Hearing Loss LIVE! is what happens when three friends, with an interest in helping people
who are Hard of Hearing (HoH), decide to change the status quo of hearing loss help and support.
I started losing my hearing a little at a time as a teenager. I heard fine in class and in quiet settings, but I could not understand people well in noisy settings; the hallways at school between classes, in cars or from other rooms. My parents thought I was an obnoxious teenager asking for repeats. (I probably was an obnoxious teenager but not when it came to hearing.) With hindsight, we saw that it was the beginning of hearing loss.
When I was 18 years old tinnitus turned on suddenly with a never ending high pitched squeal. I called an ear, nose, throat doctor who did nothing to help me. He sent me home saying, “Learn to live it.” He didn’t give me one scrap of advice on how to live with it. There were nights of little sleep until one morning I decided I would NOT let this get to me. That night I put on headphones listening to music just loud enough to cover up my tinnitus, finally drifting off to sleep for the first time in a few months. I habituated and it’s a good thing too because cicadas and crickets now accompany that high pitched squeal.
I’ve been wearing hearing aids since I was 23 years old, an awkward age for hearing aids. That was in 1991 and there was so little information on hearing loss and hearing aids aside from audiologists who only said, “Wear these, they will help”.
It’s been a progressive hearing loss, with a few big drops over the years requiring bigger, better hearing aids. Even with my hearing aids I missed a lot of conversation. For many years I thought something was wrong with me which perpetuated my shame. I did not find out that hearing aids had limitations until 18 years into wearing them. I was angry when I found out. If I had known, I might have been able to do things differently a long time ago.
Thanks to my state agency, the Utah Division of Services of the Deaf and Hard of Hearing and a few support groups, I learned how to deal with my hearing loss starting in 2009. I learned more about technology and how it fills gaps. I learned self-advocacy which improved my life. I attended hearing loss conventions. Soon I had so many new opportunities and new friends who were also hard of hearing that I could not resent my hearing loss. I wound up with a whole new direction in life with more opportunities.
“I’m thankful for my struggle, because without it I wouldn’t have stumbled across my strength.”Alex Elle
My weakness became my strength. I would have never thought that 15 years ago. Now I want to share that strength with others who have hearing loss. There are options for people with hearing loss if given the right information. I’m here to share that with you.
What we know…
We need to reach not only the HoH who remain underserved and unaware of what is available to them, but we also need to educate society at large about hearing loss—many mistakenly assume all people with hearing loss know sign language—and our communication needs.
One size does not fit all. Defining your own needs is a challenge, and we can help.
When you are child and lose your hearing gradually, you have no idea that how you hear is not how everyone else hears. I was already hardwired to lipread by the time I failed the public school hearing screening and sent to the county clinic doctor for diagnosis. “Nerve damage,” the doctor told my mother. “She’s lipreading everything I say. Hearing aids won’t help nerve damage, and she will likely be deaf in adulthood.”
That was that. It was the first and last time I saw a doctor for my hearing loss in childhood. Being left to figure it out on my own is nothing I would wish on any child, but it also was an exercise in how really amazing the brain is at figuring out how to compensate for damaged auditory nerves. I gained many skills and strengths in the years of progressive loss that followed.
However, missing out on having an advocate, mentor, or positive example to learn from meant there was so much I didn’t know, and wouldn’t learn, until I reached my 40s.
I tried hearing aids for the first time at age 21 and found no benefit. I continued to try new technology over the years with the same results. In 2010 I was diagnosed with severe hyperacusis, which is likely the reason hearing aids were not a success for me.
I continued to cope well until I didn’t.
A major hearing dip in the late 1990s left me scrambling. An entire year of hearing aid trials—four different models and manufacturers at 90 days each—proved no more successful than previous trials. What I needed was information on how to live with hearing loss beyond hearing aids. I looked to my audiologist for answers and was handed a Harris Communications (currently Diglo) catalog as she wished me well on my way out the door.
After a time of leaning too heavily on my family and feeling like I was losing my independence, I decided that if no one else was going to teach me how to communicate and thrive in a world that wasn’t designed for me, I was going to have to do it myself.
The last twenty years have been a true training ground. I’ve experimented to find what works in the difficult situations that left me depleted, embarrassed, and feeling less than whole. Solo travel was a great way to gain what I needed to live well with hearing loss—self-reliance, effective communication and self-advocacy skills, problem-solving, and confidence. I have empowered myself to live well with hearing loss.
I am happy to say I am a very different person today—more self-assured and direct, a better self-advocate and communicator, and more confident for having mastered some of what seemed so insurmountable for most of my life.
Why not help others figure out how to do the same for themselves?
What we believe…
Every HoH person deserves access to communication no matter where they are on the hearing spectrum. They deserve to be accommodated in a way that helps them right NOW. Today. That includes gaining an awareness and access to the tools and accommodations that will help them live well with hearing loss.
I have spent the past twenty years as a CART provider. Communication Access Realtime Translation. Fancy acronym for live captioner.
I became a CART provider because helping others is what I have always been about. Providing equal communication access for individual with a hearing loss allows people to participate in everything from a board meeting to receiving a college degree. Though my trade is about being a silent partner, the mama bear in me cries tears of joy every time someone has success in their life because of such a simple, yet very misunderstood, accommodation.
Captioning for the Salt Lake Chapter of Hearing Loss Association of America, and captioning many different workshops around the state of Utah with Division of Service to the Deaf and Hard of Hearing I found many mentors here locally that helped me become a better captioner and I learned I had a voice as a hearing partner and a way to help educate about hearing loss.
One of the side benefits of surrounding yourself with a great group of hearing loss individuals, is you learn better communication with your clients, and best of all with your family members with a hearing loss. As a hearing partner I learned a whole new level of what hearing loss needs are, not just for the person with the hearing loss but their hearing partners.
I have watched over and over how much time and effort someone with a hearing loss has to advocate for equal access, especially when it comes to communication. We need to find a way to make the invisible disability that is hearing loss and the stigma that comes with it be visible and transparent. And the only way that will happen is if we openly talk about our experiences.
There is a world of knowledge for folks with hearing loss and their hearing friends, family and coworkers. But there isn’t always a clear way to obtain that knowledge. Hearing Loss LIVE! is what the world needs so we can help ourselves openly and without boundaries or restrictions. Together, we have the knowledge and the resilience to explore the unknown.
Why we care…
Being HoH often feels as if you don’t fit anywhere. Being out of sync with both Hearing and Deaf communities is isolating and depressing. By helping others find their confidence, increase their knowledge, and define their own unique communication needs, we hope to empower them to live well no matter what comes next on their hearing loss journey.
When HoH people become empowered, they are more likely to advocate for their needs. More people with hearing loss need to step up and ask for communication access.