By Nick Muscara
“Nick! Nick?”
My mom called from the kitchen, but I didn’t turn around. I was in my usual spot when I watched the television, right in front of it. My mom knew that deafness ran in our family so she knew what to do.
When I was 3, she took me to the audiologist who helped me get my first hearing aid. Black, blue, and red camouflage. I loved how colorful it was! I entered speech therapy, and a year and a half later I handed my hearing aid to my mom and said, “It’s too loud.” To this day, I don’t know if I really felt that way, or if I just wanted to fit in.
The truth is, I struggled to “fit in” for the majority of my life growing up. Throughout school, I was always the quiet kid, the reserved one, feeling like the oddball in almost any group. Most of the time, I was just trying to keep up with conversations.
Big group dialogues often had me lost, frantically going back and forth between faces only to receive blurred understanding. So, I tended to self-isolate. If people would talk to me, I’d usually end up with lots of “What? Huh? Sorry, can you repeat that,” and then I’d give up or make assumptions about what was said.
More often than not, it feels like I have to decipher what is being said. When I break the secret code, I’m usually pleased and then realize, Oh! I should probably respond. By that point, I already have to reorient toward the new puzzle coming out of the speaker’s mouth.
Sometimes I have good days where my hearing seems extra clear, whereas other days it feels muffled. There’s a lot of factors. Getting sick consistently obscures it. Noisy environments always make it difficult. Soft voices and accents are a struggle too.
Eventually, I got to a turning point of becoming so skilled at either guessing from context or simply nodding along and appearing to understand that the amount of “what’d you say” questions decreased. I routinely bluffed knowing the entirety of the dialogues I was a part of. Unfortunately, this was all an attempt to fit in.
Finding My Fit
I finally found my “fit” when I attended college. Although I still occasionally felt like the oddball, I realized my differences did not really matter. My friends saw something in me that they enjoyed and loved, and I added something special to their lives.
I started stepping into who I was, authentically showing up as myself and not the kid I had pretended to be for so long. Of course, this goes much deeper than my hearing loss, but I grew to love my differences and celebrate them as my own unique perspective on life.
A major draw of my undergraduate institution was its Deaf studies minor. As I grew up, my cousin taught me some sign language and presented new insights into her Deaf world, so I wanted to learn more. The minor taught a few levels of ASL as well as Deaf culture. These classes inspired me to examine my own hearing loss.
In my junior year, I set up appointments with the school’s audiologist, underwent new hearing evaluations, and received documentation of my hearing loss. I discovered both ears were affected and that my hearing loss predominantly blurs the range of sounds where consonants appear.
This made sense since I felt like I was constantly deciphering speech, frequently mishearing phrases, and misunderstanding the topic (which could turn out to be quite humorous). With this new knowledge, I understood myself at a deeper level than before. This documentation also granted me accommodations throughout the rest of my education, which helped immensely.
I began using bilateral hearing aids my senior year (delayed fitting due to COVID) and am very grateful for the clarity they bring. These devices were significantly less conspicuous than the aid I wore as a child, but there was something about them being noticed that actually brought me a sense of relief. My self-identity started to shift with the documentation, and it was fully solidified when I started using my hearing aids in my daily life. I became proud of being hard of hearing.
This self-acceptance boosted my self-esteem. I possessed the language I needed to describe my experience and felt empowered to seek out assistance, whether that be in the form of accommodations or simply asking for someone to repeat themselves. Once I fully accepted this identity, I began to advocate for myself much more, and my passion for spreading awareness of the Deaf community and hearing loss grew.
Deaf Gain
“Deaf Gain” is a term frequently used by the Deaf community to show that they feel empowered in their deafness, and they understand and relish the benefits hearing loss can bring to life, despite the overarching stigma of an often audist hearing world. Ultimately, the term pushes back against the concept of deafness being a “loss” or “impairment” needing to be fixed.
Deaf Gain reframes the idea of deafness into a “form of sensory and cognitive diversity that has the potential to contribute to the greater good of humanity,” according to the Deaf Studies Digital Journal. In my personal journey, my hearing loss taught me to be more adaptable, more empathetic, more observant, more patient with others, more appreciative of differences, and more aware of the considerations necessary for accessibility for all.
In graduate school, I dedicated several of my assignments to research involving the Deaf community. By the last semester of my psychology master’s program, I knew my career was heading down a path into Deaf services. I attempted to start a thesis project for examination of the prevalence of social anxiety in the deaf and hard of hearing population but was met by a stark lack of empirical research.
Nevertheless, I carried out a thesis on sign language acquisition’s effects on the brain. The project was intended to raise awareness of the benefits that full access to a visual language can provide for this population that often faces the serious challenge of language deprivation.
Notably, the vast majority of research on this topic fails to distinguish between the factors of deafness/auditory deprivation and sign language use when looking into educational, professional, social, and psychological outcomes. Numerous studies show the detriments language deprivation can have on the neuro- and psychosocial development of deaf children.
However, the onus customarily falls on hearing loss rather than the institutions and systems built that commonly underestimate the power of full access to a visual language. Through language, we understand others, ourselves, and our world. Without full access, we are left feeling lost as is frequently the case for those of us who navigate the world through the lens of hearing loss.
I am writing this piece in hopes of inspiring readers to be proud of their identities and advocate for themselves and those that they care about. Although my hearing aids have been a great help, I am hard of hearing with or without them. I am grateful for what my hearing loss has taught me, and I am grateful that it has provided a guiding light in my career.
Sign language has also been a blessing, opening up a whole new world of communication for me. I urge anyone who deals with hearing loss to consider learning the sign language of their environment.
In general, I suggest those with hearing loss revel in the silence, find peace in the quiet, and enjoy the little things you detect through your other senses. Your lived experience grants you a unique perspective on the world around you. Use it to your advantage, and don’t let anyone make you feel down because of it.
To readers who are hearing, please realize that we, on the other side, are constantly adapting to the hearing world. It does not give us a break. However, we notice your efforts when you make it a point to help ensure that we have as much access as we can. We notice when you turn on captions for us, face us when talking, and learn sign language to better communicate with us.
We appreciate it. We see you. We are grateful you see us, too.
Nick Muscara lives in New York City. Find him on LinkedIn.
I wanted to create a story that not only celebrated the beauty of differences but also conveyed the importance of empathy and understanding. My heart was set on crafting a tale that could empower children with hearing loss while also educating their peers about the significance of inclusivity.