Re: Question about deafness

[Guest guest]

? Is there something I can

do to help Karina's awareness level? I always though the body made up for one sense being missing. Karina can hear some things like a piano sometimes with her ABI

but in our home she tends to not wear it. I am starting to refuse to communicate unless she wears it. With her ABI on she can read my lips fairly well without it

very little communication is understood and we both get frustrated.

I find this whole approach abusive. Is the ABI for YOUR benefit or for Karina'a? Think about it! The ABI gives the wearer LESS benefit than a cochlear implant and those are far, FAR from perfect. Let up on this girl or she is very likely to become extremely hostile toward you and blame YOU because she isn't "good enough" the way she is.

If you so damn worried about accurate and easy communication, why don't YOU present sign language as an option? I think you just want to do what is easiest for YOU, not necessarily what is best for Katrina.

The other senses don't get sharper when a person becomes deaf. I believe a deafened person learns to become more visual oriented but that doesn't mean the person's vision actually improved. Vibrations are going on constantly in our environment and they can confuse a person but I think this is the very least of YOUR problem.

Bette

[Guest guest]

!!!! Remember even if you can read lips it is not accurate. Certain things look very much the same.

Marnie

You are right, Marnie! The BEST lip readers (those who were born with the skill and were able to develop it are in a very small minority) get less than 20% of all words on the lips because the words either look like other words or they are invisible like the word "indian." There are so many guessing games involved when lipreading that I don't feel it is an accurate method of communication. It is more a "myth" that needs to be dispelled.

Bette

[Guest guest]

:

Can you lipread men who have hair on their lips?

Can you lipread people who do not face you directly?

Can you lipread children?

Can you lipread people who have accents?

Can you lipread people who have additional disabilites which make their llp movements distorted?

Can you lipread people when it is dusk?

Can you lipread people in a dark restaurant?

Can you lipread people in an ultra bright lites environment?

Can you lipread people when you are exhausted?

Can you lipread people when you are ill?

Can you lipread people when you are on narcotics?

Can you lipread people who are talking really fast?

Can you.....

I think you get my drift. We cannot control our enviornment for the majority of the day. We adapt to the conditions. Life would be passing me by if I depended on lipreading. I have too many other people attempt to lipread, think they got the jist of the message and then find out later it was totally off...sometimes with disastrous results.

I got the 20% figure from reseach. I also base my opinion on working with a WIDE variety of deaf, hard or hearing, deafened and deafblind people everyday.

If you can lipread well, you are one of the lucky ones.

Bette

[Guest guest]

HELLO KAREN,

PLEASE UNDERSTAND I USE CAPS BECAUSE OF MY VISION.

I FEEL I MUST RESPOND TO YOUR QUESTIONS. I AM REALLY SHOCKED AT SOME OF

THE NEGATIVE RESPONSES.

I FEEL THAT THE BODY DOES COMPENSATE FOR THE LOSS OF ONE OF OUR SENSES

NOT COMPLETELY AND OF COURSE NOT AS WELL AS THE SENSE THAT WE WERE BORN

WITH.

I AM AN ABI USER I HAVE HAD MINE SINCE JUNE OF 91 LIKE KARINA I TOO

DIDN'T WEAR IT MUCH IN THE BEGINNING AS I DIDN'T FEEL IT WAS THAT MUCH HELP.

BIG MISTAKE IT TAKES TIME FOR OUR BRAIN TO RELEARN HOW IT RECEIVES SOUND

NOW. THEN I STARTED WEARING IT MORE AND THE MORE YOU WEAR IT THE MORE IT

HELPS YOU . I WOULD NOT THINK OF NOT PUTTING IT ON IN THE MORNING WHEN I GET

DRESSED FOR THE DAY. IT GOES OFF AT NIGHT WHEN I AM READY FOR BED.

SOME OF THE REMARKS ABOUT LIP READING REALLY UPSET ME AND I DON'T GET

UPSET THAT EASY AND THIS IS THE FIRST I HAVE FELT UPSET BY A CREWMATE'S

RESPONSE.

I FEEL I AM A GOOD LIP READER BUT WITH OUT MY ABI AM NOT THAT GOOD AT IT.

YES SOME SOUNDS ARE THE SAME AND YES SOME LIPS ARE MORE DIFFICULT THAN

OTHERS TO READ.

SIGN LANGUAGE I HAVE TAKEN COURSES SEVERAL TIMES AND AM NOT GOOD AT

SIGNING AND WORSE AT READING SIGN MY VISION LEAVES A LOT TO BE DESIRED. SO

LIP READING IS THE WAY I CHOOSE TO GO WITH THE WONDERFUL HELP OF MY ABI.

WHEN I RUN THE VACUUM OF COURSE I HAVE MY ABI ON AND KNOW INSTANTLY THAT

IS STOPPED. WITH OUT THE ABI I FEEL IT STOP BUT NOT AS QUICK AS WITH THE

ABI.

I THINK YOU SHOULD ENCOURAGE KARINA TO WEAR HER ABI AND EXPLAIN TO HER

THAT IT WILL HELP HER MORE IF SHE WEARS IT MORE AND LEARNS HOW THINGS SOUND

WITH IT THEY DO NOT SOUND THE SAME AS WITH OUR GOD GIVEN EARS BUT OVER TIME

WE LEARN.

I THINK I HAVE SAID MORE THAN MY 2 CENTS WORTH BUT I THOUGHT THIS MIGHT

HELP AND I WAS ALSO SO UPSET WITH SOME OF THE RESPONSES.

HUGS AND BLESSINGS

CATHERINE

> Question about deafness

>

>

> I tried something with Karina the other day and would like your

> input. Karina was vacuuming her room and I turned off the vacuum

> without her knowing and she just

> kept on vacuuming and didn't seem to know that I had turned it

> off. Don't the deaf learn to tell from the vibrations that it is

> working? Is there something I can

> do to help Karina's awareness level? I always though the body

> made up for one sense being missing. Karina can hear some things

> like a piano sometimes with her ABI

> but in our home she tends to not wear it. I am starting to refuse

> to communicate unless she wears it. With her ABI on she can read

> my lips fairly well without it

> very little communication is understood and we both get frustrated.

>

> JD about my son and the MRI we tried our darnedest to get him to

> have an MRI when he was 17 and he is now 26 and still refuses to

> get one and so our hands are

> tied. I found out this is not uncommon and if he ever decides to

> have any children I will try to get him to go to genetic counseling.

> in Colorado

>

>

>

>

>

>

[Guest guest]

There are so many guessing

> games involved when lipreading that I don't feel it

> is an accurate method of

> communication. It is more a " myth " that needs to be

> dispelled.

>

> Bette

>

Bette,

I lip-read as my main form of communication. I have

come to the conclusion that some people simply

lip-read better than others, but what you say here is

part of it. " Guessing " - i.e., anticipating what

might be said- is a part of lip-reading.

My lip-reading skills were non-existent until I forced

myself to try. If one gives up on lip-reading without

making the effort, it will not develop. IT TAKES

TIME.

I would hope that people here do NOT discourage

lip-reading as a form of communication, especially

with members who are newly deaf or might become deaf.

You don't want them to think there's no use in them

even trying to lip-read, especially if they might

actually be good at it with some time and effort.

I don't know where you got the 20%, but I will agree

that for some, lip-reading does not work. But I work

in a hearing environment and get by fairly well

without sign language. Is it frustrating at times?

Sure. Do I lip-read with 100% accuracy? Of course

not. But lip-reading CAN BE DONE!

__________________________________________________

[Guest guest]

--- Larnard- wrote:

Karina was vacuuming her room

> and I turned off the vacuum without her knowing and

> she just

> kept on vacuuming and didn't seem to know that I had

> turned it off.

If my wife (or my parents earlier) had done this to

me, I would feel embarrassed and more than a little

ticked off. She has to adapt, and it does take time.

The best you can do is GIVE HER THE TIME to make

whatever mental and physical adjustments she is going

to make.

>I always thought the body made up for one sense being

> missing.

This is a slight misconception. The other senses do

not improve, but our body's awareness to them can.

This takes some time as well.

> I am starting to refuse to communicate unless she

wears it.

However frustrating it may be for you, it is 1000

times more so for her. What she needs from you is

PATIENCE. If you have to, write things down to her

with a pad and pen. Keep talking to her, and when she

does not understand you, REPEAT what you said with

patience. If you show your frustration, she will go

into a shell and it will take her longer to come out.

HAVE A SENSE OF HUMOR about it. Once you're both able

to laugh off misunderstood words, that will help.

, I will add this: my parents had to adjust to

my deafness at the age of 21. I know it must have

been a nightmare for them, watching their baby son

have to go through this, but the best thing they gave

me was their patience. They let me come around on my

own. Wearing an ABI might make your feel even more

self-consious. Talk to her about it, and LISTEN to

her reasons for not owanting to wear it.

Best of luck to both of you,

__________________________________________________

[Guest guest]

So, what do you suggest we do?

In a hearing world (last I checked it's what most of us live in)

People don't want to take the time to write to you if they can get away without

it (been there, done that, have the t-shirt)

Most people do not sign.

Some form of communication with other people is required at times.

Lipreading while not perfect, seems like a good compromise.

Pete

> :

>

> Can you lipread men who have hair on their lips?

> Can you lipread people who do not face you directly?

> Can you lipread children?

> Can you lipread people who have accents?

> Can you lipread people who have additional disabilites which make their llp

> movements distorted?

> Can you lipread people when it is dusk?

> Can you lipread people in a dark restaurant?

> Can you lipread people in an ultra bright lites environment?

> Can you lipread people when you are exhausted?

> Can you lipread people when you are ill?

> Can you lipread people when you are on narcotics?

> Can you lipread people who are talking really fast?

> Can you.....

>

> I think you get my drift. We cannot control our enviornment for the majority

> of the day. We adapt to the conditions. Life would be passing me by if I

> depended on lipreading. I have too many other people attempt to lipread,

> think they got the jist of the message and then find out later it was totally

> off...sometimes with disastrous results.

>

> I got the 20% figure from reseach. I also base my opinion on working with a

> WIDE variety of deaf, hard or hearing, deafened and deafblind people everyday.

>

> If you can lipread well, you are one of the lucky ones.

>

> Bette

--

Brayman ICQ # 66709621

" The Great part about being deaf is, it's easy to ignore all the jerks "

[Guest guest]

Hey, I think this is a rather personal attack! you are entitled to your feelings, bette, but I think you could be a little more tactful in voicing them. Marie

Re: Question about deafness

? Is there something I can do to help Karina's awareness level? I always though the body made up for one sense being missing. Karina can hear some things like a piano sometimes with her ABI but in our home she tends to not wear it. I am starting to refuse to communicate unless she wears it. With her ABI on she can read my lips fairly well without it very little communication is understood and we both get frustrated. I find this whole approach abusive. Is the ABI for YOUR benefit or for Karina'a? Think about it! The ABI gives the wearer LESS benefit than a cochlear implant and those are far, FAR from perfect. Let up on this girl or she is very likely to become extremely hostile toward you and blame YOU because she isn't "good enough" the way she is. If you so damn worried about accurate and easy communication, why don't YOU present sign language as an option? I think you just want to do what is easiest for YOU, not necessarily what is best for Katrina. The other senses don't get sharper when a person becomes deaf. I believe a deafened person learns to become more visual oriented but that doesn't mean the person's vision actually improved. Vibrations are going on constantly in our environment and they can confuse a person but I think this is the very least of YOUR problem. Bette

[Guest guest]

I would go along with ; I have tried desperately to learn sign, but as

many Crewbies will be quick to admit, I am ultra lousy; and I know no one

who signs; so if I couldn't lip read, I would be completely lost' I am no

pro, but I think people are better at different things, just like some

people can sing, some paint, some neither! So you have to do whatever

works! marie

Re: Question about deafness

>There are so many guessing

>> games involved when lipreading that I don't feel it

>> is an accurate method of

>> communication. It is more a " myth " that needs to be

>> dispelled.

>>

>> Bette

>>

>

>Bette,

>

>I lip-read as my main form of communication. I have

>come to the conclusion that some people simply

>lip-read better than others, but what you say here is

>part of it. " Guessing " - i.e., anticipating what

>might be said- is a part of lip-reading.

>

>My lip-reading skills were non-existent until I forced

>myself to try. If one gives up on lip-reading without

>making the effort, it will not develop. IT TAKES

>TIME.

>

>I would hope that people here do NOT discourage

>lip-reading as a form of communication, especially

>with members who are newly deaf or might become deaf.

>You don't want them to think there's no use in them

>even trying to lip-read, especially if they might

>actually be good at it with some time and effort.

>

>I don't know where you got the 20%, but I will agree

>that for some, lip-reading does not work. But I work

>in a hearing environment and get by fairly well

>without sign language. Is it frustrating at times?

>Sure. Do I lip-read with 100% accuracy? Of course

>not. But lip-reading CAN BE DONE!

>

>

>

>

>

>

>

>__________________________________________________

>

[Guest guest]

I work with a WIDE variety of people with hearing loss, , from deaf babies to born deaf people to old people who are losing their hearing as a result of the natural aging process. I probably come in contact with more hard of hearing and late deaf people than any other group.

Bette

[Guest guest]

CATHERINE - PLEASE HELP ME TO UNDERSTAND. YOU ARE VISUALLY IMPAIRED AND YOU DEPEND ON LIP READING???

Bette

[Guest guest]

Marie - are you asking what I personally use for communication or what I would suggest using to people in general? My point is that lip reading is very limiting and one might benefit from using each and every means of communication available to them....combination of writing, captioning, sign, lip reading (if you can do it), residual hearing (if you have any), whatever....

I was at a state convention for the deaf this weekend and there was a woman who was losing her hearing. She was NOT culturally deaf and had just started to lose her hearing when she was 38 years old. Her speech discrimination ability did not allow her to really understand speech with the use of a hearing aid and she wanted more. She is now learning sign from a deaf tutor and takes every opportunity to associate with signers that she can. I admire her greatly as it must have taken lots of guts to come alone to this convention of deaf people. She was provided with her own interpreter who helped facilitate all communication during the convention using basic signs, some lip reading, some writing...whatever worked. Cool.

Bette

[Guest guest]

First of all, Marie, I didn't call anyone any names and I don't think you need to call me a jerk. You want people to be polite on this list but apparently you feel it is fine to resort to name calling. Can't have it both ways, dearie. If you want people to be courteous to you, you might behave the same way toward them.

Please do NOT assume you know anything about me. You obviously don't so please do not say things that are not true about me. I work with ALL RANGES AND DEGREES OF HEARING LOSS...BABIES BORN DEAF, BABIES BORN HARD OF HEARING, PEOPLE BORN DEAF, PEOPLE WHO LOSE THEIR HEARING LATER IN LIFE DUE TO VARIOUS REASONS, OLD PEOPLE LOSING THEIR HEARING AS RESULT OF PRESBYCUSIS, ETC. These people communicate in a variety of different ways and prefer a variety of communication modes.

Is all this clear now, Marie, or do I need to further explain this concept to you? Hmm???

FUNNY YOU MENTION SIGNING IN THE DARK....YUP!! I CAN UNDERSTAND MY HUSBAND WHEN HE SIGNS IN THE DARK BECAUSE I AM ABLE TO RECEIVE TACTILE SIGNS.

ANY OTHER QUESTIONS OR INSULTS MARIE???

Bette

[Guest guest]

,

What a beautifully caring reply to , Karina's Mom. As you know, the

results of these surgeries requires the affected and their loved ones to

adjust and be patient together no matter what the implication. You surely

gave some encouragement. Vicki

[Guest guest]

But what if you HAVE tried sign language; taken classes, bought CD Roms, rented videos, etc. But you are no good at it, and no one you know uses it?? I mean what good is it if you can sign, if NO ONE you associate with uses it? Marie

Re: Question about deafnessWhy not try sign language? You might be surprised just how popular it has become and with the ADA passage and enforcement, most agencies and services need to provide interpreters. Bette

[Guest guest]

I would really like to meet her! Someone said she works with the born deaf;

that is so totally different than us; sure, they exist in a culture where

everyone signs; you and I exist in a cultlure where NO ONE signs, but

everyone talks! What a jerk! Marie

Re: Question about deafness

>>

>>

>> >There are so many guessing

>> >> games involved when lipreading that I don't feel it

>> >> is an accurate method of

>> >> communication. It is more a " myth " that needs to be

>> >> dispelled.

>> >>

>> >> Bette

>> >>

>> >

>> >Bette,

>> >

>> >I lip-read as my main form of communication. I have

>> >come to the conclusion that some people simply

>> >lip-read better than others, but what you say here is

>> >part of it. " Guessing " - i.e., anticipating what

>> >might be said- is a part of lip-reading.

>> >

>> >My lip-reading skills were non-existent until I forced

>> >myself to try. If one gives up on lip-reading without

>> >making the effort, it will not develop. IT TAKES

>> >TIME.

>> >

>> >I would hope that people here do NOT discourage

>> >lip-reading as a form of communication, especially

>> >with members who are newly deaf or might become deaf.

>> >You don't want them to think there's no use in them

>> >even trying to lip-read, especially if they might

>> >actually be good at it with some time and effort.

>> >

>> >I don't know where you got the 20%, but I will agree

>> >that for some, lip-reading does not work. But I work

>> >in a hearing environment and get by fairly well

>> >without sign language. Is it frustrating at times?

>> >Sure. Do I lip-read with 100% accuracy? Of course

>> >not. But lip-reading CAN BE DONE!

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >__________________________________________________

>> >

[Guest guest]

--- Marie Drew wrote:

what good is it if you can sign, if NO ONE

> you associate with uses it? Marie

This is exactly why I stopped my sign training when I

was 21; the thought hit me- " Who am I going to use

this with? " In high school, I had the choice of

French or Spanish as my foreign language requirement.

Living where I live, the choice was obvious! Learn a

language half the people speak, so I can understand

when they're talking about me or learn a language

I might use if Quebec ever invades Texas.

Same with sign (for me). Living in a small town, no

one knows sign other than maybe the alphabet. So.....

To each his own!

__________________________________________________

[Guest guest]

--- Marie Drew wrote:

what good is it if you can sign, if NO ONE

> you associate with uses it? Marie

This is exactly why I stopped my sign training when I

was 21; the thought hit me- " Who am I going to use

this with? " In high school, I had the choice of

French or Spanish as my foreign language requirement.

Living where I live, the choice was obvious! Learn a

language half the people speak, so I can understand

when they're talking about me or learn a language

I might use if Quebec ever invades Texas.

Same with sign (for me). Living in a small town, no

one knows sign other than maybe the alphabet. So.....

To each his own!

__________________________________________________

[Guest guest]

In a hearing world (where they're in the majority of the population) people

don't take time to write, so does that make it right!? And if you ask them

to lip read, sometimes they think you're dumb and over emphasize their lip

movements, " ssssiiiit oooovveeer theeeree pleaaaase " . I don't know about

some of you guys that to me, that's down right insulting!!! The majority

don't know how to sign, and that is fine, so when I ask them to write what

they're saying down, they get mad or annoyed!!!

I agree with though, you must look at everything with a sense of

humor, because if you don't, you'll likely to go " postal " on someone. And I

also agree with again in him saying, " to have patience " because that

really is the key. , I know you have your frustrations, but your

daughter has frustrations a thousand fold. So, please, be patient with her.

Thanks,

Mark

----Original Message Follows----

Reply-To: NF2_Crew

To: NF2_Crew

Subject: Re: Question about deafness

Date: Mon, 25 Jun 2001 17:37:21 -0400

So, what do you suggest we do?

In a hearing world (last I checked it's what most of us live in)

People don't want to take the time to write to you if they can get away

without it (been there, done that, have the t-shirt)

Most people do not sign.

Some form of communication with other people is required at times.

Lipreading while not perfect, seems like a good compromise.

Pete

> :

>

> Can you lipread men who have hair on their lips?

> Can you lipread people who do not face you directly?

> Can you lipread children?

> Can you lipread people who have accents?

> Can you lipread people who have additional disabilites which make their

llp

> movements distorted?

> Can you lipread people when it is dusk?

> Can you lipread people in a dark restaurant?

> Can you lipread people in an ultra bright lites environment?

> Can you lipread people when you are exhausted?

> Can you lipread people when you are ill?

> Can you lipread people when you are on narcotics?

> Can you lipread people who are talking really fast?

> Can you.....

>

> I think you get my drift. We cannot control our enviornment for the

majority

> of the day. We adapt to the conditions. Life would be passing me by if

I

> depended on lipreading. I have too many other people attempt to lipread,

> think they got the jist of the message and then find out later it was

totally

> off...sometimes with disastrous results.

>

> I got the 20% figure from reseach. I also base my opinion on working

with a

> WIDE variety of deaf, hard or hearing, deafened and deafblind people

everyday.

>

> If you can lipread well, you are one of the lucky ones.

>

> Bette

--

Brayman ICQ # 66709621

" The Great part about being deaf is, it's easy to ignore all the jerks "

[Guest guest]

Marcus I love , and the rest of you. This is simply an observation. In Vegas I

was astounded at how many said they did not sign but used lip reading, then,

could not hold a conversation without writing on paper. Being total deafened

makes speech reading 100 times harder than if you were just HOH, I cannot

believe you guys are getting these convrsations simply by speechreading. i'd

bet you miss a lot more than you realize and people often have to clarify in

writing. In the case of at work, well you cant expect people to sign so you

have no choice, but in marcus and nathans case, a teacher and a boss man, they

are in control of the talking most of the time, i too can speech reach if im

asking the questions and can anticipate an answer. but its impossible to be

spontaneous. and at home, using sign with family ad friends, even simply

finger spelling has kept me sane and lines of communication open and allows N

OCCASIONAL SPONTANEOUS CONVERSATION. I would not be happy writing everything

out 24/7. And I know the limits of speechreading. I'd like to teach a class

tonext years con's attendees.

> Wrote : I lip-read as my main form of communication.

>

> Me too , I run a company this way, in fact I have to look the other

> way when the Mrs is lecturing me about stuff. We only occasionally use the

> finger spelt alphabet .

> Example : Mrs speaks and I interpret as : " You done it now, your in deep

> spit.... "

>

> Now this makes no sense to me at all so I get the Mrs to clarify signing one

> letter at a time.

>

> Under the thumb and loving it DoWnUnder

> Marcus

>

>

>

>

>

>

>

[Guest guest]

Hi All,

I hesitate to post on this subject because it has gotten pretty hot here.

Let me share that rarely wears her hearing aid at home. She can

pretty much understand everyone else's voice without it-except for mine.

(What teenage girl wants to listen to her mother?!) Often what happens is

that I say something to her, she turns to (or ) and asks what I

said, and they end up being her " interpreters " . This works great for

but is very annoying to and because they have to take

responsibility for her communication. Now, if goes completely deaf,

I don't think they will object to interpreting for her at times, but

communication is a two-way street.

I told at one point that if she didn't wear her hearing aid at

home I wasn't going to make anyone repeat themselves or sign to her. (For

the record, she told us that since her recent surgery, the area behind her

ear is a little sensitive and that's why she doesn't wear the aid at home, so

I rescinded that ruling.) Some of it was just adjusting to using a hearing

aid in general though. That said, she still needs to ask me-or whoever she

didn't understand-intead of always depending on her siblings to interpret for

her. Anyone here will repeat or sign to her or both. Communication is high

priority around here and she is well aware of that fact.

When all is said and done, as lousy as it is IS going to have to

take more responsibility for communcation than people around her. That's the

way it is. Life isn't fair and I can't fix it for her. Under the

circumstances I think my job is to help her learn to deal with it as

reasonably as possible. That's what most of us who have children seem to be

trying to do.

...Donna

[Guest guest]

Wrote : I lip-read as my main form of communication.

Me too , I run a company this way, in fact I have to look the other

way when the Mrs is lecturing me about stuff. We only occasionally use the

finger spelt alphabet .

Example : Mrs speaks and I interpret as : " You done it now, your in deep

spit.... "

Now this makes no sense to me at all so I get the Mrs to clarify signing one

letter at a time.

Under the thumb and loving it DoWnUnder

Marcus

[Guest guest]

Yeah Marie, and your reply was nice too . My feelings is you dont have to

learn ASL, or even tons of sigss, even simple fingerspelling is much better and

faster than writing out ever single word. I find Most know fingerspelling but

met a few would preferred to write out EVERYTHING and it seemed like throwing

in a few simple signs wud have made it flow much better. I do not sign ASL, I

use signs in eenglish word order, I do not socialize with deaf either, my

family learn very basic signs so they cud talk to me. I cannot imagine not

using it.

> Hey, you teach, I'll sign up! The only comment I will make is I get by

> mostly by speechreading also, as I know no one deaf in the area; I do so-so.

> But at the NF2 Con, where many people have facial paralysis, I am clueless.

> Speechreading does not work; that is the only reason I would like to learn

> sign! Marie

> Re: Question about deafness

>

>

> >Marcus I love , and the rest of you. This is simply an observation. In

> Vegas I

> >was astounded at how many said they did not sign but used lip reading,

> then,

> >could not hold a conversation without writing on paper. Being total

> deafened

> >makes speech reading 100 times harder than if you were just HOH, I cannot

> >believe you guys are getting these convrsations simply by speechreading.

> i'd

> >bet you miss a lot more than you realize and people often have to clarify

> in

> >writing. In the case of at work, well you cant expect people to sign so you

> >have no choice, but in marcus and nathans case, a teacher and a boss man,

> they

> >are in control of the talking most of the time, i too can speech reach if

> im

> >asking the questions and can anticipate an answer. but its impossible to be

> >spontaneous. and at home, using sign with family ad friends, even simply

> >finger spelling has kept me sane and lines of communication open and allows

> N

> >OCCASIONAL SPONTANEOUS CONVERSATION. I would not be happy writing

> everything

> >out 24/7. And I know the limits of speechreading. I'd like to teach a

> class

> >tonext years con's attendees.

> >

> >

> >

> >

> >

> >> Wrote : I lip-read as my main form of communication.

> >>

> >> Me too , I run a company this way, in fact I have to look the other

> >> way when the Mrs is lecturing me about stuff. We only occasionally use

> the

> >> finger spelt alphabet .

> >> Example : Mrs speaks and I interpret as : " You done it now, your in deep

> >> spit.... "

> >>

> >> Now this makes no sense to me at all so I get the Mrs to clarify signing

> one

> >> letter at a time.

> >>

> >> Under the thumb and loving it DoWnUnder

> >> Marcus

> >>

> >>

> >>

> >>

> >>

> >>

> >>

[Guest guest]

> Marcus I love , and the rest of you. This is simply an observation.

In Vegas I

> was astounded at how many said they did not sign but used lip

reading, then,

> could not hold a conversation without writing on paper.

, Are you talking about holding a conversation with Crewbies or

with their spouses or with guests like Gwen or with people in the

hotel lobby or... ? If you were judging us based on the first, then

your observation seems valid to me, but I don't encounter many

Crewbies 'cept for through this mode of communication. Daily

face-to-face conversations (or random chats at parties--and yes, I

have had some spontaneous ones... it just takes a little improvisation

as you go!)) are with people who don't know ASL (although some use

some pretty funny signs sometimes before trying to think up other

words to use... or repeating themselves more slowly another time... or

fingerspelling the beginning of the word that I'm getting stuck on...

or writing things down for me... ). People have really surprised me

in their willingness to try new things ~with~ me. My biggest hurdle

has been my own feelings of infringing on their enjoyment (but I

usually have some pretty funny stuff to add... and when I am feeling

decent, I usually enhance the mood of where I am just from being there

because I make people aware of my enjoyment by telling them since I

know my face is deceptive). Day-to-day life is a whole other ballgame

than Vegas! (think of how exhausted everyone gets in Vegas...

although it's a positive experience as long as we're all willing to

do what it takes to communicate with each other 'cause we've been

there, I don't think it's representative of how people fare with

lipreading in their daily lives.) Hugs,

[Guest guest]

> When all is said and done, as lousy as it is IS going to

have to take more responsibility for communcation than people around

her.

That's the way it is. Life isn't fair and I can't fix it for her.

Under the circumstances I think my job is to help her learn to deal

with it as reasonably as possible. That's what most of us who have

children seem to be trying to do.

>

> ...Donna

Hi Donna, Trust me, it's not going to get by that she is

going to have to take the bulk of responsibility for communication

than people around her. She has probably already picked this up from

observing Fred. I think you may consider giving her a break while

she's at home so she can get charged up for when she's around people

who haven't had extended contact with her. You all should be working

with her to find out what works best for her at home. Kids (and

adults) need a break sometime! (And yes, I think their need for

relaxation at home outweighs that of their parents or siblings who

don't have to deal with the stress of taking the bulk of

responsibility for communicating.) Add NF2 to the hearing loss and

we're talking major stress if an individual doesn't have a time/place

when/where they can relax their efforts (without shutting themself off

to their closest loved ones). I agree your job " is to help her learn

to deal with it as reasonably as possible, " but think about what your

definition of reasonable is. I hardly ever expect much from people

(and they usually exceed my expectations in communicating with me),

but a lot of times they would like to do more--they just don't know

how. It's a disservice to teach that she must be as little

bother to people as she can (I guess that kind of " isn't fair to them "

is legitimate, but the unfairness of life for is something she

must just accept). There are ways that she can make people aware of

what helps facilitate communication with her without offending them or

requiring much extra effort from them (it's a lot less frustrating to

try alternative words than to keep repeating the same thing... but

some people never think of it).

I haven't put this in a very nice way of saying it because I don't

have time right now, but it's a perspective that needs to be in the

mix. Sorry if it gets taken the wrong way. Love and Hugs,