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

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.

Categories
Accessibility Advocacy CART (live captioning) Emotions, Psychological Stress Hard of Hearing Hearing Loss Shame/Stigma/Denial Vulnerability

Vulnerability

Michele: Emily Nagoski, who has a PhD in health behavior, talks about the fear of uncomfortable feelings, which is another way to say the fear of vulnerability: “One of the things I say over and over… is that feelings are tunnels. You have to go through the darkness to get to the light at the end… You’ve got to work all the way through it… [I] grew up in a family where uncomfortable feelings were not allowed, and… [I was] pretty sure that uncomfortable feelings [were more like] caves with bats and rats and snakes and a river of poison.

Like Emily, I grew up in a family where vulnerability was demonstrated as a bad thing—something to avoid at all costs—and asking for help meant that you were weak. It took me far too long to realize that the complete opposite is true.

By avoiding uncomfortable feelings and situations, aka vulnerability, you rob yourself of the opportunity to move through it. But when you allow yourself to be vulnerable, you can move through any uncomfortable or difficult situation to figure out how to manage and take control of it. By sitting within your own discomfort over and over, you will reach a point where you no longer dread what makes you uncomfortable. Confronting uncomfortable feelings teaches you to manage the emotional and psychological aspects of hearing loss.

Another good quote: “When you shut down vulnerability, you shut down opportunity.” ~Gay Gaddis

Avoiding vulnerability is part of what causes people with hearing loss to isolate themselves. Shame thrives in isolation. When you haven’t truly accepted your hearing loss, defined your communication needs, or acquired the skill to handle situations where you feel vulnerable, hearing loss will continue to paralyze you.

The minute I embraced being vulnerable, my life changed. 

Since there seemed to be no one to teach me how to live in the world with hearing loss, I decided it was up to me to teach myself. I had no idea how to even tell people I couldn’t hear or what to call myself. Was I deaf, hard of hearing, hearing impaired? 

That is where I started. I psyched myself up and went to an out-of-the-way mall, going into every single store to practice how to tell people I couldn’t hear. I discovered labels don’t work—they don’t provide any useful information—and I had no idea of my own needs, which is required in order to tell others what I needed from them. 

My truth is that I am a lipreader and I need to see people speak in order to hear them. However, lipreading wasn’t always going to work, so I also needed to know what to do when it didn’t work.

Intentionally exposing myself to what I feared, and facing those fears in the context of experimentation, to find an effective way to inform about my hearing loss, I became desensitized to my own discomfort. Equally important was learning to define my own needs and truth.

Hard of Hearing (HoH) people need to find skill, knowledge, and confidence to combat the natural inclination to isolate themselves. Vulnerability is where those things will be found and is what will allow them to adapt to life with hearing loss. 

Chelle: Big changes in our hearing leads to life changes, turning life upside down. There’s a lot of pain that goes with the changes. I lost friends who wouldn’t/couldn’t switch from the phone to the email/text. I couldn’t cope in the salon anymore with all the excess noise and lost the one job I thought I’d be doing until I was 80 years old. Any kind of large gathering was torture. So I stayed home a lot because it was easier than:

  • Making another friend who might also decide I was too much trouble as a HoH.
  • Losing another job I might try to find.
  • Attending events, not understanding the speakers. Being the lone person sitting in a sea of people who were laughing when I didn’t understand any of it.

It was easier to stay home and watch DVDs. It was easier to read a book or be on the computer where I didn’t have to hear. However, it wasn’t where I really wanted to be. 

I isolated myself but reached out to my tribe. I joined the SayWhatClub again, because it was email and I now had several new friends who adored email too. I attended HLAA meetings in person, they had CART (Communication Access Realtime Translation) at every meeting and there I could participate. I felt less alone with them. As I shied away from the hearing world, my HoH world grew and eventually my courage in the hearing world expanded too. 

Thank goodness for my tribe. They helped me be who I was meant to be (in more ways than one). Vulnerability was me asking for CART the first time for a workshop, outside the HoH community, that I wanted to attend. Because I had support, I was able to push past the initial “no” for CART and persisted until I got it. That small win gave me courage to continue to make my communication needs known. I grew in confidence little by little.

Several years ago, Michele and I worked together on the social media team while volunteering for the SWC. We ran across Brene Brown’s TED Talk, The Power of Vulnerability. Her talk started with shame which many of us with hearing loss experience. We feel between worlds, not hearing, not Deaf. We are neither here nor there, lost somewhere in the middle. We have no place to connect. Brene talked about vulnerability and Michele and I understood this is what makes us strong. Taking chances brought us back and connected us to life again.

Years later, I read Brene Brown’s book, The Gift of Imperfection. I have notes all over the place in that book in regards to hearing loss! I highly recommend reading this book if you need to break through the shame and vulnerability barriers.

Julia: Protection. That is what comes to mind when I hear the word vulnerability. It means we must at all cost protect those we care for most. But do we take it too far? Only you and your hearing loss partner can decide how to protect each other without causing further vulnerability. But let me ask you, hearing partner, are you answering questions that they could answer for themselves before hearing loss? Are you taking control of situations they may have handled themselves in the past? Are you allowing them to stay home alone while you continue the same lifestyle you shared before the hearing loss?

Have you asked them if this is what they want? 

As a CART provider I see a different side of vulnerability. And guess what? Business owners, you are causing unnecessary vulnerability. If an employee, student, or consumer approaches you about needing live captioning, don’t automatically say “no.” This is someone who has stepped out of their comfort zone and is in a vulnerable spot. Before you decide “no”, reach out and talk with a CART/Captioning company and find out what you can about how to offer the accommodation. And yes CART is an equal access accommodation under ADA.

Stepping out of your comfort zone is scary. Saying yes when everything in your being is telling you to say no takes courage. You might even stumble a time or two, but that’s okay, because you learn some valuable things from every misstep along the way.

If you need help and encouragement to deal with the uncomfortable feeling of being vulnerable, contact us at Hearing Loss LIVE!. We’ve been there and love helping others in the ways we needed help in our own journey.

You don’t have to let hearing loss paralyze and isolate you.

View our companion podcast here.

Categories
Accessibility Advocacy Captioning CART (live captioning) deaf Hard of Hearing Hearing Loss Speech to Text Captions Stenographers

Global Alliance of Speech-to-Text Captioning

Hearing Loss LIVE! welcomes Jennifer Schuck, current Board of Directors Chair and Founding Member of Global Alliance, a nonprofit corporation whose purpose is to be the leading professional authority on speech-to-text captioning, representing all captioners, consumers, and industry.

GLOBAL ALLIANCE: It has been two years since the Global Alliance of Speech-to-Text Captioning was founded for the purpose of bringing together the captioning community to empower consumers who rely on captioning. There is no other organization that brings professionals, consumers, advocates, and the industry together to effect change. It is easy to think “I’ll wait to see what this group does before I join.” Often this means everyone is waiting and no one is joining and not a lot of work gets done. An organization is only as effective as its members. So with few members, the change is limited. There is much about the captioning industry that needs to be changed, but we need everyone’s voice to do it! Don’t wait for someone else to make the change you want to happen. Be part of the solution. 

COVID-19 has changed our world in many ways, including bringing to light the magnitude of how inaccessible our world is to communities with disabilities. Quality captioning is equal access. Collectively we can educate every day to show how universal design principles make the world inclusive for communities that have been an afterthought or excluded entirely. Providing “captioning” cannot just be putting words on a screen so you can check an item on a to-do list. Those words must be accurate and actually provide accessibility. 

The Global Alliance has created the NCSP, or the NER-Certified Speech-to-Text Provider, certification. With this certification, we’re setting the quality standard for realtime captioning. This certification is available for all captioning methods, including automatic speech recognition. A quality standard for all methods of captioning is critical. With the advancement of technology, each captioning method has a place for equal access, but all of those lanes need to meet a quality standard, which they currently do not. Without that, captions can cause confusion, misinformation, and frustration for the consumer. 

“Be the change you wish to see in the world” – Mahatma Gandhi 

Visit speechtotextcaptioning.org to learn more, view our events calendar, or join as a member. 

Chelle: While I appreciate assistive listening devices (ALDs) and systems, there are many of us with severe and profound hearing loss who cannot completely benefit from ALDs alone. Like attending plays at Salt Lake Acting Company, I hear more with captions. With ALDs, I pick up sound but it’s not enough to compensate for my hearing loss. CART/captions fill in the gaps for me.

During the pandemic, CART was in high demand and finally got its due by being used a lot for online meetings and classes. It was hard to get CART on short notice. I was happy for the CART profession but it was darn hard to get true CART! Court reporters were used to fill in with “CART” but it was different from what we were used to. At first, court reporters used a different platform that could be difficult to get into, which often held up meetings. Captions were also broken down into seconds and hardly ever a full sentence. I found myself zoning out after half an hour. We offered advice as a community and in the end things improved. Training specifically for CART is needed. We like to read fluid notes with complete sentences and punctuation. I’m glad to see Global Alliance is offering certification for CART services.

Jen’s message above is important. We ALL need to participate to make changes. There’s power in numbers. The stage is set, it’s up to us. 

Michele: As a Consumer Captioning Advocate for over eleven years, I have made a few discoveries:

  • You can never have too many places to network with others who are working toward quality captioning and its universal availability.
  • Surrounding yourself with people who know more than you, or who know the answers to the questions you will likely be asked while advocating, is invaluable.

Consumers, providers, technical and legal experts, and industry leaders are all in the movement for quality captioning together. The world doesn’t yet understand how much quality matters in captioning, or how important captioning is to the Hard of Hearing (HoH) community. CART, which uses live stenographers, is the gold standard of speech-to-text captioning, and it is what more than 95% of people with hearing loss need for full and equal communication access in their spoken language.

The ADA (Americans With Disabilities Act) recognizes CART as a reasonable communication access accommodation for the Hard of Hearing. CART provides communication access in exactly the same way as ASL Interpretation does for the culturally Deaf. 

I consider organizations like Global Alliance to be clearing houses for anyone with a stake in speech-to-text captioning. We learn a lot from one another, and when you have a mixed group collaborating to reach the same objective, each person arrives at a better understanding of the other’s role in the movement. And, a collective voice often makes a bigger impact.

Julia: As a CART provider I am excited to have an organization come into existence that is all about helping the US move forward with a better license option for captioning/CART. Though my test anxiety is to the extreme, I will be signing up and looking forward to this certification. 

If you are a CART provider, captioner, voice writer, TypeWell writer, or ASR (Automatic Speech Recognition) app inventor go to Global Alliance and help us to come together and support consumers in whatever their needs are.

Consumers, please consider advocating for captioning. There are too many HoH people waiting for others to exact change. It will take all of us asking for what we need to make lasting change. Global Alliance has a wonderful Guidelines for Captioning Services document on their website to help get you started on asking for what you need. The document will help you better understand the various forms and methods of captioning.

Consider becoming a member of the Global Alliance of Speech-to-Text Captioning, and if you need more help, contact Hearing Loss LIVE! and we would be happy to assist you further.

View our companion podcast with Jen Schuck of Global Alliance.

Categories
Accessibility Advocacy Captioning Connections deaf Hard of Hearing Hearing Loss Live Theatre Open-Captioned Live Theatre

Salt Lake Acting Company

This week Hearing Loss LIVE! welcomes Natalie Keezer, Accessibility Coordinator for the Salt Lake Acting Company (SLAC), as our guest. 

Natalie Keezer has a Master of Arts Degree in Theatre from Idaho State University and is a graduate of The Upright Citizens Brigade Theatre Training Program in Los Angeles. She relocated to Salt Lake City in 2014 and is inspired by the amazing theatre community in Utah. Natalie loves working at Salt Lake Acting Company and is incredibly grateful to be involved in the important work that is being done there.

If anyone is interested in attending an open-captioned performance at SLAC, you can email Natalie at natalie@saltlakeactingcompany.org and mention Hearing Loss LIVE! for tickets.

Categories
Accessibility Advocacy ASR (Automatic Speech Recognition) Captioning CART (live captioning) Employment Hard of Hearing Hearing Loss

Requesting CART

Michele: Requesting CART is something that the Hard of Hearing (HoH) do NOT do routinely. Partly due to a large percentage of HoH having no idea that CART exists as a reasonable accommodation, as outlined by the Americans with Disabilities Act (ADA). Most of us learned about CART by chance research, through our hearing loss peers, or from attending a live event where it was provided. Wouldn’t it be wonderful if we got this valuable communication access information at the time we are diagnosed with hearing loss?

My first visit to my state’s Deaf and Hard of Hearing Services agency in 2006 didn’t include any information about CART. Some state agencies fail to focus on CART to the same degree as ASL Interpretation for communication access. That helps perpetuate the myth that all people with hearing loss know sign language. In reality, over 95% of people with disabling hearing loss need captioning in their spoken language, and that is CART for live events.