Youth Speak Out About Vision Loss

January 5th, 2014 by FFB Canada

Thanks to the support of RBC Foundation, our 2012 Vision Quest conferences in Edmonton and Toronto included Youth Spaces. In each city a panel of youth shared their experiences living with vision loss – there was laughter and a bit of heartache.

The silence around the impact of vision loss is profound. Adolescence can be a particularly difficult time. Peers are starting to date, drive or choose careers, and the future implications of vision loss start to become reality. Compounding this is the fact that, as one panelist shared, “high school kids are mean.”

In Toronto, Stephen Aylward, Jessica Milicevic and Meghan Vanderyt shared their stories.

Originally from Newfoundland, Stephen is from a family affected by a dominant form of retinitis pigmentosa (RP). Now in his final year of law school, Stephen will clerk for Justice Cromwell at the Supreme Court of Canada next year.

Jessica was diagnosed with Stargardt disease at the age of six. She’s looking forward to training with her first guide dog this spring.

Meghan was diagnosed with RP at the age of 11. Since then, Meghan and her family have raised over $40,000 for vision research through our Ride for Sight fundraising event.

Both Jessica and Meghan are in their final year of high school and plan to attend college to study social work in the fall.

During the discussion, people often nodded their heads in agreement. Those of us living with vision loss could relate to the stories shared by Stephen, Jessica, and Meghan. Common themes emerged: we all agreed that we ‘hate’ garbage day, revolving doors, and 3D movies! More serious commonalities also surfaced: we all struggle with the decision to use adaptive devices, especially white canes. Our shins are battered from running into things, but sometimes mean comments about our vision loss are more hurtful than bruises.

Meghan said her high school experience “probably would be easier if I wasn’t visually impaired but there really isn’t anything I can do but cope and tell people about it.”

Being partially sighted is hard for people to understand. Meghan knows this all too well. She used to use her hot pink ‘white’ cane at school but stopped.

“I would walk down the hall and someone would say ‘that girl’s not blind’ and I just wanted to turn around and say: ‘blind not deaf. I can hear what you’re saying about me and it hurts my feelings.”

“I can’t say if it’s harder to trip over things or have kids make fun of you in high school. It’s a hard toss up,” shared Meghan.

Jessica agreed, “Being a teenager with a disability – it’s really hard,” she said. “It’s hard to not care what other people think, but just keep your head up high and keep going,” she advised. “It’s important to appreciate what you have, not dwell on what you don’t, and know you’re not going through this alone.”

All the speakers recognized the value of sharing experiences with each other. “It’s validating and provides a lot of comfort to know there are other people struggling with the same sort of questions and coming to the same realizations,” said Stephen.

Thanks to RBC Foundation’s support, we will continue to break the silence. Our Vision Quest Youth Spaces last year were a great start and they’ll be part of Vision Quest 2013 in Vancouver, Ottawa and London. Let’s continue the conversation. If you’re a youth 12-29 years old living with vision loss, connect with us on Facebook and Twitter or email info@ffb.ca and share your story. Get involved in one of our fundraising events, or organize your own. Turn your hope – and your fears, your frustrations, your anger – into action.