Living with Microtia didn’t define me, but it’s what made me

Personal Essay

Living with Microtia didn’t define me, but it’s what made me

Growing up it was obvious to me, and anyone who looked at me, that I had a disability. I was born with microtia, which means I have an undeveloped ear. This stood out to me from a very young age as I was the only member in my immediate family who was born with a visible deformity.

Being raised in Zimbabwe in the 90s meant I knew what it looked like but not what it was called or what caused it. I remember having to go for multiple hearing tests when I was younger, not knowing the importance of it and thinking it was something all the kids had to do.

Now as an adult, I see that was my parents’ way of trying to understand something they had no knowledge of. They were working with the best tools at their disposal, one of those being empathy. They taught me to live my life in a way that put my disability behind who I was and not bring it to the forefront of everyday life.

Despite their unwavering support I still struggled with this – although I was taught to love myself there were undeniably days when I couldn’t. Many years later when I became a mother, I once again realized that I would continuously be learning how to live with microtia.

Microtia, a congenital birth defect that derives its name from the Latin terms for “little ears,” occurs when the ear or ears do not fully develop in the first trimester of pregnancy. One child in every 9,000 is born with it, and the chances of having more than one child with microtia is less than 6 percent.

Microtia patients may range from having only a small ear to having no ear at all. The ear canal and the eardrum may be partially formed or completely absent. The severity of the microtia is measured on a scale of Grade I to Grade IV. I have Grade III, the most common form of microtia where the ear is small and peanut-shaped with no external ear canal or eardrum.

Parents, particularly mothers, often feel as though they are responsible for their baby being born with microtia and are concerned that they may have done something wrong during the pregnancy. Though there is an extremely rare tendency for microtia to run in families, there is no known cause for the condition.

The primary treatment for microtia is reconstructive surgery, but this wasn’t available in Zimbabwe when I was younger. After moving to the UAE when I was 11 and visiting an ENT specialist for the first time, the option of reconstructive surgery was made available to me. By that time, however, I was used to having a little ear and it became somewhat of an identifier – I was always recognizable and I didn’t mind that.

Facial abnormalities, hearing loss and a longing for social acceptance are some of the daily worries for those of us who are born with microtia.

Perhaps it was my upbringing or just physiological but I’ve never felt held back by microtia in the greater sense of life.

Every person has a different experience of navigating this world and feels comforted by different things.

I have been lucky enough to only occasionally not hear things and I’ve adapted well to it. I’ve always paid extra attention to listening for important sounds like my gate number being called at the airport or making sure people are always on my right side so I don’t have to try and read their lips or ask them a thousand times to repeat themselves.

Growing up, I had a big family and lots of cousins around my age who were so used to seeing me that my ear was never something anyone brought up or acknowledged. Everyone treated me the same as my siblings and before starting school it was almost forgotten about.

However, children can be cruel. Everything changed once I started nursery school at around four years old. I was bullied, I was made fun of and more often than not would run to my mom crying about being left out or picked on.

My mother always consoled me and taught me that people who make fun of people, particularly for things they cannot change, were not worth my time or energy. A peaceful soul, my mother would always tell me to walk away from it and not let it get to me.

My father and uncles took a very different approach. They taught me to fight back and it wasn’t long before my parents were being called to the school because I broke a boy’s nose. Although unorthodox, this method worked and soon enough, I was generally left alone.

In primary school, the teasing was few and far between as stories of my self-defense spread quickly. I also had my older sister around, and she’d step in with a few stern words for anyone who tried to put me down. Luckily for me, people stopped mentioning it directly to me as I got older, but wherever I went I always felt stared at.

Going through the different stages of life, it was always hard to be the one person who didn’t always fit it. It started in school with making friends and then as I got older it progressed to questions about whether I’ll ever have a boyfriend. As a teenager going through the normal self-esteem issues we all face, there was this added pressure. I started wearing my hair long and in styles that would drape over my ear and that seemed to help.

In my life I have hated many days, many experiences haven’t lived up to my expectations because I didn’t have any, to begin with. I dreaded school pictures because I knew no matter how neat my hair was or how much makeup I put on my face I couldn’t hide my ear. I avoided any social outings that weren’t with my family – they were and still are my safe space. Anytime I had to leave the house I would automatically prepare to put up this wall to block out any attention I got.

For years, I tried to hide it and was more subdued around strangers so I didn’t call attention to myself, and once I stopped doing this, my sisters once again came to my rescue. I remember one time as we were getting ready to go for a family lunch, they insisted on putting my hair in a high bun, exposing my ear for the world to see. I hated it but I went along with it because it was just family, they already knew.

That day my sister took one of my favorite pictures of myself, my ear in full view, a big smile on my face. Instagram was still pretty new then but I posted the picture with a microtia hashtag for the first time.

It was only at 16 that I finally realized that living with microtia wasn’t what defined me, but it’s what made me. It was only then that I started to do more research into this abnormality that had hung over me like a dark cloud for most of my life.

I slowly but surely started to become less self-conscious, my ear becoming a part of my identity that I learned to embrace.

When I first found out I was pregnant I was so concerned about how I was going to navigate this with a child. I knew there was an extremely low chance of her having microtia as well but I was concerned about how I would teach her about it and how it would affect her socially when other kids asked her what’s wrong with her mother’s ear.

In the three years of having my child, I’ve learned that children just accept what they see. So, for now, my daughter sees a difference between her ears and mine but doesn’t question it and one day when she does, I’ll be ready to explain to her that not everyone is the same and that’s okay.

The social aspects of weird looks and stares still happen almost every day, everywhere I go. It makes me wish people would just ask or even allow their kids to ask. Embracing our differences is definitely something we need to be more open about in public spaces.

It was only at 16 that I finally realized that living with microtia wasn’t what defined me, but it’s what made me.

Every person has a different experience of navigating this world and feels comforted by different things. For me personally, it’s quite simple. Don’t avoid the abnormality in the room, instead, ask me about it and let’s have a conversation. I think it’s similar to anyone with hearing loss, make sure you have my attention, favor my right side and don’t get offended if I don’t hear you the first three times.

I’ve always wondered why microtia is not widely known but I’ve come to realize that it comes down to the fact that although it does affect lives in a big way, it doesn’t endanger lives and is still only affecting a small portion of the population who rely on constant assistance in relation to other disabilities.

This definitely needs to change, as society tends to only place importance on things that are debilitating on the surface. If more awareness and understanding was brought to light on the silent struggles, and individuals were given more space to speak on their experiences, it makes it easier for young children to navigate being different.

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