September 28, 2020

 

BY JESSICA REDIKER

This is the fourth in a five-part series on visual impairment and what it is like for the people who live with it.

When Ethan Warren asked me if it was possible for a visually impaired person to go to college, it was my great pleasure to tell him yes.
From the moment he was born, Ethan’s life has been one step at a time. The first step was identifying that something was different about him.
“The next day (after Ethan was born) we found out that something was wrong with his eyes. He didn’t open them. My husband would walk around and he saw premature babies with wide open eyes so he was concerned. The pediatrician saw his eyes and things just went nuts from there,” said Ethan’s mother, Leanne.
A spinal tap, MRI and a CT scan later, Ethan was diagnosed with both coloboma (a hole in one of the eye’s structures) and micropthalmia (literally meaning small eye) and there was nothing that could be done about it.
Nine years later, Ethan’s family has found their normal.
In the basement of their charming house in Elmira, is a long table with small chairs around it, workbooks sprawled across the surface and a Braille typewriter on one corner. This is the classroom setting from which Leanne home-schools her five children.
Ethan is completely blind in his left eye and has very limited vision in his right, but he has learned to read and write at a similar pace to those with full vision by using his fingers.
Shortly after Ethan was born, the Warren family received phone calls from the Canadian National Institute for the Blind (CNIB) who offered them support and told them something they couldn’t believe.
“Your son will be able to do everything.”
One of the most important skills Ethan learned was Braille. Though it was a challenge to learn at first, he has since been taught other variations of the tactile writing system such as math Braille and music Braille which are both based around the same six-dot cells.
After a quick look at his spelling book it is clear that he has an aptitude for writing. Rows of bumps dot a white page and a yellow sticker decorates the top right corner.
“I got 100 per cent,” he said of the spelling test he took that morning, beaming with pride. But writing isn’t this nine-year-old’s passion.
“I like dreaming of what to write but I don’t like the writing itself,” he said. “I want to major in biology.”
He also wants to travel the world and try things he didn’t think were possible – something that he’s already been doing with the help of some local services.
One of the experiences Ethan has had recently is learning to ski at Chicopee Ski Club as part of Waterloo Region’s Track 3 Ski School that offers lessons and equipment rental to young people with various disabilities.
While learning to ski, students are harnessed to an instructor for safety, but eventually learn to hit the slopes without physical assistance.
“I can go down Tenderfoot by myself,” said Ethan, who in my entire interview never once said “I can’t.”
Anything is possible in his limitless imagination and with all of the technology and services that are accessible to him, his mother agrees that the sky is the limit.
“It’s so easy to have a child in this situation in this day and age because there’s so much available,” she said, adding these services have created a great social opportunity for her son.
For the last five years, Ethan has gone to CNIB’s summer day camp for visually impaired and blind children where he has had a lot of hands-on and interpersonal experiences. This is something that he and his mother agree is important.
“At camp I feel more like I fit in. One time we even had a soccer game. I think I’m better at soccer when I have an equal match,” he said. Even though he knows he is different in some ways from other children, including his fully-sighted siblings, it doesn’t bother him much.
“I don’t have a fascination with sports. I prefer games like Uno.”
Whether it’s because of his condition or it’s simply in his nature, Ethan is more interested in learning things and spends a lot of time reading books using his Intel Reader.
“This is my office,” he said as he walked me over to see his reader, a speech-to-text device that captures an image of printed text and reads it aloud.
His office also features a Braille printer to print documents from the computer and a MacBook Pro that he is currently learning to use.
As Ethan gets older he will learn to use more devices that make everyday living easier and learn new ways to describe how his mind-vision connection works.
For now he explains that he visualizes things based on what information he has gathered about them.
“When I was younger, before I ever flew, I used to think airplanes were something very different from what they are. They were these boxes that would just fly around. The first time I stepped on a plane I realized I was very wrong.”
Although the images Ethan sees in his mind may not be accurate, his mother says it doesn’t bother him.
“For the most part he accepts it. Just the other day he said, ‘I can’t imagine seeing things. If I could see things it would ruin it.’”