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Why I Won't Let My Disability Hold Me Back

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As anyone who lives with any kind of medical condition knows, it can be trying at times. Sometimes you don’t notice your difference as much as other times.

I have Moebius syndrome, which is a rare neurological condition. A few of my cranial nerves did not form properly, leaving me with facial paralysis and a speech impediment. The speech issue is the hardest thing for me on a daily basis.

Today I was at Starbucks and I ordered my usual nonfat iced white mocha. Sometimes the barista understands on the first try, but today it took me multiple times saying it for her to understand. There was a blender going in the background as well, so that made it even more challenging. What made it worse was that my dad was with me, and when things like that happen in the presence of other people, it’s a bit humiliating and makes me remember that yes, I am different.

If it were a few years ago and a barista didn’t understand me at Starbucks, I just would’ve changed my order to something easier to understand. The easy way out.

My last two years in a journalism program at college changed me. I will no longer be held back just because I have Moebius syndrome. I figured out a few things in college. It really shaped me as a person and made me realize that if I want to live, if I really want to have a life, I can’t let Moebius hold me back.

One thing I figured out is that there’s more than one way to get things done. I did a lot of emailing during the journalism program. It works a lot better for me than calling up someone on the phone. I can explain a bit about myself if they then want to follow up with a phone call. When I have to give my name at a doctor’s office or give my address to sign up for a library card, I often just give the person my driver’s license. It makes things a lot easier. If worse comes to worst, I write things down for people.

There is so much more to life than what you see inside your comfort zone. Going to college where I knew not one soul was absolutely terrifying, but I did it and met some of the best people who are now in my life for good. I’m even moving on to university in the fall. I believe you have to take risks and chances and step outside your comfort zone if you want to grow as a person. It will help you find who you’re truly supposed to be in life. I want to volunteer with and eventually work for non-profits (I did an internship with Autism Speaks Canada), I want to travel and I want to write a book.

The biggest thing I realized over the past few years is that I need to get out there and raise awareness of Moebius syndrome and other disabilities. As people with medical conditions, we are advocates. We can share our stories with the world and make the world a more tolerant and understanding place for all. This is what I want to do in life — be an advocate and raise awareness. Most of my writing in college was about disabilities, and that is my true passion in life. We all have a voice. Let’s use it to advocate for ourselves and for others!

Celebrating diversity and raising awareness of Moebius syndrome. (Photo by Kelsey Ferrill /The Press)

I implore all of you to look inside yourselves and see that you are worthy of so much in this life. We are all, regardless of our disabilities, worthy of so much. If you have dreams, chase them. If you have goals, get them done. Know that you can, because you can!

We also are the best advocates. We know what it’s like to live with medical conditions, and we have an opportunity to educate others, let people know what it’s like and really make them see that we’re all human beings trying to find our place in this world. Education and advocacy are vital to making the world better and more tolerant. When people know about our conditions, maybe they won’t feel the need to stare, point or make comments about us. We have the power to change the world, we really do.

This is why I will not let having a disability hold me back, and why I believe no one else should either. We are all worthy of so much. We are all Mighty.

Originally published: August 14, 2015
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