Advocating for Self Archives - Page 2 of 9

Wishing Backwards: Ten Things I Wish I Had Learned Sooner

Posted on April 1, 2017March 26, 2018 by iseewhatyousay

By Michele Linder

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. I grew 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 observatory.

Ten THINGS about hearing loss I WISH I HAD LEARNED SOONER

1. I wish I had had a good advocate to model after.

Advocating for myself wasn’t something I was aware I could or should do.

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 was a good faker, and I went through my entire public school education without many people knowing that I had a severe hearing loss. My super power (that I wasn’t even aware of) was 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.

After working through many other challlenges, 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 asked 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 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. 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. I had my first child at age 23. Had I not been a young mother or an adventurous soul, I might have suffered more isolation and depression. 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 how I’ve benefited from my hearing loss.

SWC shined a light on how really good at coping I was, even as a kid left on their own. 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. This would send me into panic if a repeat was no help. This was a really hard thing to overcome. 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 if I hadn’t volunteered with SWC, and captioning advocate. I started out volunteering because I wanted to pay forward what others did for me when I was down. Soon realized I was helping myself far more.

Navigating A World That Assumes You Hear: How to Deal With Not Being Able to Hear

Posted on March 8, 2017February 23, 2018 by iseewhatyousay

By Michele Linder

At whatever stage in life you came to hearing loss, it’s likely no one gave you any specific information on how to deal with not being able to hear. No one instructed you on what to expect, how to react, or what to do to make communication easier. There’s no required Hearing Loss 101 class. There’s no orientation for newbies that teaches you how to navigate through difficult hearing situations.

There should be.

I recently posted a great article to our SayWhatClub Facebook Page that I read on The Mighty, a website that publishes “real stories by real people facing real challenges”. In the article, To the Girl Who Saw Me Struggle to Communicate, the author describes a process she’s gone through “hundreds of times” throughout her college career—standing in line at the bistro in the busy student café rehearsing her order before it’s her turn at the counter.

“I’ll admit to wondering… if this situation is something she’s dealt with “hundreds of times”, why isn’t she better at it?”

I’m going to break this simple scenario down for you. I spent several decades letting these very simple situations turn unpleasant, frustrating and awkward.

Yes, I still assess situations that are new to me. I rehearse, and use my super powers (lipreading, anticipatory and observation skills, etc.) I do all I can to make things go more smoothly. No longer am I on pins and needles waiting for what can, and most likely will, go wrong, because–

I tell people that I can’t hear.

Don’t be afraid, just do it. And, however you say it is fine… for me, I say “Hi there… first, let me mention that I’m a lipreader and I need to see you speak, so please don’t look down while talking or I won’t be able to read your lips. Lipreading is great, but it doesn’t always work, so I may need you to write down what I can’t hear.”, as I hold up my trusty pad and pen. That may seem like a mouthful, but it’s pretty much a given that anyone behind a counter—wait staff, check-out or bank clerk, etc.—is going to talk to you while looking down, so clue them in at the start of things and they’ll know better.

And, speak up when you foresee a problem.

If, when you place your order, the counter person asks for your name, let them know you’re not going to hear them call you when your order is ready. Ask for a plan B. If they make a workable suggestion, great! If not, offer a solution of your own—“I’ll stand over there and watch for you to wave at me when my order is ready, but if I miss it someone needs to come over and get me.”

If something does go wrong and you miss a cue, and the aggravated guy behind you taps you on your shoulder and rolls his eyes…

Keep your cool.

Because the minute you freak out, all the skill in the world won’t be of any use… you’re now so flustered that any ability you had to figure out what’s being said goes out the window.

And, do let rude people know—in as nice a way possible—that rudeness is not helpful.

It’s not something they would want from others, so thank them for getting your attention. Tell them you’re deaf and sometimes miss things. Also tell them the aggravation and eye-rolling isn’t necessary or appreciated.

If you need justification for calling them out…

Consider it a teaching moment.

Express your hope that when they next encounter someone that seems to be not paying attention, consider that they might also be deaf.

“If you do lose your cool, for whatever reason—someone has made you feel “less than” or you’re embarrassed at not hearing and panic—consider this…”

It’s not your fault that you can’t hear.

Stop buying into the misconception that you’re inconveniencing the world because you have different communication needs.

Stop pressing your lips tightly together and glancing at the scuffs on the toes of your black Converse low-top sneakers. No amount of fiddling with your hearing aids or wishing will produce an answer to the mysterious unknown question you didn’t hear. It will never magically appear out of nowhere in written form. But you can…

Have them write it down,

thereby creating your own magic! Hand over your paper and pen, and say “You’re going to have to write that down, I’m not getting it… thanks.” Don’t pose it as a question, simply offer instruction for what you need.

It’s empowering when you realize you don’t have to leave difficult hearing situations to chance. When you actively participate in finding ways to make things play out as smoothly as possible, you’ll likely not need a gentle and helpful soul to swoop in and clue you in… you’ll be able to handle the situation yourself before it turns unpleasant.

However, as the author states, she was having an incredibly stressful week. She was feeling extremely insecure, isolated, and alone with regard to her hearing loss. We all know how that feels. It’s normal to have bad days when we feel vulnerable and don’t handle situations as well as we could. So, there’s no need to beat yourself up about it.

“It’s certainly not my intent to beat the author up in any way, either. I’m really glad she gave the world a window into what life is like with hearing loss. We’ve all had encounters where we’re not in the frame of mind to be our own best advocate. Sometimes we’re just tired of explaining. Her article made me think about my own bad days, and how far I’ve come in my fifty-seven years. What I’ve learned along the way has made me stronger and a better person.”

Hopefully, on those bad days you’ll be as lucky as the author was at crossing paths with a particularly tuned-in person who took it upon themselves to step in and help, and who didn’t make a big deal about it.

Sometimes we, and others, can make hearing loss out to be a bigger deal than it needs to be.

Yes, it is a big deal that one whole sense is not working the way it was designed to work and it affects almost everything you do, especially how you communicate. However…

Take charge!

Actively work on ways to eliminate what makes a situation unpleasant. Think of it as instruction that increases your self-sufficiency, which in turn makes you feel more capable. And, capable is what gets you out in the world to enjoy your life more.

Live more, isolate yourself less. Join SWC for more ideas on how to advocate for yourself.

Most people with a disability want to remain independent and self-sufficient and to feel capable. Don’t you?

The Perseverance of Sound: Part II

Posted on March 6, 2017February 24, 2018 by iseewhatyousay

SayWhatClub (SWC) is pleased to welcome guest writer and SWCer Justin Krampert, a deaf musician, who shares his story of hearing loss, how it has affected his music, and what it has taught—and continues to teach—him. Part I of this series appeared on February 21, 2017.

By Justin Krampert

“I didn’t decide to become a musician until the age of 15, which is quite late.” ~ Evelyn Glennie

At 15 years old, my parents insisted I try a new, digital, ITC hearing aid. Inside, I hated it…the way it felt, how lopsided I felt I heard, the way it sounded, everything. It was assumed that I was wearing it at school, but I just didn’t. High school offered, “Related Arts” classes and we went through Art, Music, Writing, etc. I quickly found that I connected deeply to writing poetry and to group guitar classes. I was a very early reader, which helped my love of literature and especially poetry.

The first time I held a guitar, I knew deep inside that it was the instrument of my calling. The few months we got to study were frustrating, because I wanted to be able to play well so quickly, and getting my hands to cooperate with what my mind heard, was always a task in patience and practice. I was absorbing myself in bands like Nirvana, Pink Floyd, Alice In Chains, Dream Theater, Stevie Ray Vaughan, Type O Negative, Testament, Joe Satriani, and my favourite guitarist, Steve Vai.

In the New Jersey winters, I shoveled driveways to save up for gear. My first acoustic guitar was a beat-up classical from a family friend. My first real electric guitar and amp was a used Ibanez GX20 and 30-watt Crate amp I bought off a friend in my guitar class, who had bought a better guitar for himself.

justin with his guitar — Music dork, 1995 – enjoying some Jazz chords (looks like an A13 to me, haha)!

justin jamming at summer camp — 1996 – jamming with friends at summer camp!

In my junior and senior years, I was very fortunate to take a music theory/composition class with one of the music teachers at the high school, open to a select few. I soaked up as much knowledge as I could, and wrote small guitar pieces along the way. Additionally, I learned about some notation software. I played in a couple bands and we performed during school shows. It always gave me a rush, being on stage. Sure I was nervous, but I was young, inspired, and ready to play. All this time, however, I kept my hearing loss a deep secret. After my teachers found out about it at my IEP meetings, I started wearing my long hair down to cover up the fact that I wasn’t wearing my despised hearing aid.

Throughout this entire time of learning to play guitar, I did so without any hearing aids. I lived in my denial, even though I knew subconsciously that I wasn’t hearing like everybody else did. When graduation rolled around, while other rich kids got cars or other insanely pricey presents from their parents, I wanted a guitar. I had my eye on a certain Fender Strat (cue Wayne’s World guitar store scenes!), and right before graduation, my dad took me to Victor’s House of Music in Paramus, NJ, where I beheld the beauty that I would nickname, “Goldie,” in dedication to our kind, supportive homeroom and photography teacher, Mrs. Goldweber.

“Goldie,” my Fender 1968 Strat Reissue (made-in-Japan, 1999)

My University years, I felt, were most productive, inspiring, and creative. From 1999 – 2006, I kept studying guitar, music theory, and composing. I put my whole hearing loss history behind and reinvented myself. I performed bi-weekly at our newly established on-campus coffeehouses, reading my own poems, jamming with friends, and playing my songs. I really got into some serious guitar study, learning Jazz further, bits of Classical guitar, and just enjoying the good, open years of being a college student.

My hearing loss, I felt, wasn’t so much of an obstacle…but I bluffed a lot and would miss out on dialogue, just letting it slide instead of asking for repeats. I started joining in the drum-circles, learning techniques from percussionist friends and teaching myself other aspects. I went out and bought my first drum, a Remo Earth Djembe. I really liked drumming, because it was even more tactile than guitar. It was loud, and I wasn’t as concerned about a drum being so out-of-tune as apparently a guitar would be (drums tend to hold their tuning for longer periods of time than guitars do). Rhythms would start simply, then build, they would remain constant and steady, more easily accessible to my hearing loss.

justin playing a djembe in a drum circle — 2002 – Drum circle!

On my musical-and-hearing loss journey, though, I continued to keep it a secret…

Tag: Advocating for Self