OT-statement from Deaf ed. course

[Guest guest]

One of my instructors told me she had read that that it is more

disabling to feel that you have to overcome deafness than the

challenge of deafness itself. How do all of you feel about that? I

find it somewhat offensive, as if it is wrong to want to restore as

much of my hearing as possible. I know that, for me, living in a

very rural area, not learning to live in the hearing world is not an

option. I have to be able to function through speech and utilizing

as much of my hearing as I can along with speech reading. There is

no Deaf culture here. The only people who sign are a few nonverbal

kids with autism, and that is very limited SEE, and of course, the

paras who work with them. For me, to accept deafness rather than

trying to overcome it, would be disabling. Thoughts are appreciated

as I am the only pro-CI person in my class of Deaf/HH education

majors.

Thanks,

Beth

[Guest guest]

Hi Beth,

You may forward this response to the instructor who is teaching this course.

I would be interested in his/her reply...

For me, acceptance of my hearing loss/deafness was very, very difficult. I

was diagnosed with a mild hearing loss at age 3 but was able to function

well without hearing aids until I was 15. By then my HL progressed to

moderately severe. Communication became more of a problem...but only in

noisy environments. When my hearing loss reached the severe to profound

range, communicate became a real challenge and frustration!! What allowed me

to continue living with deafblindness was the fact that I learned

alternative communication techniques such as tactile sign (ASL, PSE and

SEE), TeleBraille, FM system, Braille/raised print alphabet card and print

on palm (POP) and Braille real time captioning. If I didn't learn those

techniques, I doubt I would have been able to continue my college education

as I would have had no way of accessing lecture information without some

knowledge of sign or access to technology like FM systems. When someone who

is hearing tells me that deafness is *not* a disability and something that

can be coped with from day to day, that makes me angry!!! What right does a

hearing person have to tell *me* what it's like to be deaf or deafblind?

They haven't a clue and will *never* understand -- even if they have

relatives or friends who can't hear. As you already know, I experienced 2

years of depression. I grew up with hearing for many many years and mourned

the loss of something I could no longer have. Music has been a part of my

life since age 7 and losing that was like losing a part of myself. When I

could no longer hear well enough to communicate with others in a quiet

one-on-one environment (2-3 years ), I had enough and decided to look into

getting a CI. I was tired of being isolated -- especially after living such

an active lifestyle before losing my hearing. If truth be told, I think my

deafness has been more of a handicap to me than my blindness. After I lost

my hearing, I lost most of my childhood and high school friends because they

no longer had the patience to communicate with me via TTY/TeleBraille or FM

system. Even though they never told me so, they saw me as different. I know

this to be true because after I started using relay, they stopped calling me

because relay was too much of a bother. Even though I've been very happy as

a deafblind person, that doesn't mean I wouldn't jump at the chance to get

my hearing back if I could. I'm 13 hours away from having cochlear implant

surgery and I couldn't be more excited!! I want to have social relationships

again. I want to bring music back into my life! I want to hear all of the

sounds I've missed over the past 9 1/2 years of severe-profound hearing loss

and 19 years of hearing aid use. Why can't those of us who want cochlear

implants have that choice just as Deaf people have the choice to use oral or

signed communication? Those of us who have CIs do not want to threaten Deaf

Culture. We want to integrate so that others may understand and respect the

choices that are available to those who are D/deaf or HoH.

Surgery date: 12/22/04 (12 hours to go!)

Activation date: 1/18/05

Deafblind/Postlingual

BTE hearing aid user 19 years

Severe-profound hearing loss 9 1/2 years

[Guest guest]

Beth,

I too am deafblind. Here is my take on things. When something happens

to us that requires some level of coping, and accomodations by the general

public. its a disability.

If deafness is not a disability then why do we have the relay service?

Why do we ahve SSP's and interpreters? And so on.

I accept my deafness. Only so I can take the next step and cope. But,

as one who grew up with mild hearing loss and now deaf, its not possible for

me to " join " the deaf world. I tried learning sign, but half of that

requires you to be among other deaf people. I never felt like I fit in.

I am also blind. I have heard many who grew up in the deaf world, and

later in life also lost vision. They found themselves isolated. They no

longer fit in. As said, when she began using relay, she found she was

losing friends who could not be bothered.

Now I have a CI. Its not a fix for deafness. Its a coping strategy.

learned many...tactile sign, braille, etc. And she will get a CI

tomrrow. We will never be on a level playing field, but without question,

its more level. We do not HAVE to overcome our deafness, our blindness. We

HAVE to accept so we can move on.

There are some blind people who feel that blindess is a " mere nuisance " .

Oh lordy save us. I know where that came from but wont get into it here. I

accept my blindness but I refuse to pretend its anything but what it is...a

disability. If its not a disability, please let me drive a brand new

Jaguar. Or fly a plane.

Anyway, am off my soapbox now.

*---* *---* *---* *---* *---*

The sooner you fall behind, the more time you'll have to catch up.

--

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

[Guest guest]

Hello Beth,

I just had to respond to your letter and tell you I wholeheartedly

agree with your views on deafness. We've all been told that you must

acknowledge the problem before you can change it. Deafness is

something that must be acknowledged before one can learn to cope.

I'm very aware that many in the deaf culture do not consider deafness

a disability but for someone who insists on remaining in the " hearing

world " , there is no choice but to learn to cope. I have many deaf

friends and also learned sign language, but will never be fluent with

my fingers. I've had sensorineural hearing loss all my life; it

began as a mild loss and had progressed to the severe level in my

teens. Today, I'm totally deaf and unable to derive any benefit from

hearing aids. I've been a hearing aid user for 50 years (from age

10) and am now very happy to report I received a cochlear implant

last September. A cochlear implant does not restore natural hearing

but does allow me to learn how to use the sounds I receive. I can

tell you that it has surpassed any hearing aid I've previously worn.

I am always going to be " different " and I embrace my difference from

others. We're all unique in many ways and we should learn who we are

and accept ourselves.....just as we accept others. My decisions are

mine alone and are not intended to be pushed onto anyone. I would

want others to respect me and my choices as I do theirs.

Regards,

Gayle Capps

P.S. You may print this letter for use in your Deaf/HH Education

class.

---------------------------------------------------------------------

In , " ask me I might tell u "

<beth_brittney@h...> wrote:

>

> One of my instructors told me she had read that that it is more

> disabling to feel that you have to overcome deafness than the

> challenge of deafness itself. How do all of you feel about that?

[Guest guest]

The instructor is more tolerant than some of the other students. I

think, but could be wrong, that the instructor doesn't quite believe

how beneficial CI's can be for prelingually deaf adults because she

knows one prelingually Deaf teenager who did not like her CI and

quit using it. I've seen some research that shows that the school

program needs to focus on oral education if the CI user is to gain

full benefit from the CI, especially if the CI user is prelingually

deaf. Of course, I'm told that this research is skewed because it

comes from Advanced Bionics, but it certainly seems logical to me

that to receive the full benefit of a CI, you HAVE to have that oral

educational focus and AV rehab. therapy to help you make sense of

the sounds you are hearing. Of course, that doesn't mean that you

can't supplement the sounds with sign, just that you have to work at

making sense of the sounds, especially for prelingually deaf people

who don't have any reference for what they're hearing. I remember

how hard it was, and sometimes still is, for me to figure out what

I'm hearing because I'm hearing sounds I haven't heard in years.

How much harder would that be had I never heard those sounds at

all? I'm beginning to form an idea for my research/thesis paper. I

may have to do some surveys and research on the benefits received

from CI's based on age of implantation, pre- or post-lingual

deafness, length of time between profound hearing loss and

implantation, type and length of AV rehab therapy, type of

educational program, etc. It would be very involved, but very

interesting and hopefully beneficial.

Beth