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Life is What You Make it

I want you to imagine giving one of your friends a high five. Simple right? Now imagine trying to give someone a high five while you have your eyes closed. Not so easy now is it. It’s crazy how such a simple task can be turned extremely difficult once you take away one’s vision. For me, this is something I face everyday.

I am a 17-year-old from Peterborough, Ontario. My name is Emilee Schevers and I am legally blind. I was born with a genetic condition called Cone Dystrophy, as well as nystagmus (shaking eyes). I can not see distance, colour and am very light sensitive. So, basically my sunglasses are my best friend (all 10 pairs of them). My sunglasses are just one way that I embrace my disability and make myself unique. I also love of motivational speaking and use it as a way of sharing my story. I share my story to educate others and spread public awareness to break the stigma and change stereotypes or misconceptions about blindness. In fact, did you know that 90% of people who are considered blind still have some remaining vision. See! Now I’ve done my part. Other misconceptions that people have had are me wearing my sunglasses because I’m on drugs or recovering from a concussion, or that my cane is a stick, numb chucks or a metal detector!

To ensure that I am doing the most in my community I am a volunteer with my local Council for Persons with Disabilities, a CNIB (Canadian National Institute for the Blind) Ambassador, Cuddles for Cancer Youth Council member, and the co-founder (along with my sister) of a social media campaign called Tru Faces. Tru Faces is an online community for individuals with disability where each of them can come and share their stories as well as meet others facing similar challenges. We make YouTube videos and do Instagram features. I have even hosted information booths within my school to raise awareness. It always starts with the little things that can make a big difference. As well, I competed in the Miss Teenage Ontario pageant a few months ago.

I am someone who is comfortable talking about their disability to others to educate and raise awareness, but believe it or not, not more than a few years ago, if you had asked me about my disability I probably would have told you that I didn’t have one. I was completely in denial with the mind-set that I was completely “normal”. So, what changed? A few years ago, I started attending weekend programs at a school for the blind. This school designed for those with visual impairments has given me so many amazing opportunities, like learning kitchen adaptations, a chance to try accessible sports, and even riding 40km on a tandem bike in 30+ degree weather, which was not as much fun as you may think it was. As well, being able to connect with those who have similar stories to mine has given me a chance to see that there really is nothing to be ashamed or to hide. I realized that there is no such thing as normal. I strive to ensure that others in the same position that I was in have the same opportunities to connect, which is one of the reasons that we created Tru Faces.

I am always making it my mission to use my story to help other understand what vision loss is like and I highly embrace my disability, but that doesn’t mean that I AM my disability. It is a big part of me, but I am more then just “the blind girl”. In fact, I am just like all of you. I coach gymnastics, do curling, drawing, and love doing what any other teen does, which also includes traveling and exploring the world around me, which is easy because I can ride the city bus for free.

Something that I think is important when having a disability is being able to laugh at it and make jokes. Yes, this does seem slightly weird or awkward, but that is just another part of the stigma around disability that society has melted into our heads as acceptable. I have “blind moments” ALL. THE. TIME. And if I am not able to laugh at them and accept them, then it becomes that much harder. People with disabilities are already at a higher risk of mental illnesses and depression for this exact reason. For example, I was having a buffet breakfast one day and I was going to grab a glass of orange juice. So, I grabbed the pitcher and poured it into the cup (with my finger over the edge of the cup to ensure I don’t pour to much and overflow the glass #blindlifehacks) and went back to my seat. I then took a huge gulp and almost immediately spit it out. I then looked over at my friend who was seated beside me and asked, “what colour is this juice?” and she proceeded to tell me that it was a pinky peach colour. We both then laughed because what I thought was orange juice had really been grapefruit juice! It’s moments like these that are funny because anyone else would have seen the colour difference and avoided that situation. I laugh because I can’t help it. I am not going to be able to change this so why not embrace it.

I have mostly reflected on the positives that come with being visually impaired, but it also has it’s struggles as well. I am faced every day with people staring at my white cane or talking to the person I am with instead of me or questioning me for being blind when I don’t have my cane out or can use my remaining vision to see something instead. I can’t even match my own socks for goodness sake!! I wouldn’t say my life is hard, but I wouldn’t say it easy either. Have a disability doesn’t mean its always bad, it just means that the rollercoaster has more hills. Things are constantly having to be adapted and changed to fit my needs for me to be able to participate, and not everyone is always as willing to provide these accommodations. This can sometimes be discouraging for those with disabilities. It can make them feel unwelcome or sometimes even a burden on others because of their needs. I used to always think that I was so high maintenance to my teachers and parents that I eventually stopped asking for accommodations and advocating for myself. I then realized that these were things that I NEEDED. I wasn’t asking for them to make everyone else’s lives harder, but because I had just as much of a right to be included and supported as everyone else.

We often don’t realize how lucky or how fortunate we are to have something until it’s gone. I take in all my remaining vision with gratitude. I am often asked if I wish I had full vision or if I want a cure. The answer is no. I can’t miss something that I never had. I am always finding the ability in my disability and wouldn’t change a single aspect of my life. Yes, it is possible to live a wonderful life even with a disability, and yes you will overcome your barriers, and yes you will get through the pain. You are the one in charge of your own life so make the most of it.

~ Written by Emilee Schevers

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