Categories
Advocacy Hard of Hearing Hearing Loss Misconceptions Setting limits

Get Out of Your Own Way

Written by Michele Linder

It is tempting to frame disability in the context of limitations. Certainly, Hard of Hearing (HoH) people face a communication barrier. That means they either find workarounds in situations where communication is a challenge, or give up and accept less out of life.

Getting hung up on what we can’t do is a natural tendency when we are going through the stages of emotional trauma that hearing loss forces upon us. However, we can choose to come out the other side a better person.

Fear is the vehicle for unnecessary limitations, and can rob anyone of a life well-lived. Having a barrier makes it easy to justify I can’t.

When others tell you that you CAN’T do something because of your hearing loss, it is your decision to accept or reject that limit. You determine what limits are acceptable, and those that are not. 

One thing I really love about Rachel Kolb’s TEDxStanford Talk, Navigating deafness in a hearing world is that she makes the point above so clearly.

Early in the talk, Rachel speaks about the limits that others tried to set for her when she was a child. Luckily, she had parents who taught her to believe in herself, and that challenges are not outright limitations, which led to her becoming a young woman who knew she had choices.

Rachel talks about can’t around minute 13:26: “…when I came to Stanford, I was shell-shocked by this college social environment… it was very easy to think, “I can’t.” I can’t have a normal social life like another young person. But over time I’ve learned one very important thing: I have a choice. I might not be able to choose what is easy for me or what is difficult. But I can choose how to use the abilities that I do have… And by embracing the choices that work for me, I’ve experienced many rewarding things as a result.” I took Rachel’s way of looking at life with hearing loss and made it my own, and it was life-changing for me.

My list of how I got out of my own way:

  1. STOP FAKE HEARING!
    When the information or conversation is important to you, you can no longer pretend that you heard what was said when you didn’t. If you continue to fake it when it matters, you are limiting yourself by letting learning opportunities pass you by.

    There will always be times when you resort to fake hearing, but it is NOT a productive skill in most cases and it doesn’t teach you anything.
  2. Do NOT accept the limitations that others try to impose upon you.
    As Rachel Kolb says in the video linked above (10:33), “I think back to that first experience, and I realize that I wasn’t the one who was limited, this other person was.”
  3. Teach yourself what you don’t know.
    If you have no clue how to tell others about your hearing loss or how to ask for what you need, experiment. Try out different things and find what works for you. And, remember, what works for you might not be the same thing that works for me.
  4. Say what is true.
    People with hearing loss share about the things that cause them anxiety—getting a haircut, ordering in a restaurant, etc.—and that’s a good thing. I often tell them, “Now tell the person you encounter in the situation exactly what you told me.”

    You can alleviate all of your anxiety by simply stating what is true about your hearing loss and communication needs upfront in every situation. Some might think, “Saying all of that is just too much,” but if it gets the results you want, what is the big deal?
  5. Be proactive and check your attitude.
    Stop waiting to react!

    When I became a better self advocate and started telling people what they need to know about my hearing loss and communication needs effectively, I realized that a lot of the problems I was having were my own fault.

    Example
    : From a social media conversation about face masks in a medical setting: Commenter 1: I am totally done with the mask mandate garbage… I wear a button on my mask that says, “Please face me, I read lips” and the receptionist talks to me with a mask on. She hands me a pen and pad of paper, and when I ask her, “How is that supposed to help me hear you?,” she presses some buttons and brings up a sign language interpreter on a screen. I tell her I don’t sign… I cannot communicate anywhere! Commenter 2: That sounds just like me. I am having the very same issues. It has gotten to the point that I only go out when it is necessary. 

    That is not to say that communication difficulties are not frustrating. They are. But having an attitude isn’t productive, and masks are going to be with us for a long time. 

    Society, especially those who deal with patients, clients, and customers, could be more aware of diversity and could use some sensitivity training. However, you can’t expect people to read your mind or to know how to communicate with them, so tell them what they need to know about you and your communication needs, and direct them.

    Here is my truth: “Hi, I am a lipreader, but masks wreck my communication. I don’t use sign language, captioning is how I access communication. Do you have a live captioning option? If not, you will have to write to me for me to understand,” I also might bring up an ASR (automatic speech recognition) captioning app on my phone, but I would rather give the medical facility the opportunity to provide a live captioning option first, as ASR apps can be inaccurate.

    Limiting interaction with people is not a rational solution, so why not learn how to tell others exactly what they need to know about your hearing loss and communication needs.
  6. Realize that you have more control and options than you might think.

Having a communication barrier is a big enough obstacle. Don’t be the stumbling block in your own path. Learn to accept and embrace who you are with hearing loss and put into practice good self advocacy and communication skills. It helps to be creative and flexible where those two things are concerned, and the only way you will find what works for you is to experiment; then, practice, practice, practice. When you start to get good results, you won’t believe how empowered you feel!

Categories
Emotions, Psychological Stress Hard of Hearing Hearing Loss Shame/Stigma/Denial

The Emotional Side of Hearing Loss

Hearing loss comes with a cycle of emotions—sadness, grief, anger, depression, pain of isolation, and feeling panicked at not being able to do things in exactly the same way as you used to, or not all. One of the biggest things most people miss about hearing loss is how emotional it is. 

Big moments—a loss that is glaringly and painfully apparent—and day-to-day challenges make life with hearing loss an ongoing rollercoaster of emotions.

Some Emotional Aspects of Hearing Loss:

  • Losing the ability to communicate in conventional ways, and having family and friends fail to accommodate you in the alternative ways you have requested. 
  • Being left out is a given, and it makes you feel insignificant.
  • Self-esteem – hearing loss changes the way you interact with others and makes you feel as if you’ve lost a part of your identity. Suddenly losing the confidence you’ve spent a lifetime building has deep emotional and psychological ramifications.
  • Panic becomes a knee-jerk reaction to any situation you have no idea of how to respond or handle.
  • Stress becomes a daily battle. There likely will be a point in your day when communication breaks down or you are unaware of what is going on around you. Being on pins on needles waiting for the inevitable is so stressful.
  • Sense of failure when…
    • Hearing devices don’t work as well as you want/expect them to, or at all.
    • You can longer participate and contribute in the way you want due to lack of accommodation.
    • You feel like you are losing your independence.

The ongoing emotional and psychological trauma of hearing loss is often not adequately addressed during the process of seeing a doctor and audiologist, having a hearing test, being fitted with hearing aids, or receiving cochlear implants.

The HoH need emotional support, counsel, and/or therapy to deal with how hearing loss changes your life. They need instruction on how to take control so they are not always at the mercy of their emotions.

Chelle: Sudden onset of tinnitus was traumatic. That unwelcome high pitched squeal invaded my peace, ruining my sleep. I went to an ENT who told me, “You have tinnitus and you have to learn to live with it.” That was it, no suggestions or advice. We look to our medical providers as a source of help. If they can’t help us, who can? I did not see how I would ever be able to sleep again. Any resource would have been helpful, a pamphlet, support group… anything. Instead I waded through it on my own. 

One morning my resolve rose up and I decided I would NOT let this ruin my life. I was 18 years old and I still had plenty to do in my life! The cartoon below represents how I felt, I was not going to let tinnitus be more annoying than me. 

Getting hearing aids at 23 years old felt odd. My husband at the time used my hearing loss to his advantage. He would ask me about buying something from across the house. If I didn’t answer, it must mean it was okay to buy it. He was not nice about repeating and constantly turned off the captions because they were in the way. Because of him I learned to fake it, or bluff. If my own husband thought it was such a pain in the ass, what must other people think? It took me a few years after divorcing him to learn most people were okay with my communication needs. 

Big drops in hearing are always a hurdle. This has happened twice in my life. It means losing parts of your old life and that hurts! There’s a grieving period for that. Losing phone calls, losing hearing from other rooms, not hearing my kids in school plays. Losing music hurts. In the 80’s I could hear all musical instruments and sounds even though I misunderstood lyrics. Now when I hear an 80’s song, I know I’m not hearing the whole song. Pieces are missing, pieces my brain can fill in but there’s some grief every time that happens. Another piece lost.

I get mad sometimes. We hear anger is wrong but I beg to differ. Sometimes it’s needed to get the point across. Anger is telling us something is wrong. Don’t tell me “never mind” or you’ll see my anger. It’s unfair to be denied access to communication. I try my best to hear. I didn’t ask for this hearing loss. Besides that, were you facing me when you said it? How much background noise was there? Did you get my attention before talking? It’s usually not my fault for not hearing.

Julia: As a hearing partner you will have grief and different emotions arise. Hearing loss will affect your relationship and communication. Not if, not when, not maybe. Flat out it will. Respect the emotions of your partner and their hearing loss experience. But take care of your emotions, too. If you don’t, resentment will set in. 

I tell the story in an earlier blog when it became obvious communication with my grandmother changed and how that affected me, and how it dawned on me that it affected her in a different way. I can’t say how the experience may have gone had I not learned years earlier that this would happen and where I could turn to for support. So take a class with your partner and learn about hearing loss. Join a support group together and/or separately.

Michele: I have many stories from my own life, of heart-cracking moments that sneak up on you and take you by surprise, but for this week’s topic, I’m going to share a story from a dear friend and hearing loss peer. 

I remember reading this story when it was written, over ten years ago, thinking how perfectly it takes you inside of a moment of raw emotion… a moment when hearing loss breaks your heart all over again.

I Felt My Heart Crack: I lost my hearing, as most of you know, about close to 20 years ago. I’ve grieved, cried, come to terms, got help, learned to live inside of it and moved on. Or, so I thought.

Yesterday, my husband forwarded me an email that was sent to him. He keeps up with all of our old high school friends, and is considered a contact with them because he also runs our alumni website. So the friend who contacted him, sent the email to him asking him to give it to me. Here is what it said:

“We would be honored to have you and your husband attend a pool party at my home. Several of the old choir members will attend. We need to sing, and fellowship for one more time. I need you to sing the high notes for me, as in the past. Call me at Home. I love you, can’t wait to hear from you.”

So, as you see, I used to sing. A lot, and well. This friend, and I, and a few more people were in our school choir, and also in a small elite singing group. We were good, real good. 

So, I read this email and felt my heart crack. I can’t sing anymore. I can’t sing the high notes. Sometimes I can’t even hear them, depends on all the hearing loss variables that exist in my life. Even with the CI’s, I’ve pretty much lost music as far as being able to hear it correctly and on key. I can identify and hear instrumentals pretty clearly but add lyrics in and it’s still not easy. My singing days are over. 

I haven’t seen this friend since high school. She doesn’t know what’s happened to me. I wrote her back, and told her. I declined the invitation. My husband doesn’t get it, why don’t I want to still go? I can’t explain why my heart is broken, by just thinking about this, let alone having to deal with it in person and be unable to participate. He just doesn’t get it, he wants to go anyway, and I just can’t stop crying.

I can’t believe something from a thousand years ago has popped up in my face and is causing all these emotions. I surely thought I was over feeling this way about my hearing loss. Like the energizer bunny, the losses just keep on going……

No matter how much hard work we’ve done to reach a point of acceptance and “moving on”, there are always deeply emotional losses lurking under the surface just waiting to be triggered. And, no matter how much our hearing partners try, they will never understand unless they experience hearing loss themselves. 

The day-to-day challenges can be as overwhelming as the big ones that slap us in the face. And we aren’t the only ones affected by hearing loss, our family and friends have emotional adjustments of their own.

Until the emotional and psychological side of hearing loss becomes a part of diagnosis and treatment, millions of HoH people will continue to struggle. It takes a lot of hard work to build the skill, knowledge, and awareness needed to live fully with hearing loss. Managing our hearing loss isn’t something we should have to figure out on our own.

Watch our companion podcast on The Emotional Side of Hearing Loss..

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 Accessing Music Advocacy Connections deaf Hard of Hearing Hearing Loss Hearing Technology

Maclain Drake

Maclain Drake lives in Utah and is a favorite in the hearing loss community. He has so much energy! He’s a DJ, an actor, and makes music accessible to those who are Deaf and Hard of Hearing (HoH) with his company Vibe Music Events. His energy is infectious and he is always asking us what he can do to help further HoH awareness. Wherever he goes, he asks what is available for people with hearing loss, and educates venues on our communication needs.

Maclain inspires many of us here, so we thought we’d introduce him to all of you.