“What is it that in our society we still have unwritten rules of how a person should fit in? That we still talk to the attendant of the person in the wheelchair instead of the person itself? Or giving strange looks to a person with a scar on their face, or with a limp on their body? What is it that we question someone’s capabilities and intelligence when finding out someone is different than you? Oh, how I wish this would change. See through someone’s appearance and realize they are just as human as you are, with the same struggles, pain, and need for love in this often cruel world.
I am one of those people who constantly faces prejudices about myself. I am one of those people who has to prove the contrary of those prejudices on a daily basis. I am one of those people who has had to adapt continuously throughout my life living with a disability. I am the only one among my lovely friends, family, and coworkers who has profound hearing loss—close to being fully deaf. To be able to adapt as a deaf person in the mainstream world is definitely something I am proud of and have worked hard for. Although, over the years I have become more and more exhausted from doing so. I’ve come to realize it’s definitely not someone’s nature to need to to adapt all the time, and it shouldn’t be. In times of need, it’s definitely a trait that gets you ahead—but I’ve come to find the more I try to adapt, the more I lose track of myself—who I am and what I need.
I was born into the world as the third child of what would be a family of four children with loving and devoted parents. With a heavy delivery as a baby, they later found out I turned out to have progressive hearing loss. They found out when I was nine months old. My mother recalled I was a very quiet baby who rarely cried, not even when I was hungry. A memory she never forgets and often tells me is, ‘You really almost never cried like a baby, there were times I didn’t notice it was time for you to be fed! I felt terrible.’ We figured if I didn’t cry as a baby, it was because my hearing loss caused me not to know crying was something I could do to get the attention of my parents—which is a way for babies to survive, as you know!
My hearing loss turned out to be progressive and has deteriorated over the years. For a long time, they thought my left ear was completely deaf and my right ear had severe hearing loss. Until the age of eight, I only had a hearing aid for my right ear. Later on they found out, as technology improved, I still could perceive a little sound in my left ear. At age eleven, my hearing deteriorated, and again at ages fourteen and fifteen. It has continued to do so, and now I am at the point in my life that it’s very possible my next step would be a cochlear implant. In medical terms I am deaf, but in daily terms I am still a person with profound hearing loss, since I still can perceive a little sound.
As soon as my parents found out I was dealing with hearing loss, they looked for every solution and every option for me to support my development growing up. At age two, I had already started speech therapy, which was considered strange and so not commonly done 27 years ago. My parents figured it would be best, since they thought it was important to stimulate my language development. For this, I am absolutely grateful. I got my first hearing aid at three and a half years old, which is late, concerning today’s standard is as soon as possible after you’re born. The moment my first hearing aid was plugged in, my reaction to my mother was, ‘Momma, can you hear me now?!’ As a small kid, I didn’t understand all the fuss around my hearing and thinking I needed a hearing aid so my mother could finally hear me.
As a toddler, my parents sent me to daycare, while my siblings didn’t go, to stimulate my social development. The mainstream daycare didn’t work out because it was too much stimulus for me as a child with hearing loss, and not enough accompaniment with me being hard of hearing. I soon went to medical daycare. Growing up, at first I went to school for deaf kids and those with hearing loss at age four, in a city far away from my hometown. A private taxi picked me up from home and brought me to school every morning. Imagine a four-year-old kid in a black taxi with an elderly man being my driver. He was kind.
Later, it was a woman driver whom, and I vividly remember, taught me how to pronounce the ‘R’ while using the car mirror and me sitting in the back. At age eight, the Dutch government changed policies and those who could do without special education should go to mainstream education. It was decided I was ready to enroll in a regular primary school back in my hometown. After having classmates with the same hearing issues as me, I went back to being the only child in class at this primary school with profound hearing loss. Years later, I understood it was quite the excitement for the other kids who said things like, ‘We get a deaf kid in our class!‘
During my years in primary school and high school, I had an ambulatory attendant who would monitor my development and my deaf needs within mainstream education. Teachers would use an amplifying microphone that connected with my hearing aids. They used to be very large and bulky tools which set me apart from the other kids. Technology definitely got better, smarter, and more sophisticated over the years. Sometimes, a teacher would send out a classmate out of the classroom due to bad behavior and would yell at the kid outside the classroom—and sometimes it happened they would forget to turn off the microphone!
I could, almost, hear everything that was said and done, to the curiosity of the other kids asking me, ‘Suzan, what is the teacher saying? Is James getting detention?’ Sometimes teachers forgot to turn off the microphone when going to the bathroom…luckily the bathroom was out of reach for my hearing aids to pick up, but sometimes I could hear teachers talking to other teachers, which was fun, of course. Every kid loves to eavesdrop, right? Only I needed a microphone for this!
I was a happy, loud and cheerful child. Having severe hearing loss didn’t stop me from doing whatever I wanted. I wanted to be able to be doing the same things as my siblings. I even joined the same choir as my brother and sister. My mother recalled I persisted in being in the choir, even though I would be singing out of tune due to my hearing loss. Perhaps I had been watching too many show tunes. Living in my own fantasy world, I totally wasn’t aware of me having limitations in comparison to the other ‘hearing’ kids.
The awareness of me being different from other kids came when I got older and started getting remarks from other kids. Sometimes they would bully me by whispering behind my back, calling me stupid, or personating my deafness, yelling, ‘I can’t hear youuuu, I am deaf!’ They would portray my awkwardness in the times I struggled to follow conversations or activities. It was one of those times I started to realize the world wasn’t so sweet and kind after being guided into it. It was when I started feeling uncomfortable with myself.
I am grateful bullying wasn’t something that had been going on for long and only was present in particular moments. I was able to stand up for myself and make sure to let those bullies know what they were doing was plain stupid and cruel. I just really hated that I was seen as someone who was different, and I often tried to hide I had hearing loss at all. All throughout my childhood and high school years, I wanted to be like any normal kid. I knew how to fit in, and remarkably, I was able to do so, but for my self-acceptance, it wasn’t a healthy coping mechanism.
In hindsight, I was not completely myself and often disregarded my own (deaf) needs. As I got older, I realized more and more how much energy it took out of me to function as a deaf person in the hearing world. I had been burned out for years without noticing it, and later found it hard to acknowledge. I was too busy fitting in the hearing world, I forgot there was a whole world out there for what I needed: the deaf world.
I have been able to go to college and receive my bachelor’s degree in social work, which wasn’t easy for me at all. It took me a lot longer compared to my peers, and looking back it had nothing to do with my intelligence but everything about energy and balance. Having hearing loss takes a lot of energy from me every day. I have to put extra work into functioning on a day to day basis, especially with communication and being aware of my surroundings. You know, deaf people have the amazing capability to notice everything around them. Our eyes are our ears. We use our eyes to read your lips and understand what you are saying. We use our eyes to notice every movement, every light, every change. We use all of our senses to get a complete awareness of what is happening around us.
I don’t hear your footsteps, but I definitely can feel them and notice the difference of whom the footsteps belong to. For communication, I use everything I see about a person—the non-verbal language you’re using, the emotions you show, the context of the situation. It’s how I navigate through relationships and communication—and life. As you probably can imagine by now, it is incredibly exhausting at times. Having to be fully aware of everything around you heightens your senses and requires continuous effort and attention—you don’t get to have a break, because what if you just miss something important in a lecture, a meeting at work, or customers needing service immediately? My personal challenge is definitely choosing my moments to rest and get recharged, as well as holding my boundaries of what I can do or not—at work, at home, with friends and family.
Speaking of work, when I tell people I have been working in the service industry for fifteen years, starting as a waitress in restaurants as a side job, now being a supervisor in a large and popular deli store with catering service, I often get surprised looks. Well, I definitely got more surprised looks, and still get, when I was waiting tables or helping customers and they found out I am quite deaf. The reactions are always different, like people who thought they should speak incredibly loud and slow while threatening me, as I was dumb and incapable: ‘Young lady, I want a cappuccino—you know coffee with foam?!’ Some people tipped me way too much and said things like, ‘I admire your strength and positivity, and enjoyed your service.’ To this day, I get mixed reactions like this, which means I often have to deal with a variety of situations.
Now, working in the service industry as a deaf person is not the most logical choice, but it has been a great way for me to develop myself, stand up for myself, and build character. I just love being around people and giving my best service to make someone’s day. It definitely helps that I have the social skills, and I definitely improved them by studying social work and working in the service industry.”
This story was submitted to Love What Matters by Suzan Reiling from the Netherlands. You can follow her on Instagram. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.
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