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Advocacy Community Members Connections Hard of Hearing Hearing Loss Hearing Loss Conventions Tribe

Build Your Hearing Loss Social Support Network

Having a support network of friends is crucial for resilience during tough times, as in friends with hearing loss and others within the community. We all have our best buds for support but having friends with hearing loss gives us instant empathy. Having connections in the industry gives us insight and valuable resources. Many parents of kids with hearing loss are fierce advocates and also excellent sources of support. 

 Who is in your support network?

Most of us have friends and family from the hearing world. Making connections with others who have hearing loss takes a little extra effort. How do you find friends with hearing loss? It’s kind of like networking. 

Did we just hear a groan? A lot of us with hearing loss become introverts, if we weren’t already. Here are a few ideas to help:

  • Attend our Let’s Talk Tuesday workshops. We have a live person who captions the meetings so they are accessible. It’s only once a month. We won’t make you turn on your camera or participate against your will. Some people hang out and learn quietly with cameras off. Others participate in sharing experiences and thoughts. It’s a good way to get to know us, and others, with hearing loss learning a few tips and tricks along the way. When you’re comfortable, chat with us or reach out after. Sign up here.
  • Find a local hearing loss group. If you live in, or near, a big city, there may be a local group who meets in person. If you’re not in a big city, many HLAA chapters now meet online or have hybrid meetings (both in person and online). Like above, you can participate, or not, while you learn more. 
  • Take a class geared for hearing loss. We have online lipreading classes often. By the end of the class, we bonded and made new friends. Chelle teaches hearing loss classes in person at our local university through the Osher Lifelong Learning program. She finds the same thing happens there. We have 2 Super Saturdays coming up, the classes condensed into 3 hours. Click the link on the lipreading classes page for the schedule and registration.
Use Social Media

You can connect with others online too. There are a variety of support groups on Facebook, pages on hearing loss in Instagram, Reddit has a great Hard of Hearing Community and more. Follow Hearing Loss LIVE! on Instagram, Facebook, Twitter and LinkedIn. Start a comment on one of our posts and watch people reach out.

Light green vines with roses. A green blob with black font: Benefits of Volunteering: Meeting new people, sense of purpose, improve self confidence, make new connections. It's a safe place to build social skills with hearing loss.

Volunteering for a hearing loss support group will give you more friends with hearing loss. Chelle has volunteered for the SayWhatClub for years and many lifelong friends have come from that time. When working in a committee, you can’t help but make connections. Learn new skills as well. The SayWhatClub is always looking for volunteers and there are many options; the convention committee, social media, blog writing and more.

Attend a Hearing Loss Convention

This is a fabulous way to make lifelong friends with hearing loss. Go big and go to the HLAA convention near Phoenix, AZ next month. This has the largest number of attendees and an exhibit hall. 

The SayWhatClub will be in Springfield, Massachusetts which starts at the end of July. This is smaller, more intimate. Likely you’ll get to know everyone in some form by the end of the convention. 

The Association of Late-Deafened Adults has their convention at Clearwater Beach, FL this year in mid-September. This convention is bigger than the SayWhatClub convention and smaller than the HLAA con. They also use a lot of sign language so if that’s something you’d like to learn more about, check this con out.

All three conventions rotate from east to west and somewhere in between each year. If you can’t make it this year, perhaps one will be closer to you next year. Make it a vacation. You won’t regret it. They all have workshops to learn more about hearing loss and are accessible with the hearing loop, or another sound system, and captions. People are patient and they have big hearts.

Green vines and roses for a background. Green blob holds black font: Your social support network gives you resources, connections and empathy. Picture of 4 outlines of people connected in a circle.
Community Connections

Don’t hesitate to make community connections as well. People who provide services for our community have a wealth of information! They too have big hearts and want us to succeed. Here are a few examples:

  • Julia, as a CART provider, continually helps the Hard of Hearing community with resources and connections. Get to know your CART providers on a personal level.
  • Dr. McBride, audiologist, has been a valuable resource and she’s willing to help anyone. 
  • Is captioning advocacy something you’d like to do more of? Join the Global Alliance Speech-to-Text Captioning initiative. They too are looking for volunteers. Help improve captioning with this great group of people.
A few more ideas…

The more people you know within the community, the more support you have to lean on while dealing with communication situations. Meet others further along on the journey, who have more experience under their belt, or people who have the expertise you need to know more about. Don’t be afraid to ask questions. The more you know, the more you grow. Get their perspective, borrow their courage until you find your own. Experiment with tools and strategies. There is no one right way so pick what works best for you when you are looking for support for a situation.  One size doesn’t fit all because our hearing losses look different per person for a variety of reasons. 

Set Goals
light green vines and roses. A green blob with black font inside: Goals to expand your social support network: Join a lipreading class with Hearing Loss LIVE! Volunteer with a hearing loss organization. Join a social media support group.

We talk about hearing loss goals. Reaching goals is a way to build confidence and resilience. Create a social support goal this week:

  • Investigate your area for a local support group.
  • Join our Let’s Talk Tuesday on June 4th 6:00 PM Mountain time via Zoom. Find the link on our home page.
  • Research the 3 different hearing loss conventions, then ask questions.
  • Look into volunteering opportunities with a hearing loss organization. They are a safe place for people with hearing loss to learn more and expand.
Categories
Accommodations Community Members Connections Education Hard of Hearing Hearing Loss Sensory Loss Tribe Vocational Rehabilitation Services

The New Norm with Hearing Loss

This new norm with hearing loss can and often leads to an identity crisis. Who am I now that I have a hearing loss? What happened to all my skills? Will I ever be the same? How do I find a path back to my level of skills prior to hearing loss? Can I even do that? 

What happens if one person didn’t understand the communication error? A whole cadre of mis-communication can happen very quickly and errors can result in some haunting experiences. These experiences become the new norm. 

Written by Gloria Pelletier: M.S.W., L.C.S.W., L.I.S.A.C

The New Norm with Hearing Loss themed meme:
Picture: Black background with green flames along the left side. The 3 leaf logo of Hearing Loss LIVE! cupped in a flame. A picture of stairs leading up to a light with lots of vegetation on the side walls.
Green text: Rediscovering Who I am with hearing loss. 
@hearinglosslive
Moving Forward

These questions become paramount in rediscovering who I was with hearing loss. The path is NOT back but forward. What are the skills I need to communicate now with hearing loss? How do I find those skills? Am I capable of using those skills? 

All of these questions lead to – “Who am I now?” The obvious answer to most people is – I was the same person as before hearing loss. That isn’t quite true. With hearing loss I lost receptive language, now I needed new techniques to become proficient at conversations again. How do I do that?

Communication is how we project identification of self.

 How does that change the understanding of ourselves? I no longer knew who I was or even how to communicate with others. It becomes a quest for understanding of loss and the effects it has on  communication. A search for new techniques and receptive language. I became so discouraged that I was enmeshed in anxiety and depression. 

A new identity develops during this time period. An identity with hearing loss and all of the consequences of not having receptive language. (The younger the person is when hearing loss occurs; the easier the adjustment. They are still exploring their own identities. Hearing loss is who they are already, it’s incorporated into their identity.)  For those who have already established their identity, it becomes a major life crisis.

The path is not easy. 

Some try on the identity of culturally Deaf, but that doesn’t fit a person who is English based in communication. They can feel ostracized by the very community they are trying to identify with. This identity crisis becomes worse when some individuals try to learn ASL and are unable to achieve proficiency for communication. This effort to fit in is another failure which can cause more confusion.  I tried all of these strategies:

  •  Private tutoring for ASL 
  •  Deaf organizations for assistance but was told they are only for Deaf, not HOH/deaf. 
  • The audiologist – they said they did not get paid for rehabilitation so they were not able to help me. 
  • HOH agency and they did not have programs for teaching me how to live with no receptive language. 
  • Classes for ASL, even graduate level ASL classes did not give me fluency. It should be noted that fluency in a foreign language is almost always achieved in childhood, not adulthood and not with classroom education.
  • Psycho-therapy. I was sent to a specialist for the “Deaf”; not the hard of hearing.  There were many mis-cues due to my mis-understanding vocabulary.  I heard the therapist say I was missing “intrinsic learning”.  For years I thought she was inadequate to the task only to learn I heard it wrong. (She said incidental learning.) I did not check my understanding with the therapist. Of course I THOUGHT I understood. 

I lost years in my struggles to understand with missing sounds.

In the most unlikely place, I found answers.

It was my vocational rehabilitation counselor who began teaching me how to live with hearing loss. It wasn’t an easy transition.  With no structured program it was a struggle to teach me how to communicate effectively.  Three years later with hours of teaching and technology I can now communicate.

Black background green flames along the bottom of the meme. A green hand drawn heart at the top outlined twice. 
Green text: People with hearing loss have big hearts. We want to see each other succeed. Find your people. 
@hearinglosslive

Two years ago, I met Chelle Wyatt, HOH Advocate, in person thanks to a mutual friend. That’s when I learned my confusion was normal. Here was someone who was HOH and had gone through much of what I had to endure. She  learned to thrive with hearing loss. I wanted to thrive so I began the journey to reclaim my identity and my life. Next, I took the Hearing Loss LIVE! lipreading classes. On top of that, I found a therapist who was willing to learn how to communicate with someone who has hearing loss – don’t look away, don’t say hmmmmmmm, correct any miscommunication immediately and stay within 3 feet of me. (See the 3 Golden Rules for more information.)


Re-finding our true selves

Compensation skills can be learned. Communication skills are learned skills, we can learn them! Communication is just one way we identify ourselves. It might be how we are judged by society but it is NOT who we are. I knew my skills were still alive, but I could not find the pathway to connect them from brain to conversation. Receptive and expressive language are directly related. If I can’t understand the conversation, I can not express coherent  ideas. I have knowledge, but no way to connect what I know with what I can’t hear.  

The New Norm

There wasn’t a program for rehabilitation for HOH. There were no agencies to teach me how to communicate again. I found my tribe. Chelle and Julia taught me how to do “workarounds.”  They accepted me as a HOH person and taught me skills to survive.  Jack Clevenger, another HoH advocate, supported me in my clumsy attempts to communicate. (He introduced me to Chelle one day.) A priest and I spent hundreds of hours explaining concepts and strategies for communication.

Black background. Green flames along the bottom. 
Green text: Hearing loss is not who I am. It's how I communicate.
@hearingloss live
3 leaf logo in lower left corner.

My VR counselor helped me find solutions and technology to use to communicate. She fought against the dominant paradigm for  me.  Dr. Ingrid McBride, Audiologist, found solutions to my assistive technology (AT) needs and made sure the accommodations were correct for my hearing loss. She assessed my hearing loss, ordered the right hearing aids and adjusted them so I was immediately successful with them. She and I began teaching skills to HOH.

With the help of an supportive friend, I learned how to be by myself at night with hearing loss. He kept me company the first few nights and helped settle my fears ensuring me I was safe with current technology. (Video calls are great for people with hearing loss.) Chelle, Julia, my vocational rehabilitation counselor, audiologist and friends, I learned to communicate again. With new strategies and technology, I was able to access my knowledge and use it.

Chelle and I just gave a workshop to NASW-AZ, a major achievement for me! I went from no receptive language, depressed, isolated, and no identity to being able to interact with an audience of many people.  

We can be who we  are – sometimes it just takes a village!

You won’t want to miss Hearing Loss LIVE!’s upcoming podcast with Gloria Pelletier. In this podcast, we discuss how it happens and how to proceed through this kind of identity crisis. It comes out April 11th on our YouTube channel and other podcast streaming platforms. It’s available for free for one week, then we mark it private for our Workbook Packages. You can find transcripts on our BuzzSprout site.

Categories
Communication Access Communication Practices Communication with Family Connections Hard of Hearing Hearing Aids Hearing Loss Personal advocacy

3 Golden Rules

The 3 Golden Rules provide better communication outcomes for everyone with hearing loss. They improve communication if you have hearing aids, cochlear implants or no hearing devices. By following these simple rules, communication breakdowns would happen less often, hearing loss or no hearing loss. They make the difference between hearing and understanding.

A purple meme with a ring of gold that has leaves coming off it. White font. The 3 Golden Rules when talking to someone with hearing loss. Get their attention before speaking. Face them while talking. Be within 6 feet.

All 3 rules were considered a social grace but they have fallen by the wayside. We are distracted and multitasking. We are tired, hangry and have a lot on our plate these days. We could all learn to slow down and connect again, properly. The 3 Golden Rules require everyone to be present. With more intention, perhaps we will have less communication breakdowns in general.

For people who have hearing loss, these 3 rules are especially important. Let’s break them down from a hearing loss perspective.

Categories
Accommodations ASR (Automatic Speech Recognition) Communication Practices Community Members Connections Hard of Hearing Hearing Loss

Toastmasters with Harry Wolfe

Audible Talkers is a hearing loss friendly Toastmasters group started by Harry Wolfe.  It’s based in Arizona but because meetings are online via Zoom, anyone from anywhere can join. (Several members have been from different countries.) Chelle was invited to attend an online meeting during the pandemic by a mutual friend who also has hearing loss. By joining this group, Chelle improved her speaking skills and made a valuable connection with the hearing loss community in Arizona. She appreciates Harry’s efforts to make the club accessible to those of us with hearing loss. He also advocates to help Toastmaster clubs to become more hearing loss aware. Today, we introduce you to Harry Wolfe.

Zoom gallery view with 14 Audible Talkers Toastmasters members present. everyone is smiling. Several members have hearing loss in this Toastmasters group.
Audible Talkers Toastmasters first meeting online.
Categories
Accommodations Cochlear Implants Communication Practices Connections Hard of Hearing Hearing Aids Lipreading Live Theatre Open-Captioned Live Theatre

12 Days of Christmas for Hearing Loss

Let’s take a look at the 12 Days of Christmas with a hearing loss theme. Our friend Gloria Pelletier helped us craft this song.

HoH HoH HoH! Sing along with us… 

HoH = Hard of Hearing