A Hearing Loss & Late Deafened Blog

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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  1. I think a piece of the problem starts right in our ENT’s office, and of all people, our audiologist! Mine certainly operate under the belief that with hearing aids and using technology (proprietary Bluetooth) in conjunction with my hearing aids, I can therefore hear as good, or close to as well as I did before my hearing deteriorated.

    I find the loop and Bluetooth to be a pain in the ***. Between pairing it and then getting the perfect combination of buttons pressed in a very certain order, and generally having to do it more than once, I would rather be deaf. The microphone is awesome when attending a talk, demonstration, class, but again — spending 20 minutes (really) trying to wrestle the loop and receiver to pair properly with the microphone is most disappointing!

    The various makers may think they have an awesome product, but I have found them helpful at best, and just totally annoying at worst. Technology can help, but there is no substitution for the original manufacturer’s design.

    One of my big pet peeves is a lack of Apps for the deaf/hard of hearing. Texting is great, but my doctor’s offices are not going to text me. I have recently discovered Youmail, and it helps because it takes a voicemail (impossible for me to hear) and sends it to you as an email. I can activate the message and play it on my iPad and with the sound turned up to maximum and my ear right next to the microphone I can actually hear the message!

    There are next to no Apps. Neither V—— nor Apple have representatives that know jack about Apps for the hearing impaired, but they are certain they must be there if I just look harder! Akkkkk!

    I have one of the newest, state of the art hearing aids (couldn’t afford two) and frankly, it helps in one-on-one situations. Once there are more than two people in the room, or heaven forbid a restaurant or classroom, it is useless.

    I am not satisfied with the attitude of my ENT/Audiologist, and I am very dissatisfied with what technology there is. The opportunities to help the HOH are open, but everyone seems to think what is out there is adequate! Well it is not, and we need to educate out providers about that, IMO.

    I have been admonished by my audiologist for being so dissatisfied, because (in her world) my hearing loss is not that significant! Well it is significant to ME!

    Yes, we all need to lobby for improvements that are actually functional and useful.

    Joann
    Hard of Hearing

    • I hear you, Joann!! I’d like to say that I’ve had more positive experiences with my own ENTs and audiologists, but I’ve not. I’ve seen an ENT and audiologist since age 21 (I’m now 54) and in all those years the focus was hearing aids. I have hyperacusis, so I never could tolerate the volume needed for benefit, so I’ve never worn hearing aids. Many times I was made to feel it was my fault that I didn’t receive much benefit (my expectations were too high), but I’ve tried hearing aids every few years, hopeful that some new technology would help me. I’m now left with little hearing to lose, but I do have some killer lipreading and visual skills that serve me well, and even with little hearing I do okay, so I’ve learned to rely on myself to understand in the world, though if I could find technology to help me, I would use it. That’s why I say captioning is my language and it is what helps me understand in absence of hearing and fabulous technology that restores my hearing to a level that I consider acceptable. I am a candidate for cochlear implants, but am not sure this is the right direction for me, and that’s okay too.

      Once trials were over and it was agreed that I didn’t receive hardly any benefit at being aided, I pleaded with my audiologist (often through tears) to set me on course to find things that would help me live and function in a hearing world. The most I was ever given was a Harris Communication catalogue and sent on my way. I’ve tried some ALDs, but I have the same problem, I can’t tolerate the volume.

      The world it notorious at thinking current technology is a good fix and that if we use it we are restored, and I also find there aren’t many knowledgable people about what’s available and how to use what is available to help the deaf hear. I had to educate AT&T on how to use the iPhone mobilecaptel way back when the first iPhone came out. I’ve had similar experiences Apple reps being clueless. I could go on and on, and I’m sure others could add to this, and that’s why I say in the article that “deafness is fundamentally misunderstood and dismissed”.

      Captioning and CART are the best tools to help me hear in situations where other technology fails. It’s not applicable in all situations, but if captioning were used in all situations where it would make what is being said clear to the deaf, then I’d have much less use for all of the gadget that are supposed to help people hear better. I’m not knocking technology and I know many are helped greatly by hearing and CI, and that’s fabulous if it works for anyone, but I know a lot of people like you, Joann, who have found only limited benefit and little helpful information on getting the most out of what’s out there for the deaf.

      Good luck to you, and I hope you share some of your lobbying experiences with the SayWhatClub. I’ve learned more in the last 5 years from SWC than with a lifetime of ENTs and audiologists. It’s a great group for sharing info and comparing notes.

      Michele Linder

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