A Hearing Loss & Late Deafened Blog

Archive for the ‘advocating’ Category

The Trouble with Hearing Loss Memes

In advocating on September 26, 2017 at 10:09 pm

I look for hearing loss memes to post on our work Facebook page. Some are funny, some are true and some are way off base.  Let’s take a look at memes.

This happens all the time with people who have hearing loss and there’s a variety of reasons. We can sense the other person’s agitation and we still didn’t hear it so we nod and let it go. Or someone is in deep denial still and afraid to admit they can’t hear.

There are a few fixes. One, we ask the other person to rephrase instead of saying “what” or “huh” a third time. We can repeat the parts we heard and ask them to repeat only the words we didn’t hear. If the other person doesn’t know we have a hearing loss, we can start being upfront about it and hopefully their agitation goes down. We can also chose to make these learning experiences for the hearing person. Hearing aids don’t correct hearing like glasses do for vision.

HL meme11

Wrong! They are called hearing ‘aids’ for a reason, otherwise they’d be called hearing miracles.

My high frequency hearing loss prevents me from hearing some consonants so conversations are like the wheel of fortune. Let the other person know that gesturing aids communication or have them use the ASL alphabet to finger spell the word.

HL meme 2

Excuse my language but this one bugs the shit out me. Yelling and shouting does not help most people with hearing loss. Plus, its in the ear (decibel damage there) and the person is not facing me. I hear with my eyes and my ears. Yelling in my ear or at me will only piss me off.  I will reach out, put both my hands on each side of your face and have you face me. That’s the correct way to communicate.

Hold everything! This might be funny to hearing people but let me tell you there are huge mistakes in communication here. You cannot talk to us like normal hearing people, it’s setting us both up communication for complete failure so you too need to change your ways. Number one, get my attention before you start speaking. Number two, be sure you face me so I can see what you are saying too.

For the hard of hearing people; tell the hearies in you life to face you. Be upfront about your hearing loss and your needs. Don’t just say “I’m hard of hearing,” tell people what you need to facilitate communication. Ask for a booth or a corner table at a restaurant to help block out some noise. Make sure your hearing aids have a program for noisy situations (the program should drop the noise level a few notches and have microphones on focus forward). Sit in well lit areas so you can see what’s being said even if you don’t think you lipread.

HL meme 7

Turn up your hearing aid! He said, “your money or your life,” not your money or your wife.

Um, how is he supposed to “hear” through a mask? I’m sure he uses lipreading with his remaining hearing. Volume will not help, lipreading and proper enunciation makes a big diffidence.  Does the guy with hearing loss know how hears, does his wife? Have they been properly educated about his hearing loss? Do they know hearing aids don’t replace true hearing? I’m thinking they don’t.

There is something to this one. What I heard compared to what was said is often a lot more fun! As long as we both have a sense of humor, it’s lots of fun. Go with it and laugh.  Another round please waiter!

Hearing aids pick up all kinds of noise, not just speech and it can be awful. It will make me clench my teeth so hard I can’t concentrate anymore. Maybe we had too much noise all day and we just need a break. Or we were lipreading for hours and need to rest the brain which brings me to…

HL meme 5

It is so much work and so tiring. If I’m already tired, there’s no way I can keep up so please excuse me from certain social activities at this point. I’ve learned my limit.

HL meme 12

Don’t we wish! Why did hear that and not that? I don’t know but it’s not selective hearing I promise you that. Maybe good acoustics help or the rotten acoustics wrecked my hearing. Maybe I was looking at you and maybe I wasn’t. Maybe you enunciated better than usual or your mumbled. There are so many variables when it comes to hearing loss.

HL meme9

Without captions or a hearing loop I can’t hear you in certain situations. If you want to include me and other hard of hearing people then please accommodate us, and we’re happy to go out to those lectures, pep rallies and workshops. Otherwise you get “what” and we feel isolated in a crowd.

Hearing loss still has too many misconceptions. There’s still a lot of educating to do and our job is to correct them. If you are hard of hearing please advocate for yourself because when you do, you educate the hearies. Figure out what is is you need to hear, state it and stand by it. We all deserve it.

Hearies, it takes too to make communication work. Do your part too because we did not chose hearing loss, hearing loss chose us.

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Wishing Backwards: 10 Things I Wish I Had Learned Sooner

In advocating, Audiologists, captions, Coping Skills, deaf, Hearing aids, Hearing Loss, Life, Lip Reading, Partially Deaf, SayWhatClub, Speech Reading, Support on April 1, 2017 at 3:57 pm

By Michele Linder

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SayWhatClub is such a wonderful place, and many of the articles I write for the SayWhatClub Blog come from posts to my home list, Connect. We get into some good discussions and share valuable info with each other.

A fellow Connector asked, “What kinds of things should you have learned sooner?

For me, this question takes me back to childhood—growing up poor in a family headed by a struggling (in more ways than one) single mother, abandoned by a father I never met, and striving to please and emulate a deaf grandmother who was the most capable and loving person I’ve ever known—and having some traumatic experiences (not related to hearing loss) to work through.

I most likely began losing my hearing long before I flunked the hearing test during the public school screening in grade school. The result was a visit to the county clinic. All I remember of the appointment is that the doctor told my mother I was very proficient at lipreading—it was likely I had had a hearing loss for quite a while—there wasn’t much to be done for “nerve damage” (this was the 1960s), and that as an adult I’d likely be deaf and would need to learn sign language.

That day was the last time my hearing loss was talked about in any meaningful way, and it was the one and only time, during childhood, I saw a doctor for it. I continued to flunk the hearing screenings at school, but I got smart… if I knew about test day ahead of time, I’d conveniently fake a stomach ache and stay home. What kid wants to take a test they can never pass?

On my own, I learned how to live in a world I couldn’t fully hear. I relied on lipreading and other visual skills–anticipatory and observation.

10 THINGS I WISH I HAD LEARNED SOONER

1. I wish I had had a good advocate to model after. I didn’t even know I could advocate for myself, nor was I aware I should.

I purposely didn’t include mentor here, as I had a fabulous mentor in Grandma. She was also a lipreader and did not know or use sign language to communicate. She finger spelled on occasion, though, and she taught my sister and me. The fact that she was so capable is part of what allowed me to consider that hearing loss wasn’t going to be a deal-breaker in life.

I went through my entire public school education without many people knowing that I had a severe hearing loss. I was a good faker and I had a super power (I wasn’t even aware of) where my brain would swoop in and take over for my ailing auditory nerve, so only a few close friends knew. I wasn’t actively trying to hide the fact that I had trouble hearing, as much as I simply didn’t give it much attention. There were much harder issues in life to deal with, so the top spots on my list of things to overcome were already taken.

2. I wish I had realized sooner that faking and bluffing my way through life wasn’t a positive to anyone, especially me. Enough said.

3. I wish it had occurred to me sooner to apply the same skill I used to overcome other challenges to my hearing loss. I worked through many things to become a well-adjusted adult, but it never occurred to me until much later in life that I could apply the same to my hearing loss challenges. I used some really good therapeutic approaches (unbeknownst to me at the time) to change what I didn’t like. Among them, “exposure therapy”.

When it did finally occur to me, it was life-changing. In a situation where I hadn’t handled myself well, I’d think about what I might have done differently for a better outcome. Once I came up with some things to try, I’d take myself out on field trips to experiment.

Note: I only went on field trips on days when I was feeling adventurous and in a good frame of mind.

Example: The confusion over what to call yourself–deaf, hearing impaired, hard of hearing, half-deaf, partially deaf? In my experience, “Hearing Impaired” always made people confused… they didn’t really know what it meant. “Hard of Hearing” caused people to yell at me… they thought shouting was necessary. “Deaf with a lowercase ‘d’” never felt like my word to use, but I tried it and got results. Labels aren’t always necessary, but “deaf “is the most effective, so I’ve become comfortable using it.

However, what I discovered to be most effective is to simply tell people what I need from them.

Example: When checking out at the grocery store, I say “Hi, how are you doing? I need you to know that I read lips, so when I’m looking down to unload my cart, or digging in my bag for my credit card, I’m not going to hear you.

Telling it like it is goes a long way to normalize interaction and communication. People see you as capable and the fact you can’t hear becomes a non-issue. Gone are the awkward situations at the grocery check-out.

4. I wish I had learned sooner that it’s okay to question the expertise of audiologists and doctors. This one is not meant to bash all audiologists and doctors, it’s more of a commentary on my own naiveté, as I put too much trust in clinicians I considered experts. I assumed they had my best interest in mind, without fail, and if there was something else out there to help me, when hearing aid trials proved less than beneficial, they would be aware of it and inform me about it.

Many of the audiologists I saw during the thirty years I tried hearing aids were nice enough, but none of them were what I would call exceptional, yet it didn’t occur to me that I could change audiologists if I wasn’t satisfied… I thought I had to see whomever I was referred to… it seemed traitorous to go elsewhere.

If you’re not getting satisfactory results, then it’s perfectly acceptable to look for someone who is a better fit for you. Joining SWC is what opened my eyes. I learned that some audiologists had incentives to push certain brands and models with most bells and whistles, whether you needed them or not, as they made more money on what was more expensive. To counter, I heard from others who sang the praises of their exceptional audiologists. It made we wonder what difference it might have made had I found someone exceptional?

5. I wish I had become aware sooner that it’s not my fault that I can’t hear with hearing aids. My lack of success isn’t a failing on my part, but sometimes it seemed as if my audiologist was implying that I was the problem. I tried hearing aids from age 21 to age 50 (the year I qualified for cochlear implants) and they simply didn’t give me the benefit I needed. I learned very late that this was probably due to hyperacusis—an intolerance of every day sounds. However, I didn’t learn about hyperacusis from an audiologist, I learned about it from SWC, and then later I was diagnosed at Mayo Clinic with severe hyperacusis.

6. I wish I had found a support group sooner. I was 48 years-old when I found SWC by stumbling onto a SayWhatClub newsletter article someone had reposted on their blog.

At the end of each and every hearing aid trial, I would ask my audiologist (sometimes through tears) what else could I do since hearing aids weren’t working for me. The most I ever got was a Harris Communication catalog shoved at me with no recommendations. The audiologists and ENTs I saw were not equipped or even knowledgeable about what to do when hearing aids don’t work. There is a huge gap between the medical community and those in the know about hearing loss.

SayWhatClub, and other groups focused on hearing loss, is part of what fills that gap, because there’s nothing like getting support from others who don’t have to imagine what your life is like, they know, because they live it too. You can find some really valuable information from groups like ours.

7. I wish I had been more confident in my hearing loss sooner. As a young adult, I let embarrassment and awkward situations deplete me. Had I not been a young mother (I had my first child at age 23), or an adventurous soul, I might have suffered more isolation and depression than I did. When you have a family, four young kids (I had my last child at age 29) depending on you, and you’re moving around a lot with a husband in the military, you don’t let a little thing like hearing loss get in the way. You find ways to live with it. I continued to ignore my hearing loss and didn’t put it “out there” like I should have. Looking back, I think I was happy to have such a wonderful diversion.

8. I wish that I would have recognized sooner all of the things I’m really good at because of my hearing loss. I credit SWC for shining a light on how really good at coping I was, even as a kid left on their own, and I possess a lot of good skill because of hearing differently. Sometimes you have to see things in others before you can recognize them in yourself.

9. I wish that I had learned sooner that apologizing for not being able to hear isn’t necessary. Many people with hearing loss are diffident and apologetic, and I was one of them. I felt as if I was inconveniencing others when I failed to understand and would panic if a repeat was no help. This was a really hard thing for me to overcome, and it’s the same for a lot of people with an invisible disability.

10. I wish I had learned sooner that telling people upfront that I can’t hear is the key to everything. When you do, you’re taking charge and heading off the great unknown. I used to wait for trouble and then disclose, but that’s backwards. Disclose, in the way that is most effective and comfortable for you—it won’t be the same for everyone. Once people know you can’t hear and what you need from them, it sets a tone for successful communication. It’s the magic formula for having good days vs. bad days. It’s what allows you to be who you are in spite of being different.

I’m pretty confident and capable these days, and I credit SWC and volunteering for much of that. That’s not to say I’m always confident and never have a bad day—I still have days where it’s just better if I stay home, and likely always will—however, I don’t think I would be as far along as I am if I hadn’t volunteered with SWC and as a captioning advocate. I started out volunteering because I wanted to pay forward what others in SWC did for me when I was down, but I soon realized I was helping myself far more.

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