As you may have gleaned from our blog posts, our weekly YouTube Series, our podcast, and our ridiculously funny social media content – I am not shy. I am not quiet. I am loud. I have been blessed with a strong personality, the ability to “find the funny” in every situation however wildly inappropriate, a penchant for colorful language, and the inability to hide any emotion on my face. I am also Italian, and enjoy conflict in any form – maybe a little too much – because I will not back down, ever. Taken together, it is the perfect blend of personality and character traits to create a strong self-advocate. As fate would have it, my fiery personality is complimented by a disability that requires constant self-advocacy all the damn time.
My hearing loss is always at the forefront, causing a disruption. I cannot think of a scenario where I do not require an accommodation, a modification, or a complete shift in practice to ensure accessibility.
A brief sample of the unexpected places where my self-advocacy for my hearing loss needs takes center stage:
Emailing a Doctor’s Office After They Have Left a Voicemail:
“I am unable to effectively use the phone, and would prefer text based accommodations.”
Taking a Walk with Someone:
“Excuse me, I am going to move you to my left side as that is my relatively stronger ear.”
Watching TV with Friends:
“Would you mind putting the captions on as it will be easier for me to enjoy the show?”
Dining Out:
“I am going to be a pest and ask that we swap seats – the restaurant is really loud and it would be easier for me to hear you if my back is up against the wall.”
In My Classroom:
“Could you try that again a little bit louder and try to speak a tiny bit slower? Remember, Mrs. Lane’s ears work differently than yours and I want to be sure I hear everything you say because your words are important”.
Driving in the Car:
“So – because I am driving – you are on my right side which is my worst ear, but not by much – I will need you to speak louder – not yelling – but louder because I am unable to lip read you while I am driving.”
Doing Chores at Home:
“Is the washing machine still running? Did the dryer finish the cycle? I can’t hear the machines anymore – but don’t want to wait too long because I need to keep the laundry moving.”
Working with Brad:
“You did it again! Start the story over again because you disappeared into the kitchen and we can’t hear each other through the walls!” (Author’s note: I am even worse when I am talking to him – one day I was crunching on Teddy Grahams, talking with my mouth full, and crinkling the bag inside the box.)
Due to years of experience, I have curated an arsenal of stock phrases to use when I need to advocate for my hearing loss needs. I am able to quickly assess the situation and make a snap judgment as to what accommodations or modifications are required for me to be able to access what is needed for that particular interaction, appointment, activity, meeting, or social engagement.
This quote, “Just because I carry it well doesn’t mean it’s not heavy”, came to mind as I wrote this blog post.
If you watch me in the midst of a self-advocacy moment, it looks seamless. Easy, even. Perhaps effortless.
It’s not. It’s exhausting.
I have an incredibly supportive network of family, friends and coworkers, all who are willing to accommodate my hearing loss, and for that I am grateful. I would be remiss if I did not share that I have twinges of guilt due to needing something different. My bubbly demeanor and raucous laughter disguises the deep seated feeling that I am a burden, wishing that I had typical hearing.
My steady speaking voice, fearless eye contact, and firm handshake squelches the steeling of my nerves prior to disclosing my hearing loss and requesting accommodations to unfamiliar people in an unfamiliar situation. I have no control over their impressions, judgments or actions that they may take once this information has been revealed.
The constant torrid of stories tumbling out of my mouth along with my high energy bouncing and bopping around shield the fact that most afternoons I need to crawl into bed for a nap to be able to navigate the rest of the day. My exhaustion is never on display, but it is always there. The constant communication about my hearing loss needs wears me down more than I can ever convey in words.
You see before you an assertive, confident self-advocate, but do you know how it started?
I came home from school crying because my assigned seat was towards the back of the classroom and I couldn’t hear the teacher.
My dad told me that I needed to march back in there tomorrow and tell the teacher that I needed my seat changed.
I was six years old.
This blog post is dedicated to my parents, Anne and Carl DeMatteo. Thank you, Mom and Dad, for giving me the agency, the words, and the courage to speak up for myself and make it known that the environment changes for me, not the other way around. I am not a parent, but I can only imagine how hard it was for you to take a step back and let me try on my own first to get the accommodations I needed. Well done, even though you created a monster (albeit a charming one).
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