Why I can’t look you in the eye

Normally, I don’t consciously remember. But when strangers, usually men, approach me on the streets, I notice. Sometimes the encounters happen while travelling between buildings, but most often they occur on the corners, waiting for the lights to change, in that split-second between red and green. Their sudden interest in my life strikes me as uncanny, uncomfortable. They turn and tell me when I can cross, as if I need permission to walk around the city I grew up in. I smile, nod. When I remember, I look them in the eye. Except, I never do.

To be honest, I never will.

Dr. Mahadeo Sukhai researches new compounds for leukemia treatments in Toronto. He has completed two post-doctoral fellowships through the University of Toronto. At age 32, he’s been working in the field longer than most – he enrolled at the University of Toronto when he was 15.

He estimates only one other experimental biologist exists in Canada like him with his educational level. By that, he means he believes there are only two experimental biologists with visual impairments.

Like me, Sukhai can’t keep his eyes straight. Nystagmus ensures his eyeballs move around constantly, making it difficult to focus on objects for long periods of time, in this case, a few seconds.

“I don’t make eye contact, which apparently in North American society really screws with people,” Sukhai, whose family emigrated from Guyana when he was 10, explains. “I personally don’t care, but it’s one of those things where, everybody else makes eye contact, so if you don’t, it looks like you’re lying or something.”

Shortly after Sukhai turned one, the lenses in his eyes were removed. He received no implants; the technology didn’t exist then. He was born with cataracts, something most people in developed countries don’t experience until they become seniors. So while enrolling at the U of T as a teenager may seem shocking, he’s been living with a reality many don’t encounter until much later in life – if ever. This reality didn’t become truly apparent to him until he entered post-secondary education. Even then, it happened slowly. While he received some accommodations during his undergraduate degree – large print materials when available, the opportunity to take extra time on exams, volunteer note-takers – he didn’t get involved in accessibility issues until graduate school, also at the U of T. He spent six years on the board of directors for the National Educational Association of Disabled Students (NEADS) and now is a Senior Advisor of Governance and Leadership Development for the consumer-organization. But he doesn’t truly consider himself part of the disabled community.

“Do I consider myself disabled?” he asks. “Yes. Do I consider myself being bound by it? No. Do I consider myself being owned by it? No. Do I consider myself being defined by it? No.”

When this article goes to print, I will be in my final week of classes at Wilfrid Laurier University. I was supposed to graduate last year, but I switched programs at the end of first year, and after one semester taking six classes instead of five, decided to stretch my degree longer.

I like to think I’ve been running ahead of my cohort my whole life, and now am letting everyone else catch up. On October 26, 1988, I joined a growing Canadian statistic – the number of children born prematurely. Since the mid-1980s, this number has increased by 25 per cent. I was due in January 1989, but because of medical complications, entered the world a few days prior to Halloween at 1 pound 12 ½ ounces.

According to a 2010 report, preterm birth is the leading cause of neonatal death worldwide. Over 1 million preterm babies die annually. While many of these births happen in less-developed nations, North American rates are rising, often due to the age of mothers or use of fertility treatments.

Premature birth can mean many things. For me, it meant a diagnosis of Retinopathy of Prematurity (ROP). No one theory, as I understand them, fully explains how this condition occurs. Individual cases vary greatly. Like Sukhai, I have 20/200 vision. What a person with 20/20 vision can see from 200 feet away, I see from 20 feet away. And even then, I’ll miss details. I prefer large print and will hold regular-type items closer. Facial recognition, mostly, eludes me. Registered as legally blind, I sometimes use a smaller white cane, an identification cane, when I travel. I don’t always use it around campus, baffling friends and strangers alike. I’ve been told my use, or non-use, of my cane has, unbeknownst to me, been discussed by some downtown pedestrians.

I sit at the front of classrooms, preferably in the centre, so I have a better chance of seeing mostly inaccessible PowerPoint Presentations. I receive textbooks in alternative formats and extra time for exams I write on a computer in a separate room. Often, this means I’ve attended class largely alone – most people don’t sit in the front, and rarely have I had anyone move to join me there.

But had my mother and I not – almost literally – run into Deirdre Boyle on a spring 2006 tour, I may have never registered with Accessible Learning.

Like Sukhai, I didn’t consider myself having a disability, largely because my parents didn’t, and I don’t know any different.

“You just do,” Sukhai says as we discuss various approaches to disability identity and politics. “You do because you’ve figured out coping mechanisms and ways to handle it, no matter how long you’ve been doing it. You just do it. It is just like hair colour. It is a characteristic. It’s not something to be fussed about.”

But for many, it is, especially in post-secondary education. (Although as Frank Smith, National Coordinator of NEADS points out, many accommodations, particularly those involving technology cost little or nothing.) Choosing to attend university meant choosing to be marked as a student with a disability. In some cases, this meant financial aid – from a variety of sources and people – for which I’m grateful. More often though, it meant hearing, “I’m sorry. I didn’t know you were blind. You don’t look like it.”

On one hand, I understand the sentiment. The vast majority of people in Canada with visual impairments are seniors – the leading four causes of visual impairment and blindness are related to increasing age, not early birth. The number of Canadians developing irreversible vision loss by age 65 equals the number of women with breast cancer.

According to Smith, who has worked with NEADS since it began almost 25 years ago, there seems to be more students identifying as having disabilities, most of them learning disabilities. According to government statistics, over half of children with disabilities will attend post-secondary education, and are more likely to enroll in college or university than trade programs.

On June 22, I hope to take one final walk as a Laurier student: across the stage at the Sanderson Centre to receive my diploma. While English seems like a logical degree for someone with a visual impairment, it was a slightly ironic choice: it always requires some accommodation, simple as it may be. Studying and practicing journalism and now possibly seeking employment in that field, continues to present unique challenges. As Sukhai reminded me, not everyone is expected to succeed at university. If my GPA and over three years writing for this publication indicate anything, I did.

The light has changed to green, and everyone’s ready to go. This time, though, no strangers tell me I can cross. Instead, I realize that when it comes to employment, like education, many have already decided I can’t. And if I do, I’m not guaranteed the same destination.

But when called, I will cross that stage, most likely not in a straight line, and take my diploma with confidence. I will likely not look anyone directly in the eye, although I’ll try.

And when I shake the hand of my first post-university employer, I will do my best to look them in the eye. They will likely ask why I can’t and I will give answers and jokes and stories.

And then, we will work.

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