A Hearing Loss & Late Deafened Blog

Archive for the ‘late deafened’ Category

What Am I Anyway? By Brenda Cordery

In audiogram, Deafness, Hard of hearing culture, Hearing aids, Hearing Loss, late deafened, Life, Lip Reading, Partially Deaf on September 26, 2013 at 2:56 pm

I’ve been a member of SayWhatClub for several years and during this time the issue of how to collectively label us has been discussed repeatedly. Do we, as a group, call ourselves Hearing Impaired? Hard-of-Hearing? Or something else entirely different? What exactly fits our unique situation, one where each person’s hearing needs hit across a wide spectrum? I’ve had a progressive hearing loss for about twenty years now. When I first had my hearing tested, I had a moderate loss in one ear and mild in the other. I could get by without ever having to say a word about it since my hair covered my ears and I had great speech discrimination. Some of my coworkers and close friends often forgot I wore hearing aids and I admit, sometimes I did too.

But as I got older my hearing changed.

When I started my hearing loss journey, my audiogram looked like a relatively straight line, see the audiogram below:

My first audiogram from October 11, 1994

Audiogram 2

I was fitted for a BTE (behind the ear) Resound hearing aid for only my right ear. Since most of my hearing fell inside the speech banana (seen below), my word discrimination was 100% for both ears.

Audiogram showing the “Speech Banana”

audiogram 1

All of the sounds from the world’s various languages fall on the audiogram in an area referred to as the speech banana. 

Now it looks like a kid’s drawing of a big smile – commonly referred to as a cookie bite loss.  Unfortunately, my hearing now falls outside of the area where speech sounds occur, making it difficult to hide the fact that I have a hearing problem.

My cookie bite audiogram from September 20, 2010

Audiogram 3

Note:  The dots are used as a point of reference and show the results of my hearing test from 2009. 

My hearing has declined to the point where most of my hearing falls outside of the speech banana. Currently my word discrimination is 66% for my right ear and 28% for my left.

I’ve had plenty of years to come to terms with my hearing loss since it’s been a slow process yet I find myself still struggling with the best way to label myself when it comes to public situations.

So here’s a good scenario.  I was recently shopping for back-to-school clothes for my son.  This particular store I was in had background music and the acoustics were such it was as if I were in a gym.  When a lady flagged me to come to her register I wheeled my cart up to the counter and started unpacking my things.  As I set the last of my items down, I glanced up to see the clerk giving me a funny look.  You know, that all-too-familiar one that anyone with a hearing loss knows.  The “waiting for a response“ look, which is usually followed by the “what is this person’s problem” look.

In that flash of a moment, my mind sifted through several options for a response.  Do I go into a lengthy spiel that I now refer to as my “deafologue” —  that introduction of why I didn’t hear to begin with followed by what I need in order to hear?  The store was packed and there was no time for a long discussion.  Instead, I quickly blurted out, “Oh, I’m sorry.  Did you say something?  My hearing aids have a hard time working with all this background noise.”

Several years ago, in this type of situation I would have repeatedly said, “What was that?” over and over ad nauseam.  During this phase of my hearing loss I got tired of hearing myself say that as I am sure all of my family and friends did as well.   Over time, saying “what?” no longer was an option for me.  You can’t ask “what” to something you don’t hear.

I graduated from the “what” stage to the next phase where I acknowledged my loss.  In this stage I said some variation of, “I’m sorry, I have a hearing loss and didn’t catch what you were saying.”  As soon as the words passed my lips I held my breath, hoping for a patient and understanding response.   What I discovered over time was people don’t know how to deal with this gray area.  Hearing they can understand.  Deaf they can understand.  People can grasp absolutes.  But what about those of us that can hear something, even if that something can change on a day-to-day basis?  Hearing is a complicated process, one that can’t easily be explained to a stranger during a brief exchange.  When someone says they are hard of hearing, what does that really mean anyway?

Many times when I’ve told someone, like a store clerk, that I have a hearing loss, they ask me if I read lips. The response I give depends on my mood, but usually I tell them I’m not very good at it.  But if I’m feeling talkative, I might even tell them that in order to read their lips I have to stare at their mouth instead of look them in the eyes, and how I need them to not look down, turn away, or cover their mouth when they talk.  And did I mention I’m still not very good at it?  This will no doubt lead to more questions – ones I don’t – and neither do the people in line behind me – want to take the time to answer.  But you can see where I’m going with this… The term hearing-loss stirs up lots of questions – ones I’d prefer to not take the time to explain when all I’m really trying to do is buy my stuff so I can get out of the store and on my merry way, thank you very much.

Do I sound crabby?  I don’t mean to.  I’m simply trying to demonstrate how difficult it can be to accurately convey your hearing ability, or lack thereof.

What I’ve finally come to realize is that people like to deal in absolutes – black or white.  I can’t understand you.  I’m functionally deaf.  People know that word – deaf.  If you want to get your clerk to shut up, just tell them you are deaf.  They stop talking cause then they realize you aren’t going to hear them anyway.

As much as our society loves to compartmentalize people, the bottom line is there is no one-size-fits-all way to address us.  Each one of us comes into a situation with our own levels of hearing loss and experience in dealing with it.  How we address our needs one day may not be the same the very next.  So while our needs may be constantly changing and might not be the same from person to person, one thing we can do is cut ourselves some slack.  After all, we shouldn’t live by other’s definition of us.  We are so much more than that.

Missing from the Menu

In Accommodations for Deaf, ASL, captions, Closed Captioning, coping strategies, Deaf Culture, Deaf-Blind, Deafness, Disability Rights, Hard of hearing culture, Hearing Loss, late deafened on September 13, 2013 at 3:56 pm

by Michele Linder

kenguru-car-wheelchair

The Kenguru Electric Car allows
drivers to remain in their wheelchairs.
 

I just checked out Mashable’s “10 Ingenious Inventions for People With Disabilities”, and I was quite impressed by many of the the inventions showcased, the Kenguru Electric Car (above) included.  However, I was a bit surprised to see no ingenious invention for deafness.  That omission tells me two things:

One, we have quite a ways to go in providing ingenious solutions for those who can’t hear.

Two, there seems to be a misconception that deafness is something that is easier to live with than other disabilities.

The second thing, for me, is harder to take than the first, because I live it.  I often encounter situations in which it’s glaringly clear that deafness is fundamentally misunderstood and dismissed — If you speak and look according to the perception of what “normal” is, then you should be able to function as such, right?  There are times when the simple use of my voice negates my deafness, even with deaf people.  Further, the success I experience at understanding (the result of lipreading and using the many other visual skills deaf people possess), even in the absence of hearing, adds credence to this misconception.  The better you are at these skills, the less believable it is that you actually have a disability.  I’m still working out whether that’s good or bad, (this might be one of those things that doesn’t fit in an either/or box).  On one hand, many (me included) are amazed at the ability of the brain to hear.  On the other hand, that amazing ability makes it harder to accept that you have needs — the proverbial double-edged sword.

When a person can see another’s barrier, they pretty much accept that the person needs help.  When a barrier is not visually apparent, then the fight becomes “proving” that you have the barrier that you claim to have, and the initial energy of a deaf person is wasted here.  Deafness is tiring.  It’s frustrating, and it’s a daily battle, because a win on Monday, only has to be repeated on Tuesday for the next person who questions whether you actually are deaf, or not.  So, often times people don’t have the needed energy to apply to the first thing.

Beyond the personal, there’s the much broader view that lumps the deaf, deafened, sign language (SL)/cued speech users, oral deaf (if I’ve left anyone out please overlook my omission, as I’m hard-pressed to keep current on what’s politically correct, but even more true is the fact that I don’t care to individualize the groups within the larger number), and the other various levels of hearing loss, altogether.  That number in the U.S. is often cited as being around 48 million, but I was corrected the other day by someone who makes hearing loss their business and they quoted a number of more than 70 million.  What’s a few million?  If 48 million doesn’t get your attention or move you, then 70 million won’t either, and I’m really not interested in yet another debate on the hearing loss front, so I’ll go with “freakin huge”.

If I had time, I could go down the list and research the number of people, in wheelchairs, with paralysis, amputations (upper extremity and otherwise), seizure causing conditions, blindness and other vision conditions such as achromatopsia (seeing in black and white), and autism and related disorders, who were included in each group represented in the Mashable article and slideshow.  Armed with that information, I could present an argument for priority based on numbers, but what would be the point? It’s not about the numbers and who deserves to have technology that improves their life, as we all deserve it, no one group more than another.  It’s like being the parent of multiple children who all have different barriers… one is blind, one is deaf, one has mobility issues, one has autism… who deserves your attention more?

Yes, there are tools and technologies out there that are invaluable to the deaf — CART, closed and open captions are the first to come to mind. There are also advances being made in the speech-to-text field, but nothing mind-blowingly miraculous as of yet (I’m sure I’ll be corrected if I’m wrong, and I hope I am)… nothing that makes the sound that comes out of a person’s mouth seeable, in an instant, with the accuracy needed for understanding.

Luckily, we do have many talented caption writers who possess a skill level quite close to what I describe in my previous sentence.  Their ability goes leaps and bounds beyond the current speech-to-text capabilities, but, on the whole, captioning isn’t being utilized uniformly and consistently with the level of quality needed.  This blows my mind!  Maybe that’s why there’s nothing magically ingenious happening?  What can we expect if we don’t use the magic we already possess?

For those who know, and are in the field, I’d love to hear from you about the 10 Ingenious Inventions for Deaf People that could have been included in Mashable’s article.  Are there any?

Certainly, we are aware that sign language is awesome, and I give much credit to those whose first language is SL, as we are where we are today, in part, due to their on-going effort to educate us all to the needs of the deaf, but the truth is, the majority of those who need to see speech do not know and use sign language.  Therefore, sign language interpreters or other accommodations that use SL are not viable options for most of us.  That statement is not meant to devalue sign language or oppose it any way, but simply to point out that most of us who have lost our hearing have had life experiences in which SL was not a part of our existence.

What I’m after is this:  What ingenious, cutting-edge, technological invention, that can be used by ALL who need to see speech, are we not yet aware of?  Please share.

Maybe someday the deaf will be able to enter a vehicle that can miraculously turn sound into text on the windshield, or we can project a hologram toward a speaker and have what they say appear to us in a way that is visual?  Until then, we should do everything we can to forward what already works and hope that in the future the energy expended advocating for captioning can be applied to other things that need a voice.

Captioning is my language, and it’s the language of the majority of those millions of Americans, and others around the world, that need to see speech. Maybe if it were applied, without question or opposition, in all instances where it could be applied, deafness would have been among those disabilities represented in Mashable’s article and captioning would have been given the due it deserves?  Until then, we’ll celebrate how other groups are overcoming their barrier with technology, because what is good for one, is good for all. We’re all connected.

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