Throughout my childhood my family sat down to dinner together every night. One particular dinner stands out in my memory as the day my life changed.
"You have an eye disease called Retinitis Pigmentosa," my mom said. "Bet you can't say that three times fast!" my dad added, trying to lighten the mood.
"Your vision will continue to get worse."
"You'll never be able to drive."
"From now on when you go out with your friends you will have to tell them that you are visually impaired."
Those were the phrases that played over and over in my mind for weeks to come. I remember lining up with my classmates outside my classroom the next day and thinking to myself. I'm not like all of you. Nothing had physically changed from one day to the next -- but internally everything had changed. I feared that if my classmates knew about my eye condition they would think I was strange, and they would not want to be my friend.
I spent the remainder of my adolescence working hard to hide my disability and fake it as a sighted person. My goal in life was to not be noticed and to blend into the background.
I also worried a lot about what I would be when I grew up. I remember one conversation with my parents when we discussed possible job prospects for a blind person. My dad suggested a court reporter, since I could type really fast. My mom suggested a piano teacher, since I'd been playing since I was six years old. Another suggestion was to be a counsellor, since they spend so much time listening.
Some of the suggestions I didn't mind, but others I didn't like at all. What I learned from these conversations was that my options were limited because "blind people" couldn't do many jobs.
Shawn Marsolais and Blind Beginnings' member Alethea at Family Camp
I'm not sure where it came from, but one thing I've always had in abundance of is determination. I was determined to make something of myself. To show everybody that I could still excel despite my blindness. My biggest fear was to be a waste of space. I wanted the world to be a better place because I was in it. What I did not want was to be a burden to anybody.
It was this fierce desire for independence that caused me to apply for an internship to work abroad, and luck or fate that I got a position at a school for the blind in England. I worked with students ranging in age from eight to 18 and immediately fell in love with these kids.
There was Matthew who was an excellent writer and could be heard reading his most recent poem to his friends in the school halls. There was Jo who had an amazing singing voice and was known to perform in public. There was Siobhan who frequently had guest appearances on the local college radio station. These kids were talented, interesting, funny and smart. I was only at the school for six months, but the experience pointed me in the direction I wanted my career to go.
Skip ahead seven years:
After working in the blindness field for several years I began to see that there was a need for more services for children and youth who are blind and their families. There were pockets of service, but no continuity of service and very little for parents and siblings of blind children. For those reasons I started Blind Beginnings. We envision a world where seeing things differently inspires limitless possibilities.
Shawn Marsolais celebrating Halloween with Blind Beginnings' children
Many of the programs at Blind Beginnings were created based on services I wish myself and my family had had when I was growing up. Workshops where blind children learn that it is completely respectable and acceptable to be blind. Opportunities for parents to see other blind children, youth and adults functioning independently and competently. Programs where siblings are valued for their unique role in this special family. Family outings where children with low vision can have hands on experiences that expand their knowledge and understanding of the way the world is put together.
Blind Beginnings was not there to support my parents in those first few years when they were grieving for the loss of my vision. It was not there to support my sister's feelings of resentment for the extra attention I received and the extra responsibility placed on her. It was not there to introduce me to blind children my age or successful blind adults to show me that I was not alone and that there was a hopeful future for me.
Shawn Marsolais with Blind Beginnings' Youth at the Youth Leadership Training Weekend
Thankfully Blind Beginnings is there for children and youth who are blind and their families today. My own difficult journey towards acceptance of my blindness has been the inspiration for the programs now provided by Blind Beginnings. The disability that once caused me such shame and discomfort is now something I view as a gift that is allowing me to make a difference in the world.
For more information on Blind Beginnings visit www.blindbeginnings.ca
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