Categories
Accessibility Advocacy Connections Hard of Hearing Hearing Loss Sensory Loss

Meaningful Connections with People

Connections spread awareness. We touch each other’s lives, then go on to share what we’ve learned. The Hard of Hearing tribe is a giant web of people connected together. 

Chelle: There are so many great connections to make within the Hard of Hearing community. I’m so glad I had the urge to search out others like me, my tribe, because it gave me my place in life.  In the mid/late 90’s I found the SayWhatClub (SWC). I had an email full of people who got it and introduced me to accommodations, life skills and technology. I went on to meet them at Camp Colorado in 1998. About 30 of us met at Rocky Mountain National Park and hung out together for about 4 days. No one felt left out, we connected over hikes, campfires and tours. I’m still connected to several people from there.

Chelle (5th from the left): 1998 SayWhatClub gathering at Rocky Mountain National Park.

Hearing loss conventions are great for making connections. It’s all about the people for me, though I enjoy the workshops too. My first convention was the SWC con in Salt Lake in 2012. Their cons are small and intimate so I got to know just about everyone. I made several, lifelong, friends here. Then I went on to the Hearing Loss Association of America (HLAA) convention. They are bigger with more choices in workshops, I love their exhibit hall. I met several wonderful people there. We may not talk often but when we need something, we’re there for each other. Another great group of people, the Association of Late Deafened Adults (ALDA). Karaoke with HoH/deaf friends will rock your world at ALDA cons. If I could, I’d attend all 3 every year. Guess what? They are all 3 coming up!

  • HLAA con June 23 – 25, 2022 in Tampa, FL
  • SWC con August 10 – 13, 2022 in Nashville, TN
  • ALDA con October 19 – 23, 2022 in San Diego, CA
Chelle (far right) and a few of her Utah people.

Supporting the hearing loss community in as many forms as possible is another passion. I’ve attended many other HLAA chapter meetings, not just my own in Salt Lake City. It’s wonderful that most are online these days so we can join from anywhere. I joined the Audible Talkers Toastmasters club out of Arizona, also online and accessible to those with hearing loss. I’ve been there for two years and it has proved to be a valuable experience. I met more super people here.

Challenge yourself to know others with hearing loss, be it a local support group, online meetings, workshops, classes… whatever! They are some of the best people you’ll meet and there’s nothing like finding your tribe.

2015 SayWhatClub Convention in San Antonio, Texas. L to R: Robyn Carter, Me, and Vicki Turner, of Turner Reporting & Captioning Services.

Robyn lives in New Zealand and visited me when I lived in Germany. Vicki, who provided open captions for a live theatre event at the con, had connected with Robyn while she was in New Zealand. Small world!

Michele: Choosing connection over isolation is the way to go!

My grandma, who was deaf and taught me how to finger spell.

Family: My first meaningful person-to-person connection linked to hearing loss was with my grandmother. She lost her hearing in much the same way I did, and from the same young age. She was a lipreader who taught me how to finger spell (the extent of sign language she knew) as a child. When all else failed I would write to her. I am lucky that even before my own hearing loss diagnosis (grade school), I had a positive example of someone very capable in life in spite of their hearing loss. Eighteen years was not nearly enough time with her, and I miss her every day.

2014 SayWhatClub (SWC) Convention in Madison, Wisconsin: Leslie Cotter (Left) is a fellow Minnesotan who I met in 2008 when I joined SWC. We were fellow volunteers and met for the first time in person in 2009 when she invited me down to the cities to meet Cathy Hilden who was in town.

Chelle Wyatt (Middle) rejoined SWC in 2009 and we became online friend and fellow volunteers. We didn’t meet in person until 2014. We’ve visit each other regularly over the years since.

Steve Nye (Right) joined SWC in 2013 and we met in person at 2014 convention and a few cons since.

Peers: When I began connecting with people in the Hard of Hearing community online—unfortunately, not until my 40s—I was amazed. Having a common focus shrank the world down to a small international group of people that I crossed paths with in many different places.

I met Julia Stepp in person for the first time at a Salt Lake City HLAA Chapter meeting where she provided CART. Julia has been the CART provider for several of our SayWhatClub Conventions and will be in Nashville this year!

That led to finding a peer support group (SayWhatClub-SWC was my first) where connections happen naturally. Many connections turn into lifelong friendships, and that is how I met Chelle. Information, experiences, and invitations shared by peers led to other connections. I met Julia while visiting Chelle, and I also connected with some other great Utah people. When their Division of Services of the Deaf and Hard of Hearing (DSDHH) opened up their online classes during the Covid lockdown, I made new connections during Speech Reading and Living with Hearing Loss classes.

Volunteering: After joining the SWC in 2008, I was asked to volunteer almost immediately. While writing for the newsletter and blog, and searching for content for the SWC public Facebook page, I connected with people and information that I probably would not have found otherwise.

Boise, Idaho: 2016 SayWhatClub Convention.
In 2018, Liza Sylvestre (second from the right), an artist with hearing loss, invited me and more than 50 others to take part in a Sensory Loss Symposium at the Weisman Art Museum in Minneapolis. I learn so much when I say “YES!” to participating and connecting. It was an amazing experience!

Also, researching to find solutions for newcomers on the SWC email lists led to some of my most meaningful connections, both brief and years-long. Volunteering resulted in helping myself even more than those I was trying to support. And, it kept me motivated to continue to learn and connect even when progressive hearing loss got me down.  

Movers and Shakers: There is so much creative energy in the Hard of Hearing community to connect with. I am continually initiating contact to find out more about artists, writers, advocates, communicators, service providers, and emerging technology developers who are doing great hearing loss-related work. Most of the responses I receive are from the actual creative person and it makes for some interesting email and messaging exchanges and even can lead to friendship.

Julia: “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.”

Julia: Boy, meaningful connections. What would my life be without them? I would not have known how to navigate hearing loss myths with my own family. My family would not have the communication tools that they use every day. My kids would not have the understanding of different needs for those with hearing loss that they do. I would not be able to pass on to others the importance of family/friend support and that they too need to be in the know. 

I wouldn’t have met two thought provoking, self-advocating ladies to start a business with.

Don’t stop living your life. Learn about new tools. Make more friends and share advice. Hearing loss and Hard of Hearing needs are different for each individual. But shared experiences help us stay connected. Everyone needs a shoulder at times. Even those with years of hearing loss experience can learn new uses for that tool box just by being connected to others who have an experience to share. Get out. Share. Grow.

Join Hearing Loss LIVE! Tuesday, June 7th and let’s get connected with Talk About It Tuesday!

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 Communication Practices Connections Hard of Hearing Hard of Hearing Defined Hearing Loss Hearing Technology

The Better Connect Academy with Jean Nalbantian

Sometimes things just fall into place. One day we are looking at The Better Connect Academy (TBCA) website and the next day Jean (John) is contacting us to invite us to guest on his podcast. It is great when the stars align and the universe conspires to connect like minds on the subject of hearing loss. Hearing Loss LIVE! talked with Jean in late March, sharing our passions and what we do. We got to know TBCA further when Jean was our podcast guest—video will be available May 16th.

Michele, Chelle, and Julia are Jean’s guests on the TBCA podcast.

May is Better Hearing and Speech month, and we are celebrating American Speech-Language-Hearing Association’s (ASHA) theme of Connecting – People. Our crossing paths with Jean and TBCA is a great example of connecting and the timing couldn’t have been better!

Jean (John) Nalbantian, CEO and Founder of The Better Connect Academy

Jean: I am Jean (John) Nalbantian, the CEO and Founder of The Better Connect Academy (TBCA). We are an online course (about an hour long) that teaches enrollees how to provide effective communication for Hard of Hearing (HoH) individuals. 

Providing effective communication is federal law per the American Disabilities Act (ADA); we can help.

I have over 25 years of experience working with people who are HoH and deaf. I hold a BS in Human Services Management and two Gerontology program certificates from USC. My passion has always been to help, ever since I was a kid.

I identified a need within the HoH population and after hearing the same complaints over and over again, I decided to develop a course that educates the general public how to provide effective communication. The course has been reviewed by members of the HoH and deaf communities to ensure that nothing has been left out. 

The course is accredited by two entities, the National Certification Council for Activity Professionals as a Continuing Education course and by the American Academy of Physician Associates as a Continuing Medical Education course.

When enrollees are done watching the course and have taken the quiz, they receive a certificate of completion, which is an asset to their current employment but more importantly, helps them communicate with HoH individuals.

The goal of the course is to educate as many people as possible, especially people who work at medical offices, hospitals, restaurants, government offices and others. Every single business and organization should enroll their staff. 

Providing effective communication is federal law per the American Disabilities Act. The ADA states: “The ADA requires that title II entities (State and local governments) and title III entities (businesses and nonprofit organizations that serve the public) communicate effectively with people who have communication disabilities. The goal is to ensure that communication with people with these disabilities is equally effective as communication with people without disabilities.” 

So why should businesses and organizations risk receiving official complaints about not providing effective communication? We can help.

We want every HoH individual to advocate for themselves and if they encounter a business that has a difficult time communicating with them, then they should give our information to the supervisor or manager of the business. It’s a serious matter but it can be alleviated.

Eventually, The Better Connect Academy will push for this program to be mandated to all businesses, but it will require all HoH people to support the idea. As we grow, we will also plan on hiring HoH individuals. 

We appreciate Hearing Loss LIVE! for giving us the opportunity to speak about TBCA.

Chelle: What a pleasure to meet Jean and to get to know his business, TBCA. He has a big heart and cares about effective communication for our community. We watched the online course video and hope businesses will take HoH communication needs seriously by taking the course. Many places I go lack effective communication and I am constantly educating. 

If you are HoH, share TBCA’s information when businesses get it wrong. I find most businesses mean well but they just don’t know. People know the ADA but they rarely get specific education. We can help, you can help, and Jean can help. We all need to work together to make a more accessible community. When you advocate for yourself, you’re also laying a path for others who come behind you. Start small with self advocacy by sharing TBCA website when you find businesses on the wrong path. 

Julia: Working with other like minds means more folks understanding communication needs for people with hearing loss. If you haven’t heard me say it in the past, then let me say it again, “One size does not fit most with hearing loss.

The Better Connect Academy (TBCA) gets it. TBCA’s online certification to help businesses to be better trained on communication skills with their employees who have a hearing loss matches up nicely with live training offered from Hearing Loss LIVE!—Sensitivity Training for Business owners with respect to hearing loss. 

If you are a business owner and you need training and education on better communication with your Deaf and Hard of Hearing employees, The Better Connect Academy (TBCA) has a great course for you. Better yet, combining TBCA’s online certification with in-person training by Hearing Loss LIVE! will give you a more diverse and well-educated staff with respect to hearing loss and communication. Think of how you can promote and grow your workforce with employees who are vested in seeing your company grow because you took the time to get to know what people with hearing loss face and what they need. 

Something else we talk about, you don’t know what you don’t know. Hearing loss can happen at any time for any reason. If you are already practicing good communication guidelines with all your employees, that hearing loss fear and unknown is eased and help can be sought sooner. Erasing the stigma before an employee is facing hearing loss will ease their fears around hearing loss.

Michele: When advocating, I always try to make the point that responsibility for accessibility and inclusion should be shared, not solely shouldered by the person with hearing loss. Twenty percent of the population has some degree of disabling hearing loss and the world needs to know how to effectively communicate with us. And, that doesn’t mean Sign Language Interpretation for over 95% of us.

The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities in several areas—employment, transportation, public accommodations, communications and access to state and local government’ programs and services. In addition, Federal Rehabilitation and State Human Rights Laws provide for full and equal access in these same areas.

However, not all businesses are proactive regarding compliance, and that shifts the burden of enforcement onto the person with a disability when there are issues. It is up to us to force businesses to comply by filing a complaint or lawsuit. We could use more help.

As customers, clients, and patients, with a communication barrier, we encounter the lack of effective communication daily. That is especially true in medical/hospital settings. The HoH need quality Speech-to-Text Interpretation/Translation, and that means captioning by a live stenographer on a screen provided by the medical facility or office. Many HoH people are unaware of the effective communication access accommodations available to them, or it doesn’t occur to them to request accommodation at the doctor or hospital. This needs to change.

We are thrilled that The Better Connect Academy (TBCA) is focused on helping those who serve the public own their part of the effective communication equation. We need more co-advocates like Jean who encourage entities to be proactive and provide them with the information and training needed for effective communication. TBCA’s online training course for employers and their employees is a valuable tool for spreading awareness of the HoH community and our communication needs and accommodations.

Watch our companion podcast here. Or listen to it on Spotify, iHeartRadio and BuzzSprout. Transcript is available on BuzzSprout.

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
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!