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Accessibility Connections Hard of Hearing Hearing Loss Personal advocacy

Inclusion for Hearing Loss

What does inclusion look like with hearing loss? A pink cloudy background. A quote by Liz Fosslien, author: Diversity is having a seat at the table. Inclusion is having a voice and belonging is having that voice be heard.

One in five people have hearing loss. The numbers are not going down, they are going to get bigger.  The World Health Organization (WHO) has the most current statistics on hearing loss, February of 2023. WHO predicts that by the year 2050, 2.5 billion people are projected to have some degree of hearing loss. As Julia pointed out in “Our Hearing Partners” blog, if you don’t already have hearing loss, chances are you will experience hearing loss yourself as you age. Start practicing inclusion at home, with family and friends.

People don’t know how to include those of us with hearing loss…until we tell them. It begins with us. While some people come by it naturally, most won’t. There’s a few bad apples out there but once you open up and speak out, you’ll find out most people are good about making sure we are included. They only need to know what we need. 

Join our May 2nd workshop on “Inclusion” at 6:00 PM Mountain time. It’s online via Zoom with CART/live captioning. Register here. 

Inclusion at Home

Chelle: My family of origin are good about including me. My mom projects when talking to me without shouting. She makes sure she’s facing me too. She repeats as needed and will help me with other people as needed. My dad had a hard time speaking up and he often talked like he had a cigarette hanging out of his mouth, even though he quit smoking years ago. My mom would step up often to be my translator when I really couldn’t understand him. Between the 3 of us, it worked. I always felt included with my parents.

My kids are also wonderful about inclusion. When they were growing up, my parents,  sister and my husband made sure they respected my hearing loss. There were a few times they were corrected by an adult, kids will push boundaries. We learned together, I was lucky.

All 3 of my kids will be in their 30’s this summer. My family tends to gather around the kitchen table and everyone gets heard, everyone gets a chance to hear. Similar to me, my daughter is developing hearing loss, though slower than I experienced it. My middle son has auditory processing disorder and my youngest son had issues with cholesteatoma in one ear. In a way, all four of us have problems hearing so we are sympathetic.  

The Kitchen Table

We typically gather at the kitchen table to talk and play cards, since I was kid and the tradition stays. My kids and I are LOUD (my mom and husband run away). We want to make sure we each hear, or maybe it’s our own ears and we don’t understand how loud we are. We like playing games and a couple of our favorites are Cards Against Humanity and New Phone, Who Dis? Both games required reading a card then each playing throwing a card to best match the card read. I almost never hear what they say when reading a card. The kids, and significant others, have learned to read it and then pass it to me to read myself. Nowadays, it’s not just me wanting to read the card. I often pass it to someone else.  

Four people sitting around a wooden kitchen table. Left to right: a young woman with brown hair and glasses looking at her phone. A young man standing up next to her looking down at the cards on the table. A young blond haired boy looking at an older blond haired man who's about to put a card down.
Cards in Chelle’s family. Slow down and allow each other timeto play.

During these times together, anyone is allowed to stop the conversation and ask for a repeat.  Sometimes I throw my arm out across the table and wiggle it around, “Hey wait a minute, what was that?” They’ll repeat as needed. Repeating is an inclusive act as long as it isn’t done maliciously.  

Never say Never Mind

One rule I established early on; “Don’t tell me never mind.” Never mind is exclusive. I’ve had my fits in the past to make sure I’m included. One day a few years ago, we were all out on the lawn in the summer sun. Loud as usual, sitting in a circle with lots of laughter.  I said something on the sly to the other kids, referring to the younger one. I was in his deaf ear. When he asked me what I said, I told him “never mind.” Of course I was going to tell him, I was just having a bit of fun. He practically jumped up out of the chair as he scolded me. “You told us to never say never mind. You have to tell me.” I felt like a proud mama. I should never say that, even in jest. However, I saw him stand up for himself and demand inclusion. That was amazing.  

The family outside, looking at the camera smiling. Two young women with brown hair, the second one with glasses. Three young men, the first with long brown hair, the second with a ball cap and beard with mustache. The third with blond hair smiling.
The “never mind” day, from the kid in the tie dye shirt sitting near the shed door.

It starts with us. We need to tell people how we want to be included. Once they learn from us, they will use that experience to help the next HoH person who comes along.  It gets passed down. 

Tips for inclusion practices at home: 
  • We can explore hearing aids/cochlear implants, if applicable. Remember not everyone benefits from hearing aids.
  • Help yourself by exploring accommodations, technology and communication options. This leads to independence and inclusion. When we find what works best for us, we can confidently go forth and show people how to include us.
    • Try out lipreading, then try American Sign Language. 
    • Experiment with different technologies and choose what works best for you. 
    • Then learn about different strategies from other HoH community members. It’s all pick and choose accommodations and strategies until you find what fits you. When you know, you can help others. Remember, there is no one way. There are options and we each choose what works best for us. 
  • Speak up! Share your knowledge. Share your experiences.  We have to stop being so quiet. We have a voice and we need to start using it. Let others know what we need for better communication. Communication in my family got even better when I started sharing how I hear. (See the sensorineural visuals.)  If you’re uncomfortable telling people, use email or a letter. Then schedule a time to talk about it a day or so later when everyone’s had time to think about their part.. 
  • Be brave. Request repeats. When you’re out in public with friends, ask for assistive listening, captioning devices and/or CART. This is how we will normalize inclusion. Who knows, they may start requesting it with you. Friends and family can benefit from assistive listening too.
  • Share websites/podcasts and books that have information to help friends and family understand how hearing loss works. Start your own blog to share daily frustrations with communication. I did that years ago here and it goes back to around 2010 when I was struggling with  a new level of hearing loss.
My challenge to you:

Start more conversations this week about hearing loss so inclusion becomes second nature.  Education is needed in all areas – at home, work and out in public.

A young man with long brown hair and a checkered mask on. A young blond haired boy with hands in his jacket. A young woman with brown hair and glasses who has the youngest brown haired boy in front of her. A young brown haired man standing to the right of a movie poster.
A family trip to an open captioned movie.
Who doesn’t want to be included?

Julia: Start with, what does inclusion look like for you? Who in your personal circle  stands beside you supporting you and what inclusion looks like for you? 

A while back, I was teaching classes for the state HoH program and we had a homework assignment around self advocacy. When I asked the students how it went, one of them reported they told their friends how hearing loss worked in group dynamics, especially at a restaurant. After that, the friends stepped up and demanded the best seating dynamic in the restaurant every time they went out. One even asked that the music be turned down the minute they walked in the restaurant. They wanted everyone at the table to be included in the conversation! The student realized their opinion mattered. The student was shocked at how fast the friends adopted inclusion practices with no fuss.

Tell Them Your Truth

For most of your friends and family, it is as simple as telling us what you need. It’s explaining your hearing loss. We want your voice. Your opinion matters to us. We will have your back.

A lot happens around our dinner tables. It’s where we share a meal, tell stories, and have lots of laughter. It’s also where we make some of our toughest decisions. This is where hearing loss can be isolating if the family doesn’t change dynamics when you can’t be part of the conversation.

Choose Your Best Seat, Have a Hearing Helper

My grandma sat at the head of the table, which is generally the best hearing spot. My family knew if we sat on her right side, she would hear people talking and use her lipreading skills. Sitting on her left (her deaf ear) meant getting her attention before talking. The kids often sat on her right side so they could easily visit with her. I sat to her right and if she needed help understanding what they were telling her she could look to me to interpret a bit.  This worked well for everyone in our small family settings.

If it’s your table, set it up for success. Have a plan. Is it a large or small gathering? Who is it you want to visit the most? If it’s someone else’s table, call them to set up a plan. If it’s a family meeting with a heavy subject, ask everyone to speak a little slower and allow time for processing. Processing time benefits everyone. It gives the HoH person time to put the sounds together and time for us hearing people to think our thoughts through. Inclusion is setting up everyone for success, allowing better outcomes. 

Grandma with the kids.

My words of wisdom for y’all….

Do not let friends and family leave you out! 

Let me say it again…Do not let friends and family leave you out!  

Do not:

  • Allow them to manage you out of the picture.
  • Let them speak for you, without your permission.
  • Allow them to decide what’s best for you without your input.
  • Let them gaslight you, which is also taking advantage of our hearing loss. “I’ll tell you later.” “Nevermind.” “I never said that.” Especially when it matters.

You deserve a voice. You deserve to be included. Bring yourself to the table, hear and be heard! We will stand right next to you while you do it.

The 3 Golden Rules when talking to someone with hearing loss: 1 Get their attention first. 2 Face them while talking. 3 Be within 6 feet.
These 3 guidelines insure inclusivity.
Inclusion Support

We don’t know what we don’t know.  We learn a lot from others who have hearing loss, who walked the walk already. Follow Hearing Loss LIVE! and join our monthly workshops (no charge, we have CART/live captions). Join other online hearing loss support groups, there’s several on Facebook, Instagram and Reddit. Put the issue to a group and get several good replies, then pick what works best for you. Get to know your tribe, you will feel less alone.

Here are some of our past blogs and podcast topics that may help you. 

Categories
Hearing Aids Hearing Loss

Sensorineural Hearing Loss Visuals

What does hearing loss look like? A sample of what someone might hear who has a moderate high frequency hearing loss. It's a few sentences with a lot of missing pieces, like a code. Blue background with cracks running through it.

What is sensorineural hearing loss? It’s nerve damage to the inner ear, the cochlea, targeting certain frequencies of sounds. This is a tricky hearing loss to have and often misunderstood. Those of us who have it can hear but have a difficult time understanding what we hear.

For example:

  • We hear voices but can’t understand all the words.
  • Depending on the kind of hearing loss we have, we can hear the garbage truck coming down the street but can’t hear the birds, or vice versa.
  • Better understand men than women, or vice versa.
Turn up your hearing aid!

A common misconception people have is that turning up our hearing aids will help us understand better. With a conductive hearing loss volume helps but it doesn’t quite work that way with a sensorineural hearing loss.

Hearing aids help those of us with sensorineural hearing loss but they only help so much depending on the severity of the hearing loss. Technology has improved a great deal in the last 20 years making them better, but they still do not give us back normal hearing.

Types of Sensorineural Hearing Loss

Before we go further, here’s a short description of the 3 different kinds of sensorineural hearing losses. You might also hear it called ‘nerve damage’. Sometimes it’s genetic, sometimes there’s a reason for the hearing loss and other times it’s unknown.

The following are basic descriptions only. To learn more about hearing loss, do your own research and be sure to talk to your audiologist or Ear Nose Throat specialist.

  1. High frequency hearing loss, the classic ski slope loss. This is the most common, why? This group includes noise induced hearing loss and age related hearing loss (presbycusis). It can also come from ototoxic drugs.
  2. Cookie bite hearing losses have a chunk missing from the middle of the audiogram.
  3. A reverse slope hearing loss.

What do these hearing losses look like?

Keep in mind that hearing losses/audiograms are individual. It’s going to be a little different for everyone. The following are to give you an idea of what it looks like.

Volume & Sensorineural Hearing Loss

Hearing aids help. For instance I (Chelle) have a severe high frequency hearing loss. My word discrimination is about 30% without hearing aids. With hearing aids it’s 60%. It doesn’t sound like a big jump but it does make a difference.

I have a profound loss in the high frequencies. Once it’s profound it’s not likely to come back. The audiologist can only turn up sounds so far. No matter what, I am always missing at least the F, S, TH and T sounds in speech.

Overriding Sounds

The problem with volume and high frequency hearing loss is that vowels and other strong consonants can override other sounds I might hear. I like to use the word “shout”. The SH and the T are very hard for me to hear. I might hear the SH sound in a quiet environment with hearing aids on, the T not all. What I hear well is the OU/OW sound. If you yell the word, the only thing I will hear is OW and nothing else. Katherine Bouton’s book title, “Shouting Won’t Help” is truth!

Another example: background noise can override what I can hear. While on an airplane, the jets completely override any speech for me. I am deaf. (Also a sort of blessing because I don’t hear screaming babies or barking dogs on the plane either.)

Filling in the Gaps

Hearing aids help fill in the gaps. Lipreading also fills in the gaps. The thing is, most of us don’t know we are lipreading. I didn’t know I was lipreading for years.

I already told you I have 30% word discrimination without hearing aids, or my eyes. I have 60% with my hearing aids and no eyes. For fun, they tested me with my eyes (this was before I started teaching lipreading) and my hearing aids and I got a 90% word discrimination score. Lipreading compliments technology.

The name “lipreading” is misleading. We aren’t just lipreading, watching the lips and breaking down sounds by shape. That’s why they updated it to “speechreading”. That’s a little better because we do like to use our remaining hearing but it still implies voice and lips. Neither term adequately covers everything we do. We are taking in language holistically; visually with gestures, facial expressions and body language. We are filling in other holes with logic because not all words are lip readable!

We have lipreading classes.

When I tell people I speechread, I get blank stares. When I tell people I lipread, they face me. This is why I still use the term lipreading.

Hearing Loss LIVE! teaches lipreading classes. There are a lot of concepts behind lipreading, other strategies & tools, than just lip shapes. Our Lipreading Concepts class will help you set your stage for better communication even if you don’t go on to Lip Shapes LIVE. Both classes also help hearing family and friends how to improve communication.

Past guest Liza Sylvestre.

A little over a year ago, Liza was a guest with us. She has a video in which she recites a poem they way she hears it. It’s titled, “Wha_ i_ I _old you a __ory in a language I _an _ear.“

Categories
Advocacy Communication Access Communication Practices Communication with Family Connections Emotions, Psychological Stress Hard of Hearing Hearing Loss Self Advocacy Setting limits Uncategorized

Our Hearing Partners

Hearing partners: Get in the know!

Post by Julia Stepp

“Everyone thinks of changing the world, but no one thinks of changing himself.”

– Leo Tolstoy, Russian Writer

Not long ago, I realized I’ve been a hearing partner my whole life. An aha moment during our Lipreading Concepts class recently reminded me I have been practicing hearing loss communication rules since I was a kid. My grandmother would touch my arm so I would look at her, then she’d say, “Now repeat that.” This simple routine started when I was 7 or 8 years old. 

Small Tweaks to Make It Right

Making small tweaks over the years for me and my family when changes in hearing loss happened were fairly simple. I taught my boys lipreading dos and don’ts, “Grandma needs you to face her so she can understand what you’re saying.” My boys taught me at family dinners if you wanted to have a conversation with grandma it was better to sit on her right side. But if you want to be a smart ass, sit on her left side. 

For me, this seems so simple that I struggle to understand why others have trouble getting hearing partners to understand or make changes for simple communication boundaries. Truth is, years of attending hearing loss classes, lipreading classes and listening to my HoH mentors who shared their everyday struggles with communication actually shaped my communication habits. I have had a lot of “aha” moments the past two years building Hearing Loss LIVE! with Chelle Wyatt. Here’s some thoughts I have about how hearing partners can get in the know.

Hearing loss changes communication. Period.

I think a lot about why this gets lost in translation. If hearing loss is new to the equation (or maybe “you’re not there yet”), there is a lot to sort out. There’s grief and the loss of casual conversation. Hearing aids are hard to figure out. Maybe there’s even an employment change (hopefully you contact your state vocational rehabilitation to help with that). Even in this day and age, we fight old stigmas around hearing loss. Neither one of you knows what to expect or what you need from each other. It’s possible you both sweep it under the rug hoping it will be normal again!!

Stop. Breathe. Think.

The first step on this rocky road of hearing loss is to sit down and talk to each other. Even if it’s saying:

  • “I don’t know what to do!”
  • “I’m really having a hard time with (fill in the blank).”
  • “How can I best support you?” 
  • “Honey? You are there. Now what?”

Start the conversation today.

“If you take out the team in teamwork, it’s just work. Now who wants that?” 

– Mathew Woodrin Stover, American Novelist
Gain Insight

When hearing partners get involved, they will find a better understanding of the journey ahead. Getting in the know helps them be better prepared when meeting the next person with hearing loss. If, or when, you as the hearing partner face hearing loss yourself, you will be able to adapt much easier. One in five people have hearing loss folks! One in three at age 65 and one in two at age 75. 

Attending audiology appointments gives hearing partners insight on what type of hearing loss the HoH partner has. If the audiologist practices patient centered care, you will find out how hearing aids help with word discrimination and how it relates to your voice; is your HoH missing low tones or high tones – or both? You will have a better understanding of what hearing aid limitations look like. Take notes and work as partners during the hearing aid trial period, become a team. You can also help with program tweaking, explaining what doesn’t work for the two of you when it comes to communication. 

Lipreading Classes Improve Communication

Take a lipreading class together, that’s how better communication happens. Learn all that goes into lipreading as the hearing partner so you know what changes to make for better communication outcomes. We specifically built our class for you to take together. 

Practice the 3 Golden Rules with everyone.

Okay, y’all know we love the three golden rules here at Hearing Loss LIVE! The truth is people with hearing loss can’t do their part until they know their own communication preferences. A hearing partner can’t do their part if the HoH doesn’t know what they need, and many people with hearing loss don’t know what they need! This loop could go on forever. Stop the cycle now. 

Make this your daily worksheet for communication boundaries/habit change that you can use with everyone:

  • Did you get their attention?
  • Did you face them?
  • Are you within six feet?

Practicing the three golden rules of communication with every one takes care of a huge chunk of communication confusion. Sometimes it helps before the question “what do I need?” is even asked. Try it! You might find you like it.

“It’s when we start working together that the real healing takes place” 

– David Hume, Scottish Philosopher
Don’t compete for who hurts more.

This is not a contest for who hurts more. You must respect and validate each others’ journey. 

As the hearing partner, I have grief because there is a loss – a communication loss between us. I might face changes in communication and boundaries that may be hard at first – a change between the two of us. I have to accept that our relationship must change and I must be part of the solution – for the relationship between you and me.

But never once in my journey as a hearing partner did my grief match that of my loved one.  Never.

My Hearing Partner Grief Story

“The secret to resilience is focusing all your energy, not on fighting the old, but in building the new.“

– Author Unknown

For long as I can remember, my grandmother and I had weekly phone conversations – despite her hearing loss. Even the years when I was a sullen teenager rolling my eyes at the other end of the line, we had weekly phone calls. This tradition lasted into my late 30s.

I remember the day my grandmother and I could no longer have our weekly phone chat due to a drop in her hearing. It was frustrating because she was bluffing while I was relaying something important. Angrily, I yelled something I’m sure was harmful and definitely not helpful, then hung up. It was devastating to realize we would no longer talk on the phone once a week. My world changed that day because we could not carry on our decades old tradition. I would have to grudgingly find a new way to have a communication relationship with her.

Finding a work around.

Because of this drop in her hearing and the loss of phone calls, my grandmother lost communication with EVERYONE. She could no longer call and ask friends about dates for bridge or social gatherings. Making her own doctor appointments was lost to her because she often got the day and times wrong. She could no longer call any of her grandchildren. For her, it was losing everyone, not just our weekly chats. She had to find a new way to communicate with every single person she came in contact with; friend, family or acquaintance.

That truth hit me a couple of times with respect to changes in my communication relationship with my grandma. When it hit, I was glad to have the support from my local HoH community. 

Finding a Solution Together.

Together my grandma and I made communication changes, because our relationship was important to both of us. Instead of once a week phone calls, we had once a week lunches. We would visit and talk about our lives for the week. I helped her with phone calls and made sure she had times correct on her event calendars. Not long after we started this routine, captioning phones were introduced. They were too new of a technology to solve all the problems, but it gave her some autonomy to make appointments for herself, call a friend to find out a time and place for her social calendar. Maybe check in with a short call to those grandkids living in another state. The captioned phone freed up some time for our weekly luncheons to be just fun visits.

The Myth: It takes 21 days to change a habit. 

Humans are not a patient race. Change is hard. Learning something new is, “eek!” Habits are hard to break. Don’t expect to be perfect but shoot for progress. I think this thought process could be another blog all its own.

Recently, I was getting frustrated with changing another personal habit of mine, how long the change was taking. I took it to Google, starting my search to find out how long this takes, for any habit.

In the 1950’s, plastic surgeon, Maxwell Maltz, published a quote about an observation of his surgical patients: “…These, and many other commonly observed phenomena tend to show that it requires a minimum of about 21 days for an old mental image to dissolve and a new one to jell.”  This quote morphed over the years to “21 days for change.”

Wait…What?

It took me a few read throughs and three different blog articles to realize what was missing in my thought process… a minimum. I’m not going to wake up magically on day 21 and be like, “Wow. I am a whole new person.” None of the habits I formed in the past happened in 21 days.

More recent studies by Phillipa Lally, health psychology researcher, shows it can be anywhere from 18-254 days for a habit to take hold. How long it takes a new habit to form can vary widely depending on the behavior, the person, and the circumstances. 

Aha moment!

Your HoH loved one is not going to get up on day 21 of putting on hearing aids hearing exactly like they did before hearing loss. 

They are not going to get up on day 21 and be able to carry on a conversation from two different rooms, like they did before.

Hearing partners are not going to wake up on day 21 with everyone following hearing loss communication boundaries. Your HoH will spend everyday being proactive for their communication needs, over and over and over. 

Think about it like this; it took you a lifetime to have the communication habits you have so it only makes sense that creating new habits will take some time. 

This is important, it will take effort from both parties.

Let me say it again. Changes in habits take time and VERY importantly, it requires effort by both parties. I can’t do my part if you don’t do yours, and you can’t do your part if I don’t do mine.

Don’t look for a magic date on the calendar. Talk to each other honestly. Help find solutions to the problem. Celebrate the small victories. When you fail, and you will, get up, figure out why and make needed changes.

My best advice for hearing partners? Buckle up and get on board. Because it’s time for you to get in the know.

Join our Let’s Talk Tuesday workshop

We’re online and live April 4th at 6:00 PM Mountain time (adjust for your time zone). Join Julia and Chelle to discuss Our Hearing Partners. We all learn from each other! It’s online via Zoom with CART/live captions. There is no charge for the workshop. Register on our Events page for Let’s Talk!

Categories
Communication Access Communication Practices Communication with Family Connections Hard of Hearing Hearing Loss Personal advocacy Self Advocacy Setting limits

Communication & Boundaries

Fence with a green vine crawling up the furthest left post, some grass at the base. The Hearing Loss LIVE logo which is 3 green leaves. Birds flying to foreground.

Communication is a chore in general. Add hearing loss and it’s 10 times more challenging. At Hearing Loss LIVE!, we say this all the time in regards to communication: We cannot do our part, if others don’t do their part. The following 3 guidelines are for our hearing communication partners – this is their part of the communication equation:

  1. Get the hard of hearing person’s attention first, before talking.
  2. Face that person while talking the whole time. The minute you turn away, sound starts to fade a bit. We need sound coming right to us. Also, seeing is hearing. We use facial expressions, body language and minor lipreading to help interpret the spoken language. 
  3. Be within 6 feet because the closer you are the better the sound quality. Again, seeing is hearing. 
Continue reading “Communication & Boundaries”
Categories
Emotions, Psychological Stress Hard of Hearing Hearing Aids Hearing Loss Mental Health & Hearing Loss

Grief For A Little Drop in Hearing

by Chelle Wyatt

Last month I shared my most recent experience getting a hearing test, Hearing Tests: Mixed Emotions. The red & blue lines on my audiogram have mingled together in the past but this time, my red line took a step away from the blue one. My word discrimination went from 60% to 40% in that ear, with amplification. The audiologist said, “It’s only a little loss.” True, it’s only a step down but I certainly feel the grief for that little bit of hearing loss.

Among the hard of hearing (HoH) tribe we all fear hearing tests. When I told people I was going for my hearing test appointment, my HoHs checked on me before I went in and wished me luck. They asked me to touch base with them after because they know every little drop in hearing counts. We collectively hold our breath until we get results. They will congratulate me if there’s no change and they sympathize if there is a change. 

Continue reading “Grief For A Little Drop in Hearing”