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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


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.

I Don’t Want to Go Through Life Getting Plain Toast

In coping strategies, Deafness, Hearing Loss, late deafened, Support on June 23, 2013 at 10:02 am

by Michele Linder

Do you ever wonder what the benefit of joining a hearing loss group is? For me, the most amazing thing has been connecting with others just like me. This is a common theme of newcomers to SayWhatClub… they’ve gone through most of their life never knowing another person with hearing loss. They’ve never experienced the understanding of another who knows what it’s like to be them. This one, simple thing is what has most impacted my life after joining this group.

Several months ago, I read Cheryl Strayed’s “Tiny Beautiful Things”, a compilation of Cheryl’s “Dear Sugar, the Rumpus Advice Column”, and I found much of the advice Sugar gave to the people who wrote to her could be applied to anything in life that is hard.

In COLUMN #44: HOW YOU GET UNSTUCK, the letter writer, “Stuck”, is a woman who miscarried at 6 months and was devastated by her loss… she had many well meaning people in her life who told her she should “be over her loss by now”, and some minimized her struggle in an attempt to push her out of her grief.

Here, in part, is what Dear Sugar told “Stuck”, with some of the specifics stricken through and substituted with words that apply to hearing loss:

“Many of those people love you and are worthy of your love, but they are not the people who will be helpful to you when it comes to healing the pain of your daughter’s death losing your hearing.

They live on Planet Earth. You live on Planet My Baby Died My Hearing Died.

It seems to me that you feel like you’re all alone there. You aren’t. There are women people with hearing loss reading this right now who have tears in their eyes. You need to find those women people, darling. They’re your tribe.

I know because I’ve lived on a few planets that aren’t Planet Earth myself.

The healing power of even the most microscopic exchange with someone who knows in a flash precisely what you’re talking about because she they experienced that thing too cannot be over-estimated. Call Contact your local hospitals and birth Deaf Hard of Hearing Service centers and inquire about support groups for people who’ve lost babies at or before or shortly after birth their hearing. Find online communities where you can have conversations with people during which you don’t have to pretend a thing.”

The SayWhatClub has become my tribe, and five years later I’m still here. Why? Because hearing loss is an ongoing challenge for which I will always need support from someone else who knows in a flash precisely what I’m talking about and going through. Plus, I get so much satisfaction from paying it forward. Though, if I’m honest, I admit to sometimes getting tired of talking about hearing loss. I get a bit worn out by sharing my story over and over, and there are times when I wonder if anything I’m contributing is making any difference to anyone who is reading?

But then one day someone relatively new to the forum emails you to tell you that the way in which you replied to their query made them move further toward finding out what works for them in their hearing loss journey, and that “…you are a clear spot in the forest…” You feel a renewed sense of purpose and find the energy to type the words one more time.

That happened just a few months ago when a new subscriber wrote to my home list to thank everyone for the warm welcome and to express how glad they were to have joined SayWhatClub… happy to be learning things to help them deal with their own hearing loss.

“I love that I’m already learning! …It’s nice to know there are others who understand. I don’t know any people in real life that have hearing trouble.

I am not yet good about starting out by telling people I have trouble hearing them. It’s not that I’m ashamed of it, but I’m just painfully shy in general. I guess I’ll just have to get over that if I want to communicate. At a restaurant this weekend, I ordered a grilled sourdough sandwich. The server said something, I asked her to repeat, I heard “sourdough…white or wheat?” and thought “Neat, whole wheat sourdough.” When I took a bite, I told my husband I was fairly certain that it was plain toast. He said, “Didn’t you hear her say they were all out of sourdough?” I don’t want to go through life getting plain toast.”

Thank you, Tracy, for that jewel!

If you don’t want to go through life getting plain toast, SayWhatClub might just be the tribe for you.


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