Finding Your Hearing Loss Tribe

Finding your hearing loss tribe is uplifting. As we walk the beaten path of hearing loss (it’s one in five people), those ahead on the path help lighten the journey by sharing strategies and technology. They give hope.

Attending a hearing loss convention is even better. It’s a world made just for the hard of hearing with live captioning, hearing loops and understanding people. Everyone repeats as needed and faces us. We find things to laugh about and learn from each other.

Thank Goodness for the Internet!

Chelle: It took me a long time to find my tribe. I was 24 years old working in a salon with hearing loss and hearing aids. I lived in the desert in California where snowbirds came for the winter, many of whom wore hearing aids. When I was brave enough (not often) I’d ask them about their hearing aids because it seemed like I was missing so much! They didn’t know much either. The hearing aids helped, we agreed. The age difference set me apart some too. I did not know anyone else my age with hearing loss for years.

The internet opened up the hearing loss world a little more. I found support groups in Self Help for the Hard of Hearing (SHHH) and the Association of Late-Deafened Adults (ALDA) but the closest chapters were 2-3 hours away. I did find an online community for those with hearing loss called the SayWhatClub (SWC). They operated on an email list service which was accessible! I loved email, where I had equal footing in communication. Even though we didn’t meet in person, I found a common bond with them and felt less alone with my hearing loss.

Meeting the Tribe in Person

The SWC arranged a campout at Rocky Mountain National Park. I picked up another person from my email list in Vegas, she was close to my age. Together we drove to the campout. I spent 4 days in the presence of about 30 others with hearing loss and loved it! We accommodated each other and made sure everyone felt included. That weekend, I hardly slept because I did not want to miss a minute. I left tired, but with a natural high. Attending this gathering, I learned what finding my tribe felt like.

Then I discovered Burning Man and my attention was diverted for several years. I learned enough from SWC to carry on until my next big hearing drop and life change in moving to Salt Lake City. I found a Hearing Loss Association of America (HLAA) chapter in town and became a part of their team. They sent me to my first hearing loss convention in 2012 and I found hundreds more of my people where I experienced that natural high again. I started attending SWC conventions which are smaller but it’s easier to get to know everyone.

Through attending meetings and conventions, I made long-lasting friends and created a wide network of people to connect with as needed. I came to think of all my new friends as my tribe, because they got it and we all worked together. (They didn’t have to have hearing loss to get it, there are hearing people who get it too.) I treasure time with my tribe. 

Community in Hearing Loss

Julia: I remember when Chelle introduced the concept of being a tribe at an HLAA meeting years ago. And I thought, yeah that fits. A lot of time when we talk about individuals who are hard of hearing, they were a part of the hearing community and were able to hear their language and communicate in that language, and now that is not the case. How you live with hearing loss in the hearing world comes with the success of finding individuals that are like you, may have experience with some of the same struggles and/or share a success that helps you through a struggle.

When providing CART, I am performing a silent partnership. Our job is to type what’s being said, not advise. It’s part of our ethics code. But our local HLAA, Salt Lake Chapter sure took me in and made me part of the Tribe and I enjoy the friendships it has brought me and often collaborate with them on local events. Because every Tribe needs a support system. Listening to their experiences and life changes has shaped my adult years with respect to services I provide and the way I communicate with others around me.

Captioning a Comedian

In 2019 my bid was accepted to cover the SayWhatClub’s Sacramento convention. This is a group of very inviting, high energy individuals. They gather as a tribe and take on whatever venue the conference is held at. They decided they wanted to try a comedy club. The local host asked if I was willing to give it a try. Hey, why not? I’m game! Not only did this group’s love of life give me an opportunity to do something new, it helped a business learn how it can have equal access to customers on a larger scale.

At a recent SWC meeting one of the members who attended that night shared her appreciation. She commented “those of us with a hearing loss are left behind when it comes to comedy. We are usually the last to laugh while we try to understand the punchline. You allowed us to laugh with the punchline.” The comedian that night was very moved and wanted more information on equal access to communication. So, one hearing partner, a group of people with a hearing loss, were able to educate many people about communication access.

Join our Tribe. Let’s keep moving forward and change the thinking of equal communication access.

Wandering the Wilderness Alone

Michele: Like most people who lose their hearing, I didn’t know anyone else with hearing loss and felt like I was wandering alone in the wilderness. I had no idea there was a place I belonged.

Throughout my childhood and young adulthood I simply considered myself a hearing person who didn’t hear so well. I didn’t feel as if my experience was as valid as someone with a disability, and I certainly didn’t consider my hearing loss a disability. I knew there was a Deaf community of people who used sign language to communicate, but I in no way equated my experience to theirs.

Little Hope Without Tribe

In my late thirties and early forties I did begin to ask my audiologists for more information. The only information I got in response to my questions was a Harris Communications catalog with equipment for the deaf. Nothing about support groups or state agencies that provided services to the Hard of Hearing and Deaf.

When I moved from Georgia to Minnesota in 2006 I was looking for work. I qualified for job-seeker assistance with the state WorkForce office. They educated me about Deaf and Hard of Hearing Services Division (DHHSD) in case I needed any special equipment or an advocate to help assure a potential employer that there were accommodations available for any issue that might arise due to my hearing loss.

Unfortunately, my local DHHSD office wasn’t much help outside of the partnership with the WorkForce. I didn’t feel as if they understood my needs as a member of the Hard of Hearing community. They seemed more focused on the culturally Deaf and sign language for communication access. To be fair, I didn’t know enough about my own needs to ask the right questions.

Desperate for Help

I searched the Internet and came across a SayWhatClub newsletter article someone had shared on their personal blog. When I found the SWC website, I asked to join. It was life-changing. I found others just like me. People who told the same stories, had the same challenges, and who offered advice and information by sharing their own experiences and successes.

That was over 13 years ago and I’ve learned so much from my tribe of Hard of Hearing peers and professionals. I wonder how different my life might have been had I found my tribe much sooner?

Finding Your Tribe, a Goal

One of the core goals of Hearing Loss LIVE! is to spread awareness of peer support, and to connect with those who are feeling alone. We know firsthand that finding your tribe has many life-enhancing benefits and makes the journey with hearing loss less daunting.

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