me to understand them because I'm only hard of hearing. People don't understand how hard it is to listen to speech, read lips and fill in the blanks. No wonder I get tired!

:gpost:

Exactly. For hearing people, listening is a passive thing. For Deaf/HOH, it's something you have to do actively and consciously. And because of that, it's draining.
 
good post. i am also late deafened. it is very tiring to sit and lip read all day because the world around me is hearing. somedays i just want to take my brain out and put it on a shelf to rest from lip reading all day. meetings and school is exhausting. hearing people have no idea. you did describe very well what lip reading is like. i tell people constantly i need to take a break by my self because of it. i tell them its like doing a puzzle everytime i have to talk to anyone and it never ends.
 
onset late deafness

hi Ron a very very big thank you for your understanding late deafness . i am moved to tears that some one has put into words just what i am going threw. I am hard of hearing (with 2 hearing aides) and find that people around me get frustrated because i dont catch what they say. I've done B.S.L stage 1 and find as you say no one to sign with. I am just about to get the family to read what you've wrote and hopefully realise what our world is like.please please keep at it give us who cant put into words a voice . bless you x katie
 
Welcome, Katie. I know what you're going through and how hard it is. Lots of us here. Glad that you're here! :wave:
 
Ron, would you mind greatly if I shared this post with the state assistance person? I really think that this wisdom could help LOTS of folks. I will wait to hear from you.
 
Ron, would you mind greatly if I shared this post with the state assistance person? I really think that this wisdom could help LOTS of folks. I will wait to hear from you.


Sure, you and any of you can use this in any way you'd like. I'm sorry it's not edited yet though. A lot of typos and grammar errors that need to be corrected. I'm also going to break it down into a better structure. But like I said feel free to use it anywhere you wish. I'm honored.

I'm kind of frustrated because I did some editing and added quite a bit to this. My plan is to get it all down then spend some time editing it. Then break it down into a better structure. The reason I'm frustrated is my computer crashed and is in the shop right now. I save my files on an external hard drive but I've got a couple of days work that I didn't save on my external drive. So if they have to reload windows on my computer to fix it I might have lost some of that work. Argh! :(

When I'm done I'm going to share it with a friend of mine who is also deaf. He's written a few books already on different aspects of deafness. Some are very interesting. For example one is about deaf during the holocaust, one on deaf folklore and even this one about deaf magicians (I happen to be in this book). I'm hope he'll have some advice on how to make this as good as it can be.

Ron Jaxon
 
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Thanks RonJaxon, I am late HoH as well, but at the slide going down at this point. I still can keep up with a one-on-one, but in groups, I know exactly how you feel about losing the conversation.. I know from other family members it is going to go down, but at what rate is unknown. This gives me a good glimpse of things to come and some of your methods I think will be great to share with friends and family now so I can prevent some of the frustration by presenting good behaviors.
 
Thanks Ron for a very good piece. I too am late-deafened. Hoh from birth to 43, then lost it all after that. Lipreading is not very easy or fun. I have a problem with people who have "muppet mouth" and there seems to be a bunch of them here in Florida. (too much sun?)
 
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