May 6, 2019
Meet Samantha Moore: Adventurer, Artist, and Co-Chair of the 2019 National Young Leaders Program
This is a guest post written by Samantha Moore, a recent addition to the FBC head office! As Coordinator of the National Young Leaders Program, Sam works part-time with FBC’s Research and Education team to support the Young Leaders Program and run seemeas.ca, a Young Leaders-led social media initiative to help reshape misconceptions about those living with vision loss. Learn more about the Young Leaders program by clicking here, and about the #SeeMeAs campaign by visiting the #SeeMeAs website.
Photophobia, poor visual acuity and complete colour blindness are three major symptoms of a genetic eye disease called achromatopsia. In North America, achromatopsia affects 1 out of every 33.000 people. I am one of those people.
Growing up as a 1 in 33,000 statistic has a large impact on your life. Living with blindness doesn’t necessarily look the way people think it does, even though their perceptions are not based on actual knowledge or experience with the disability. Throughout my life I’ve encountered the daily challenges of living with achromatopsia, although the biggest challenges are invisible to others. Nobody sees when I am completely overwhelmed walking into a new space with large windows and being hit with a burning tidal wave of light.
From day one I was an artist. During my childhood if I wasn’t outside in the dirt, I was on the floor of my bedroom drawing. Rather than going to my local high school, I applied for the Regional Arts Program at Mayfield S.S. a well-known school for the arts in Caledon, Ontario. I was accepted. I sculpted, painted and sketched my way through high school. During my time at Mayfield I was lucky enough to have the opportunity to travel: first to New York City in 2009, and then to London and Paris in 2011. I also had family living in Italy that I was able to go and visit during the summer of 2010. Spending my days inking and sketching the local churches from my mother’s hometown was one of the most satisfying feelings. For me, travel and art have always been strongly connected. The first time I saw the Notre Dame Cathedral in Paris, I cried. It sounds strange, crying at the sight of a 700 year old Gothic cathedral, but Notre Dame has this powerful way of making you feel watched and watched over at the same time. It was one of the most beautiful pieces of architecture I had ever seen – even if I didn’t see it the exact same way as every body else.
Though often people say that traveling is a hobby, I believe that traveling is a privilege. Traveling for pleasure is not something that everyone is able to do. Traveling for people with a disability can be so full of obstacles that it becomes easier not to. I consider myself fortunate to have gone to the places I have been. But for me it’s not just about going to new places. It’s about facing the obstacles in my life and overcoming them, even though it’s hard. By seeing the world, I’m building the strength to conquer it.
These skills, of course, are learned. Independence is like a muscle; you need to exercise it to keep it strong. Fighting Blindness Canada is a place where I learned how to flex those muscles. More specifically, I learned how to flex them in FBC’s Young Leaders Program. Young Leaders is a unique program that provides people between the ages of 17-30 with vision loss the tools they need to succeed in building a strong career.
Thanks to Young Leaders, not only have I grown my professional network but later this year I will be going to a small island in Mcronesia by the name of Pingelap. Pingelap has always been close to my heart, because it’s also known as The Island of the Colour Blind. Although the population on Pingelap sits at about 250 people, an unusually large percentage of them live with achromatopsia. As a child I use to daydream about how cool it would be to live on an island of people like me. Thanks to FBC, that childhood daydream is now a reality.
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