September 26, 2020

BY JESSICA REDIKER

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

Have you ever tried to cross a six-lane intersection at rush hour using only the sound of the traffic to guide you safely to the other side of the street? Chances are you can only imagine how difficult this would be, but for people who have experienced full or partial vision loss, it is a reality.

Everyday life becomes full of new obstacles and challenges that fully sighted people cannot experience and yet they are the people who make decisions about accessibility.

Buses that call out the upcoming stops and auditory signals at some crosswalks are a few of the innovations that have been implemented here and there, but how does someone with low vision make it through the roundabouts the city keeps building?

We see the world through our own lens, but how often do we obstruct our vision and try to navigate our kitchen, our school or our city? It is easy to paint the issue of vision black and white, but Ruth Millard, volunteer services co-ordinator for CNIB’s Waterloo office explains that vision is a spectrum, not a one-or-the-other scenario.

“Everybody’s situation is different,” she said.

There is no rule that dictates that a person who uses a white cane is blind and a person without one has full vision, and yet this is a common belief.

The term “visual impairment” covers the entire spectrum from slightly blurred vision to complete darkness. From the first moments of noticeable decreased vision and throughout the process of losing sight, each person’s experiences are unique.

CNIB, a non-profit organization formerly known as the Canadian Institute for the Blind, aims to help individuals see beyond their vision loss by offering information, support services and assistive devices to Canadians who are blind or partially sighted as well as the family and friends of those individuals.

CNIB helps clients cope with the distressing emotional impact of vision loss, as well as orientation and mobility in their homes and outside to help them find new ways to complete everyday tasks from reading to shopping to cooking dinner.

Even before a person loses his or her vision, CNIB keeps education and prevention at the forefront.

“Do we all wear sunglasses when it’s bright outside? Do we all eat the proper foods? Do we all look after ourselves?” asked Millard, explaining that people do not look after their eyes, which can lead to any of the four most common eye diseases.

Age-related macular degeneration (AMD,) cataracts, diabetic retinopathy and glaucoma are all very different diseases that affect vision in different ways.

Diabetic retinopathy appears as dark splotches across a person’s field of vision, while cataracts result in a blurred field of vision. Glaucoma creates a dark sort of vignette in the peripheral view and AMD creates a grey blur over the central field of vision leaving peripheral vision clear or just blurred.

Even after being diagnosed with one specific eye disease, vision loss is a completely personal issue.

Jessica Milicevic, a volunteer and client at CNIB in Waterloo, was diagnosed with Stargardt’s disease, a type of juvenile AMD, when she was six years old.

“I can’t see any detail of anything because central vision is your detailed vision. I can’t see your face, I can’t see my face when I look in the mirror but I can see the outline of things. I can see objects but I could pass by my own sister at school and I wouldn’t know it was her,” Milicevic said.

Milicevic has had years to learn to fit in and navigate her world, but it hasn’t always been easy to accept her disease and become comfortable with herself and the equipment she uses.

“People think it’s so cool that I had a computer (in class) but there’s a difference between needing to have one and wanting one. If I could I would have just had a pencil and paper like everyone else,” she said.

When she’s using her computer, a program called ZoomText magnifies whatever is on her screen to a viewable size. In Milicevic’s case, it’s 12x, or four letters on the screen at one time.

There are magnifiers, Braille playing cards, talking watches, large-print calculators and clocks, money-readers and adhesive dots to stick on as reference points, but it isn’t the adaptive equipment that makes Milicevic feel different from other people, it’s the way she is treated when people notice her using it.

“Sometimes when I’m using my cane I feel like there’s a bubble around me because people are either very helpful or they don’t talk to me. They don’t know what to say because they’re worried about offending me,” she said, but her confidence is rarely shaken.

“It’s not easy to be comfortable with using the cane, it’s not easy to stand out from everyone. It makes you nervous and uncomfortable but I’m completely fine with it now and I don’t care what anyone thinks,” she said. “I remember one time I went shopping with my friends and I was buying a wallet, and the sales associate was talking to my sister’s friends the whole time and I thought ‘OK, I’m not dumb. You can talk to me considering I’m the one who’s buying it.”

Milicevic believes that stigma and misconception play a large role in the social detachment attached to disabilities.

“They think ‘She’s blind so maybe she has other disabilities. Maybe she can’t hear me or she has a mental disability,” she said, adding that while there is a wrong way to treat her differently, there is also a right way.

When starting up conversation, people need to remember to introduce themselves to people with low vision so they know who is speaking and to announce when they are walking away instead of leaving the person there to wonder if they’ve left.

“You have your days when you get upset about it, but I don’t have that very often anymore. You do have to treat us differently in terms of telling us where things are sometimes, but we’re still humans.”

Regardless of the state of someone’s vision, Milicevic encourages other people to ask questions and not shy away from helping her around even though she is perfectly capable on her own. Above all else she encourages people to view someone with vision loss the same way you would view anyone else.

“We don’t want people’s pity.”