Category: Personal advocacy

Personal advocacy is centered around getting family and friends to accommodate your communication needs.

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Accessibility CART (live captioning) Hearing Loss Hearing Technology Personal advocacy

Accommodations: Behind the Scenes

Purple waves at the top and bottom. White hearing loss live logo upper left corner of 3 leaves, one with a spiral representing the cochlea. It says Accommodations Behind the Scenes

What happens behind the scenes when we request accommodations? A lot more than we generally know. We love seeing people request accommodations, such as CART/live captioning. However, there are a few more steps we can take to ensure better outcomes and that’s what we’ll discuss this month.

In December 2021, we sat down for a podcast titled “Hearing Loss LIVE! Talks Live Theater Captions with Vicki Turner” (captioned video here, or look for our audio version on our buzzsprout channel, or your preferred streaming platform). Vicki does the captions for Broadway Across America plays and more. In the podcast, she tells us how many hours she puts into each play and what needs to happen before show night. (Check out Turner Reporting & Captioning Services.) Taking a page from Vicki, there are some things we can do to make sure we have better experiences when we request an accommodation.

Vicki coming out of an elevator with a dolly with her equipment that's almost taller than her. Vicki has shoulder length blond hair and is wearing a black jacket.
Vicki Turner with her theater captioning equipment.
Better Outcomes for Accessibility

Julia: Once you’ve requested CART (communication access real-time translation), it’s my job to work with the vendor to make your dreams come true. If the vendor, or venue, is open to working with me, it truly is your dream come true. I want to share what happens behind the scenes of CART so that you have the option to assist with questions when you request it.  

The biggest thing you need to know as the consumer is that every event will take different types of prep work. I wish I could outline every event in this blog but you all would be bug eyed. Instead, I will share a couple of regular captioning assignments I have. Take a look at the process based on some of my upcoming events.

Sports

Let it be known I love attending sporting events! Watching it on TV…not so much. I was excited when asked to cover sporting events onsite at one of our local universities. I will give a nod to the University of Utah for their work on inclusion by incorporating captions at their sports events where they can.

Just to be clear, I am not a broadcast captioner, someone who captions television shows. My job at the university is to caption the stadium announcer to the Jumbotron. There is a difference.

Most of the hard work happens in the days prior to a game. Did you know there are over a 100 football players on a roster? Most of these players will not see even a minute of play time while I caption. Even though they might not play, my dictionary must be ready just in case. I transfer every player’s name to a word document as I create a memorable shorthand note for that name in my stenography program. Then, I organize each team for captioning with starting lineup possibilities.

For game days, I arrive early so we can run a caption test. By this time we have what is called the run of show and I can review who the starting line ups are. It tells me if the Star Spangled banner will be sung by a person or if it’s instrumental, and what the halftime entertainment will be. Halftime can be anything from a silly costume race around the stadium or arena, a youth mini sports tournament, retiring of a former player’s jersey or recognition of an important local figure.

How CART happens behind the scenes. Julia gives us a snapshot of how she works her accommodation. The football roster, to a document to stenography keyboard.
Julia gives us a peak into how she sets up her dictionary for live captioning.

This is my behind the scenes process for captioning sporting events. How’s your area for captioning college sports? Have you asked for captions? While it’s a process it’s not that hard, especially with cooperation from the venues. It’s amazing what a group of students or alumni can accomplish. I’m happy to give advice as needed.

College Course

How much prep is needed is going to depend on class material. We build a dictionary specific to the classes, foreign language will be a completely different dictionary than chemistry. In previous blogs and podcasts, I have talked about how I design my captioning around each student’s needs.  

Most classes I have access to the course material through Canvas (Canvas is used as an online student portal in most educational institutions). This allows me to read through the lecture slides prior to class. When possible, the Student Resource Center gives me access to the text books.

Most professors are very helpful with getting me access to course material. As a consumer, you can help me with the one professor who might be leery of an outsider wanting access to a class. Let the professor know this helps you to have a better experience, because I will have the correct terms in my dictionary. This helps you better understand what he’s teaching and helps you with class participation.

Conventions, Business Meetings and more…

I hope you can attend our Let’s Talk Tuesday next week for more of what happens behind the scenes on captioning. We added a list of companion blogs and podcasts at the bottom which relate this topic, including a request for CART. Each post/podcast will give you some insight on what to expect when you want to request live captions/CART.

Behind the Scenes for Assistive Listening

Chelle:  Over the last few months, I’ve discovered that while venues have the best of intentions, they don’t understand assistive listening. They will buy devices without taking the time to learn how they work best. I understand assistive listening enough that I can let them know, “That’s not going to work and here’s why…” Yet they don’t believe me because their technology department bought it and they should know. Unfortunately, they did not know what they bought.

Assistive Listening, Before You Buy…

So what needs to happen behind the scenes for assistive listening? I talked with Listen Technologies, who manufactures assistive listening systems. Here are some of their suggestions. Here’s what they had to say.

“We recently created a System Recommendation Tool that lives on our website for this very purpose. It goes through a series of questions to determine what system is right for the venue, it’s kinda fun to go through…here is the link.”

What to Consider When Buying a System?

What are some things that should be considered before a venue buys an assistive listening, I asked Listen Technologies? Here are their suggestions.

  • Do you need a stationary or portable system?
  • What application are you using it for:Assistive Listening & Compliance, interpretation, tours or training?
  • Where are you located? (California laws are slightly different than the standard ADA guidelines.)
  • What is the room capacity? From there the tool will ‘recommend’ the number of receivers/neck loops and give you options for what type of technology will work.
  • Other considerations:
    • Do you need a secure audio signal (IR cannot travel through walls)?  
    • It’s also important to understand the goals of the venue. If a venue wants to provide assistive listening to a broader audience, then an IR (infrared), RF (radio frequency), or Wi-Fi system is recommended. 
    • If the intent is to primarily work with hearing aids, then a hearing loop will work. Loops can be expensive to install, especially in an existing space. It requires some renovation. Loops work without hearing aids, by using receivers or other devices that have a telecoil.  (Hearing Loss LIVE! wrote a post on hearing loops for more information.)
It’s all about options. 

Here’s something else that Listen Technologies does; they hold live webinars every month or so geared towards people in the professional AV industry. The webinar covers the basics of listening systems and ADA law. Anybody is welcome to sign up. They also have a recorded version that can be accessed at leisure, it’s on the training page of our website. Just click on view webinar and sign up to receive the link.

Include the HoH Community

I’d like to add, make sure you’re working with the Hard of Hearing (HoH) community too. There is valuable input within the community. Bring us to the table so we can share our insight as well. Get true representation from the community, in fact make it several people.  You might find an HLAA chapter nearby or you can contact the state Deaf and Hard of Hearing agency. Working behind the scenes together will create happier outcomes.

Would you like to learn more?

Join us September 5th at 6:00 PM mountain time for our LIVE! workshop online via Zoom with CART. Register on our events page. (There’s no charge for this event.)

Here are some other posts on advocacy, CART and assistive listening:

Categories
Connections Hard of Hearing Personal advocacy Tribe

Hearing Loss Community Members: Humelan Hearing

Hearing Loss LIVE! talks to Humelan Hearing. It will take us working together and individually to create more hearing loss awareness.

Meet our hearing loss community members. Why? Because they provide valuable resources and inspire us. Spreading hearing loss awareness is going to take a lot of us working together and as individuals. Connections in the community provide more resources and ways to get the word out.

Today we introduce you to Humelan Hearing. We asked Gil Kaminski to tell us more about Humelan.

Gil Kaminski
Tell us about Humelan. How did you came up with the name?

Humelan Hearing is a public benefit corporation dedicated to building a range of solutions to cater to people with diverse hearing levels. We are a mother-daughter team, deeply familiar with the realities of hearing loss. My mother, Prof. Michal Luntz, is a bilateral cochlear implant user, a cochlear implant surgeon, and a hearing researcher. She entered these fields, not knowing she would one day need hearing aids and cochlear implants herself. I always felt there was a touch of destiny in that. 

We started from a long-time passion of ours – making medical knowledge accessible and easy to understand, as well as fostering communities. Both our knowledge hub and communities can be found at Humelan. Marne Sullivan’s ‘Hear & Out’ is one of my favorite communities. It’s rewarding to see our members open communities and support each other. We are also working on several technology-enabled tools to make life with hearing loss easier to navigate. If you have expertise in product development, UX, AI, or programming and are passionate about addressing hearing loss, we’d love to hear from you.

When we started Humelan, one of the first things we thought about was the name. We aimed for a name that would represent our commitment to a person-centered approach and be more easily heard by those with hearing loss. We sought the expertise of Prof. Tova Most, an educational audiologist specializing in spoken language perception and production. She guided us on which sounds to avoid, like “f”, “s”, and which to favor, as they’re generally easier to hear, such as “m” and “n”. In wanting to emphasize our commitment to placing the person at the center, we sought a name that evoked the idea of a ‘person’, or ‘human’. This thought process led us to the creation of ‘Humelan’.

What’s your personal connection to hearing loss?

My personal journey with hearing loss began when I was a child. As I was growing up, my mother was growing deaf. She always had hearing aids lying around in her room, but they weren’t really helpful. It wasn’t until I was about 12 that she began to use them more frequently. Her hearing continued to deteriorate, she moved to bigger hearing aids, started to use the FM receiver, and around twenty years ago, she received her first cochlear implant. For many years, I didn’t know what prompted her to start using the hearing aids and what enabled her to benefit from them. Recently, when we started to work on Humelan together, I met the audiologist who had the right conversations and provided the right support to my mother. I feel very grateful to her. For me, hearing aids and cochlear implants have always been a part of life. 

Gil’s mother, Michal Luntz, MD
What is Humelan Hearing’s goal?

Our purpose is to provide people with the information and tools they need to navigate life with hearing loss while also working to make our environment more accessible and inclusive. I think about everything we do in three primary pillars: providing readable and reliable information, fostering supportive communities, and collaborating to create meaningful impact. 

What kind of future do you envision for people with hearing loss and how can people help? 

Understanding that hearing loss affects us all, it’s not a matter of ‘if’ but ‘when’. So, when I envision a future, it’s a future we all need. I’ll summarize my thoughts into four key areas: First, I see a future with better communication accessibility, accommodating different hearing levels and communication preferences. Second, the financial burden of hearing loss is substantial and extends beyond just hearing technology. I would like to see more comprehensive coverage and support in this area. Third, I am passionate about promoting greater awareness of hearing loss and hearing health. This encompasses routine hearing screenings for adults, as well as broadening educational efforts on preventing hearing loss. Additionally, I believe in the importance of everyone understanding how they can assist those with hearing loss.

Action is needed.

Actions as simple as modifying our communication methods, practicing patience and kindness, and ensuring the accessibility of public spaces can make a significant difference. Last, I strongly believe in the power of person-centered care across healthcare, especially in hearing health, which impacts every aspect of a person’s life. It’s a person’s communication lifeline. Our approach at Humelan is grounded in person-centered care (PCC) – putting the person with hearing loss at the center and in the driver’s seat, respecting individual preferences and values, prioritizing shared decision-making, and inviting friends and family into the process. I hope to see a continued shift across hearing health to a person-centered approach. 

Stay in touch with Humelan.

Humelan Hearing is on Facebook, and Instagram 

Categories
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
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
Communication Access Hard of Hearing Hearing Aids Hearing Loss Hearing Technology Lipreading Personal advocacy Sensory Loss

Hearing Tests: Mixed Emotions

By Chelle Wyatt

In 30 plus years of wearing aids, I’ve never had hearing aids longer than 6 years until now. My current pair of aids are over 8 years old so this is a milestone. They might go 10 years with effort. There are minor glitches such as static on the right side until I wiggle the wire to my ear mold. They also don’t sync together, that means I have to change programs on both sides instead of one. Nothing huge but I’ve decided It’s time for new technology with more connectivity.

This involved getting a new hearing test. My last hearing test was over four years ago. I suspect there’s been some change but nothing huge. Hearing loss can be sneaky, dropping slowly therefore easily dismissed. It’s been about 15 years since I’ve had a significant drop in hearing and this too is another personal record. 

Continue reading “Hearing Tests: Mixed Emotions”