My personal journey with disability
Happy Disability Employment Awareness Month!
October is Disability Employment Awareness Month, so I thought it fitting to share my own personal journey with disability: my hearing...or lack thereof. In recent years I have been much more open about my hearing loss, and have found my voice as an advocate for myself and others, but let me tell you—that wasn’t always the case.
For most of my life I tried to cover up my hearing loss by any means possible—lying, hiding my hearing aids, and preferring to come off as “clueless” rather than disclosing my disability. Until the past several years, even my closest friends probably didn’t know I had hearing loss. It has definitely been a journey throughout my life as I’ve learned to accept my disability (and dare I say even embrace it?!). Here we go.
I was diagnosed at the age of 5, after my mom noticed me singing the wrong words in songs and my teacher noted I was missing directions and cues. I got my first hearing aids shortly after. They were huge, loud, and filled up my entire ear canal. I was excited though, because I got to pick out the color, so obvi they were bright purple and super cool. Then came the first day of first grade. My peers did NOT think my purple hearing aids were cool. Not at all. In fact, they called me “moose ears” and made them scream in my ears with feedback and ran away laughing. I still remember that feeling of dejection, embarrassment and shame like it was yesterday.
Catch the purple scribble on the ‘95 audiologiy report?
Little Angie had some notes of her own to add! :)
Finally, the bullying was so bad that I made a deal with my parents that I would sit in the front row at school and if my grades dropped the hearing aids would go in again. I kept this deal, kept my grades up and ditched the aids until I graduated high school and attended college.
I managed to get by, but not without consequence. So many jokes I didn’t get, because I didn’t hear. So many people calling me an airhead because I said “what?” just a few too many times. Always missing the secrets whispered between friends because I can’t hear pitches that low. So much energy expended just straining to hear—all to fit in and avoid the shame of being bullied for my disability.
In college, I realized I couldn’t skate by without them anymore. The large, echoing lecture halls in combo with my increasing severity of my hearing loss made college life too hard. So I got my first pair since age 5 at the age of 18.
I was BLOWN away, and so overwhelmed I started crying and ripped them out. For the first time, I learned that the turn signal in a car makes a clicking noise. I heard the birds chirping in the trees overhead as I walked to class. I heard every paper shuffle, every pencil drop, every sniffle and sneeze across the room, and my brain wanted to explode.
I never knew how much I had been missing out on, how many sounds I had never heard. How loud, alive and overwhelming the world is, and though I could definitely hear better, I wasn’t sure I liked it.
I still hate my hearing aids most of the time (the intensity of sound is still hard to manage), and believe it or not, even adults can be cruel about my hearing loss. I’ve been told to “turn up my damn hearing aids” when I miss a comment, been called Helen Keller, because of course I have vision loss too. Hearing is not a passive activity for me, and never will be. It takes effort, focus and lots of energy.
An excerpt from my first audiology exam in ‘95
My hearing loss has worsened over the years, unfortunately. At my last hearing test, the amount of conversation my ears actually HEAR (without my aids) is only 12%, but my comprehension is much higher. I have learned to compensate over the years so well that most people still don’t believe I have hearing loss. It’s scary to know I will likely someday lose ALL of my hearing.
Here’s one of my audiograms from a few years ago—I drew in normal hearing range and you can see my graph charted below
But this is the funny thing, and something I have come to learn with time and my 5 year old self would never have believed. I WOULDN’T CHANGE IT.
Throughout this journey of hearing loss I have learned so much about myself, others, and life. I have learned to be an intentional listener, because I have to focus, use contextual clues, be present, and read lips and body language to fully hear people. I have learned to appreciate disability in a very personal way, and have dedicated my career to supporting kids with ALL abilities.
(And to the first graders who bullied me—I totally forgive you—I understand the fear of not fitting in, trust me. I understand the limited knowledge of little kids about disability and differences, and realize you weren’t meaning to be mean, you just didn’t know better).
I’ve learned some sign language, because I may need to use it one day, and my husband continues to learn too.
I believe I am kinder, softer, and more compassionate because of this experience. I am definitely louder, more energetic, and a very tactile learner and feeler. I am more intentional and active in every interaction I have, whether it’s with my friends and family or the grocery store clerk, because I have to, and because I believe it is necessary to create and facilitate human connection all over the place.
I like being able to take my hearing aids out and feeling a sense of peace and quiet I can’t explain. I like being a deep sleeper because little noises don’t wake me up. For as many difficulties there are that come with my disability, there are advantages as well.
I have learned that my best friends will put subtitles on for me without me having to say a word. The moment I knew I would marry my hubs was when he took me on a surprise date: to the first movie theater in Seattle to have closed caption glasses available in all theaters; and get this: he wore them with me so I wouldn’t feel isolated and alone. I have unwavering support from my parents, who always had savings put away for when my hearing aids break, because SURPRISE! insurance doesn’t cover them and they are 5k minimum and necessary for my daily functioning—a rant for another day.
Subtitles (and John Oliver) for life, baby!
So there’s my story. This is probably the most I’ve ever shared, and I’m trembling writing this out right now. But it’s important to share our differences—it’s what makes us unique, amazing individuals, and I’m proud to share the journey I’ve been lucky enough to lead, hearing aids and all. I hope this blog and social account can help in some small way to de-stigmatize disability and encourage a culture of inclusion and belonging. Because remember, disability is a strength!
Happy Disability Employment Awareness Month to all my disabled friends and allies out there!
TL;DR
October is Disability Awareness Month, so I am sharing my personal journey with disability.
I was diagnosed at 5 years, and was bullied often for my hearing aids, so spent my childhood trying to cover it up and hide my disability.
This led to missing out on lots of aspects of life, and shame and embarrasement of my disability.
I have learned to accept, and dare I say embrace?! my disability over the years, but it has been a journey.
I feel my hearing loss has made me a better listener, more intentional conversationalist, and more kind, present, and accepting of differences. Disability is a strength!