Category: Public Advocacy

Asking for accommodations in public; CART (live captioning), assistive listening and more.

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Accessibility CART (live captioning) Communication Access Hard of Hearing Hearing Loss Public Advocacy Speech to Text Captions

Quality Captions

With the Global Alliance of Speech to Text Quality Caption Task Force

Our guests today are:

  • Sebrina Crosby, CRC. Sebrina is a Realtime CART Captioner and owner of Access Captioning, LLC
  • Kimberly Shea, NCSP, CRC. Kimberley is a realtime broadcast/CART captioner and she is the President of Breaking Barriers Captioning Services, LLC.

Serbina and Kimberly volunteer with Global Alliance Speech to Text with the Quality Caption Task Force

Captions are our access to television. Without captions, we have to make up our own stories with what we see. We did a podcast with Liza Sylvestre early this year, an artist who uses her hearing loss in her art. Her project “Captioned” is a good example of what we do without captions. Captions are our language. Quality captions matter. Don’t make us guess, especially when the information is important.  

Kimberly and Serbrina are especially busy lately with captioning so we are appreciative of the time they spent with us. In our current podcast, they talk to us about quality captions and their upcoming project which will improve captions…and they need our help.

Captions Matter

Chelle: This is how bad  my hearing is – I’ll be watching a movie and reading the captions as usual. My husband will come in and ask me why I’m watching a movie in a foreign language. I had no idea they were speaking a foreign language. To me, all dialog on the TV comes across garbled. I cannot watch TV without captions.

Captions are our access to communication.

My husband likes to watch the news. I read the captions. When the news goes live on certain channels, there’s no captions which completely leaves me out. I get up and leave the room, it’s not inclusive. Sometimes, the captions are so far behind during certain live shows, I can’t  get the full transcript before commercials come up and I lose the last little bit. This is when I use my wifi based assistive listening system from my good friends at Listen Tech. When the show is live, they generally face the camera so I can use lipreading too. The captions become backup.

Captions Sometimes Lag Far Behind

During our October Talk About It Tuesday monthly chat, someone else brought up television captions and the lag. This can be a technology issue, Julia explained. Sometimes it’s captioning going through different kinds of technology before it’s presented on the TV. It can be the cable box. There’s no real criteria for consistency between TV stations and our televisions. For no captions, someone at the TV station probably forgot to flip a switch. 

Saturday Night Live captions lag far behind. It’s frustrating.

We can make a difference. 

Serbrina tells us during the podcast, we can make a difference in our own cities by staying on top of our local TV stations. There are pockets of stations in the USA who do a good job with captions, even though they aren’t in the top 25. (The top 25 have to have live captioners.) It’s because the Hard of Hearing and Deaf community members are actively contacting the stations about caption issues. 

Last weekend, I had a friend approach me about a recent Utah governor’s address on TV not being captioned. She and her husband have started to use captions more often.  She said they had an American Sign Language (ASL) interpreter but there were no captions. Why, she wanted to know. The Deaf community have been more firm with their communication needs than we have. We can learn from them.

Follow Up

We need to follow up with the TV stations who are not providing captions. Each station has a caption assistance page (it’s the law to have captions). I keep my most watched local TV station’s “caption assistance” pages on my phone. We can call them, email them or fill out their contact page. I’ve let stations know what the problem is and I’ve also complimented another station on providing great captions. When it’s a glaring problem, I get on my local HLAA email list and tell others to tune in and write to the TV station too. I told her next time she sees something like that, let me know and I’ll spread the word. Sebrina is right, the more of us who do this, the better captioning we get. 

Hearing Parnters Can Help

Julia: Quality captions help everyone. If you’re a hearing partner, odds are the captions are on all the time. I know at our house they are. My guess is that you are using the captions more than you realize. I do. When they are poor quality, whether the program is live or pre-recorded, it’s distracting and it drives me nuts!

But, as a hearing partner you just have to put up with it, right? Wrong.

I encourage everyone (HoHs, hearing partners, ANYONE who uses TV captioning) at home, in a bar or restaurant, at work…ANYONE who may want to use or needs to use captions at a future date, (come on now hearing loss can happen to anyone) to get involved. When local stations hear from their local viewers they take note. 

During a local news broadcast you might even see an advertisement about a local store who is credited for sponsoring the closed captions. Drop by that local store and let them know captions matter and let them know if it’s quality captions that they are sponsoring. 

Change happens when we speak up together. 

Call to Action!

Kimberly Shea: “The first place we need to start is making a record. We will gather video data and samples from all over the country. The Task Force will evaluate each video against a metric system that is designed for captioning. This will address the quality, and the usability of captions for consumers. This has never been done before.”

Global Alliance will have a call to action soon and you will see Hearing Loss LIVE! sharing it. 

The more of us with hearing loss helping, the better captioning will get. 

Join Global Alliance Speech to Text. Together we make a difference.

Did you like this blog? Check out the podcast we did with Jen Schuck of Global Alliance earlier this past spring.   

Join our twice a month newsletter by registering on our events page. (Scroll down a bit.)

Help us spread the word! Please share with us on social media. We are on LinkedIn, Twitter, Instagram, Facebook, and Reddit. Share our blogs, podcasts with friends and family so they too understand hearing loss better. (Our podcasts are available on  many podcast platforms. Search Hearing Loss Live.)

We have been bootstrapping it, starting Hearing Loss LIVE! from scratch. We keep many of our services free to those in need. Our paid services are building and we will be offering more classes soon. Until we are completely on our feet, you can support us at Buy Me a Coffee and by joining Patreon. 

Categories
Assistive Listening Device CART (live captioning) Cochlear Implants Communication Access Connections Hard of Hearing Hearing Loops & Telecoils Hearing Loss Personal advocacy Public Advocacy Self Advocacy Vocational Rehabilitation Services

Hearing Loss LIVE! Attends the SayWhatClub Convention

Let me give you a taste of a hearing loss convention. Julia and I went to the SayWhatClub (SWC) convention August 10th-13th in Nashville, Tennessee. We believe everyone should go to at least one hearing loss convention. You get to experience Hard of Hearing culture. What does that mean? 

Hard of Hearing Accommodations

You have the accommodation you need to understand everything that is said. They put in temporary hearing loops for those with telecoils in their hearing aids. (*Ask your audiologist to turn on the telecoil program before you go. Make sure it’s a dedicated telecoil program. About 70% of hearing aids have a telecoil.)  If you don’t have telecoils, it’s okay because there’s also a human providing live captioning as we go. (Called CART, Communication Access Real-time Translation.) Our human providing captions was Julia, who also sponsored some time through her CART business.

I helped to lay the hearing loop.

At conventions, you make connections with people. People who are more experienced and can answer all kinds of questions. If they don’t know, they know someone who can. Because most of the attendees are Hard of Hearing, we know how to talk to each other and people are patient with repeats. Knowing what it feels like being left out, they are usually careful to make sure everyone is included. 

Day 1

Conventions start with a welcome party. This is where you find old friends and make new friends. The SayWhatClub has a theme at their welcome party, this year they told everyone to wear a music t-shirt.  Somehow I missed the memo. Thankfully another attendee brought extra t-shirts and let me borrow one for the evening. 

I had a lot of fun with that shirt!

When the welcome party ends, we spread out to either the hotel bar or take on the city. Come on, we’re in Nashville so let’s explore! We found Printers Alley and a bar with a live band. It was loud but the group I was with knew some form of sign language and we lipread too so we got by. We all help each other with signs as needed. 

Day 2

We started the workshops. At the SWC con, give the first workshop to sponsors. Each sponsor had about 10 minutes to speak. Vendors help fund the conventions we love. They bring us knowledge and technology. Some are Hard of Hearing themselves. Here’s the sponsors this year:

  • T-Mobile Accessibility & Wireless who sponsored the welcome party. InnoCaption who sponsored the hearing loop.
  • InnoCaption has sponsored many SWC cons, they are a regular.
  • We have also had Mitchell Levy of Hamilton CapTel sponsoring and attending SWC cons for many years.
  • Advanced Bionics came and talked to use about their cochlear implants and the Roger Technology.
  • CaptionCall is another sponsor.
  • Yours truly was sponsor as well, Hearing Loss LIVE! and we talked about our Lipreading Concepts classes coming up. Vanderbilt University Brain Development Lab – They are studying how D/HoH children learn. Here is their project.
  • We also had Listen Technologies as a silver sponsor and Cochlear though neither could  show. Thank you vendors for helping make this convention possible!

Hearing Loss and Mental Health

The next workshop was Robin Nobling with NAMI of Davidson County. Her talk was  titled: Got Stuff? “Not a single person gets through life without a period of anxiety, depression, fear, grief, anger.” Those of us with hearing go through all those emotions well. She encouraged us to unpack our ‘stuff’ and move toward acceptance. What I got from it was that we should talk about it and connect with peers. 

Our last workshop of the day was with Cynthia Moynihan, a hearing loss advocate for 30 years who gave us Hearing Loss Empower Hour.  She shared some of her challenges from over the years with us. “Why me,” she used to ask. “Because I have the opportunity to learn and give back.” She finds a word to focus on each year, this year’s word is “opportunity”.  She’s found plenty of opportunity. She warned us against fitting into a mold, accept and embrace our uniqueness. 

The SayWhatClub also has daily, accommodated activities. That night we all met at the Wildhorse Saloon to learn line dancing with captions and sign language! Captions thanks to Julia and the ASL interpreter was provided by Bridges for the Deaf and Hard of Hearing.

Are you tired yet? I was but it’s worth it.  I love hanging out with my tribe. 

Day 3 Friday, August 12th

Friday’s first workshop was with Nancy Denning-Martin & Mike Helms of Bridges for the Deaf and Hard of Hearing. It was titled Advocating for Big Change. For those of us passionate about advocacy, this was informative! Nancy and Mike talked about creating change on the “micro level” which is family, friends and people you meet day to day. There is also the “meso” level of advocating which is things like churches, schools and other groups. Last, there is the “macro” level which affects change on a larger scale; politics, legislation, policy. Samples were given of each category.

The second workshop was:Jourdan Holder AuD, the director of the Cochlear Implant Program at Vanderbilt University. She gave us: Hearing Devices, An Update on Technology, Candidacy and Outcomes. She gave us a lot of information about cochlear implants. They are working on shortening the electrodes to have a better chance at leaving the remaining hearing. This is going through the FDA process of approval. 

Our last workshop was with Peter Hodes, Introduction to Tai Chi: Movement for Health, Balance and Relaxation. He led us through a series of tai chi movements, showing us how to breathe through them. He encouraged people to do what they could and no more. Pain isn’t the answer here. Use a chair or a table as needed. He made us laugh a lot. For many of us, wit was the first time trying tai chi. 

The afternoon activities were a tour of the Grand Ol’ Opry backstage, Madame Tussauds Wax Museum and then attending the night’s show at the Grand Ol’ Opry. 

Day 4, Saturday August 13th

Our last day is dedicated to afternoon activities in the downtown area of Nashville. They went to the Country Music Hall of Fame to attend the Songwriters Sessions Bonus and tour the Museum there. 

It’s banquet night! The banquet was sponsored this year by Safe N Clear. Safe N Clear gave away a box of masks with a window, one box to each table. They also provided each guest with a mask to use. 

Keynote Speaker

Our keynote speaker was Meaghan Thomas, a broadcast meteorologist in Nashville who created  The Heart of Hearing Foundation.

Her dad had a hearing loss while she was growing up so hearing loss was no big thing.  Her own hearing loss was undetected for many years because they thought, “she just wants to be like dad.” In a high school physics class, they were working with different frequencies and that’s when her hearing loss came to light. Still she considered it normal and blew it off. It wasn’t until college that hearing loss became hard to blow off. She didn’t know about accommodations so she “scooted by”. In grad school she was more upfront about her hearing loss and they let her record classes. 

As a meteorologist/tv host, she had to get an ear piece. She was fitted for that at a hearing aid place. That was her first real hearing test. Up to that point, her coworkers thought she was unfriendly because she didn’t always answer them. One confronted her about it and that’s when Meaghan let her know she was deaf on one side and had a hearing loss on the other side. That helped clear the air and that coworker became one of her champions. 

Hearing Aids

Along the way she was able to get her parents to buy a hearing aid. That was all they could afford. She was amazed at how much she could hear and what things made noise. However, it was too unbalanced having only one so it got put away. 

Three years later she was told about the state vocational rehabilitation program by a new audiologist. The VR program was willing to pay half of the hearing aids and she wanted them so much she was willing to go in debt to pay the other half. When she went in, they gifted the other half to her because they knew she would go on to do good things. She said she sat there and cried.

Last year she came out about her hearing loss publicly posting a picture of her holding her hearing aids out. The next day she woke up to a thousand comments, receiving encouragement. Many parents of kids wrote in to say it helped their kids know they do whatever they wanted. She appeared on Good Morning America with this story. Shortly thereafter she wrote a children’s book based on the comments. Once she made her money back from the book, 100% of the funds goes to the foundation she created.

The Heart of Hearing 

The Heart of Hearing Foundation was created to help others in need of hearing aids. Right now it helps people within in the Nashville area but she’d like to go nationwide and help many others.  Her main goal is to help the working age people, 20-45, to get hearing aids. These people need hearing aids to keep working. 

“When you finally become okay with who you are, you don’t realize how many people you are going to bless.” A lot of heads here nodding at the convention. Hiding hearing loss is a lot of work. When we become more about about it, and what we need to communicate, the easier it gets. We touch many lives and we can make a positive impact. 

Grow your connections. Attend a hearing loss convention.  

Julia and are looking forward to attending the Association of Late-Deafened Adults (ALDA) October 19th-23rd in San Diego, CA. This too is a fun convention with lots of great people and information. ALDA is famous within the Hard of Hearing community for their Karaoke Night. Let’s sing our hearts out because we can’t hear anyway! Just have fun. 

Join our September 6th Talk About It Tuesday at 6:00 PM MST to learn more about either convention.  

Crowdfunding

We are bootstrapping it and started Hearing Loss LIVE! with our own funds. We keep as much of our services as we can free. There’s two ways you can help us. You can share our podcasts, blogs and events. Or you can Buy Us A Cup of Coffee. 

Categories
Accessibility Advocacy ASR (Automatic Speech Recognition) Captioning CART (live captioning) Cochlear Implants Communication Practices Connections Emotions, Psychological Stress Hearing Aids Hearing Loss Live Theatre Public Advocacy Speechreading/Lipreading Uncategorized

Hearing Loss and Hearing Partners

Written by Julia Stepp

Who is responsible for communication when hearing loss is part of your family dynamics? The person with the hearing loss, right?

Let me ask you; as the hearing partner are you saying any of the following:

  • You are purposely ignoring me.
  • Turn that damn TV down!
  • Why are you yelling at me?
  • What do you mean the phone isn’t working right? I hear fine.
  • Are you serious? Do you really think I said that?
  • What do you mean you don’t want to go out with our friends on Friday nights?
  • I think you need to see the doctor, something is not right with you mentally.
  • Is it just hearing loss? Oh no biggie then. We’ll just get some hearing aids. Just stick’em on and good to go.
  • We just spent $8000 on hearing aids, what do you mean you still can’t hear me?

One that has stuck with me over the years during Hard of Hearing workshops: Your hearing loss is now our life.

Hearing loss affects every family member, especially when it comes to communication. Communication is the key to staying connected. There are many tools that can help you stay connected. Most families don’t find these tools until the connection is a struggle and everyone is beyond frustrated.. My hope is that this finds folks before the connection is damaged.

Some simple things that every hearing partner/family member can do:

  • Get involved from the beginning. There will be a period of time my friend Sue refers to as the “I’m not there yet” statement. When they’re not there yet, you can still work staying connected.
  • Stop talking from another room. This is good practice for everywhere, including your job, if you’ve gone back to the office.
  • Stop talking with food in your mouth. Ew. Just. Ew.
  • Make sure you’re facing them. This helps them use body language to fit with what is being said. It also helps you to see their facial expressions to make sure they understand what you are saying. 

The more important the conversation the better the outcome will be if you can follow these simple rules.

The list above is good practice to use with everyone, not just those with hearing loss. You can practice it over and over everywhere you go because one in five people you meet will have a hearing loss. Plus, practicing everywhere you go makes it a habit.

There is evidence that shows getting hearing aids from the onset of a hearing loss have better outcomes. BUT making someone get hearing aids so they can hear YOU will not work as well as you’d like unless you change some communication habits. You will be disappointed. When you are both ready for hearing aids, be involved. Keep the connection:

  • Go to the Audiologist with your partner. Learn what hearing aids can and cannot do. Help keep a diary of sounds and what your partner would like to hear. 
  • Find out why T-coils are important. Find out where loops have been installed to use with T-coils. 
  • Learn how assistive listening devices work. We all love our bluetooth, right? There are ways to use your Bluetooth with personal devices. There’s also FM systems and WiFi assistive listening options. Look for the Assistive Listening Device (ALD) symbol in venues.
  • Learn more about caption options. Apps on phones and computers, television, landlines phones, and public venues, office meetings.
  • Loops, ALDs and captions can all be used even before the person is ready for hearing aids. 
  • If certain environments are no longer doable, keep a list and brainstorm ideas on how to make it work. If Friday night is date night with friends and your local hangout is too loud, start looking for a new hang out. And if that Friday night date night is a quiet home dinner for two. That’s okay too.

And something I cannot stress enough. JOIN A SUPPORT GROUP. Support groups for hearing loss allow the person with hearing loss to connect to others with shared experience. Support groups are where hearing partners can learn how to better support hearing loss too. Don’t let the hearing loss be your life. Live life better with hearing loss. 

Another important list that has helped my family is to know signs of hearing loss. 

  • Repeating questions you have answered (them making sure they heard right)
  • “What?” A lot of whats or huhs or say that again.
  • TV is becoming louder and louder.
  • Trouble hearing on a phone.
  • Not answering questions you ask, or answering incorrectly.

I watched my grandma’s friends and family misdiagnose her as being “senile” or showing signs of “dementia.” It was during a class provided at an HLAA chapter meeting on how to recognize symptoms of dementia that helped me realize that grandma did not have dementia. She needed her hearing evaluated and more life skills to help her participate in all her extra-curricular activities

Because I decided I should go to the Audiologist with grandma, we discovered she had been using lipreading to pass her hearing tests.

Even though I knew better, five years later I misdiagnosed dementia vs hearing loss in my own spouse. (BTW, he’s not there yet. My husband may never “be there.”) He has a mild hearing loss and still lives a full life at 73. We have practiced communication skills well over 20 years. This is  thanks to the fact that I work with and have many friends with hearing loss. No one is perfect and we all slip up. Daily. However, we own it when we don’t follow the rules and move on. Usually.

Octoberfest at Snowbird this past fall.

Keep connected. Don’t let communication with hearing loss manage your life. Manage the hearing loss instead. Learn, grow and most of all LIVE your life.

PS: JOIN A SUPPORT GROUP! Find out why with us.

If you liked this post, try Hearing Small Voices because kids are hard to hearing. Also we wrote early on about Hearing Loss: Family and Communication.

(No companion podcast.)