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There’s no such thing as “normal”

11 December 2013 No Comment

Half-reclined on a black leather couch with his head propped in one hand, Mat Smith exudes an openness that is rare for a man who generally prefers the intimate company of his music. Dressed in a black sweater and khaki pants, he sports an affable smile whilst pulling a blanket- adorned with a teddy bear wearing a Santa hat- over himself to keep warm. The gas fireplace across from him is warming the room, but too slowly for his immediate liking.

By all accounts, Mat Smith looks like the average 23-year-old; mousy brown hair falling just above clear blue eyes that match the friendliness of his smile, fair, unblemished skin and no obvious protrusions. When he speaks, his voice carries a distinctly high, almost feminine quality- there is nothing to suggest that he can bounce between RENT‘s “Seasons of Love”, holding a high c perfectly, and then switch over to a surprisingly natural baritone that rumbles deep in his chest while singing “My Grown Up Christmas List”Then again, there’s nothing to suggest he’s legally blind, either.

Society has painted a stereotypical picture of the blind for people to go on; obvious glasses that obscure the eyes, a long walking stick consistently tapping at things, struggling with mobility and orientation. Mat’s glasses are dark red, and unobtrusive enough that, if you didn’t know he was blind, you would think he was trying to pull off some sort of fashion trend.

In fact, Mat laughs at the media’s stereotypical portrayal of blind people as though it is a joke he has grown accustomed to- and is fine with- hearing. “That might be how some people are, but not me.”

Mat was born with achromatopsia, a genetic vision disorder that can mess with the delicate but highly-complex system of rods and cones in the human eye. Mat was born with no cones in his maculae- the normal human eye contains about six billion- the simplest form of explanation is that he sees too much light, since his eyes don’t reflect it the way they should. People with achromatopsia generally do not have good detail vision, instead, seeing with tunnel-vision that lacks the capacity to see most, if not all, colours.

“I can see bright colours, and some really dark ones. I think it just depends on the light and shadows contrast.” Mat mentions thoughtfully. “I can see things if they stand out, like black or white… my favourite colours are blue and yellow, because I can almost always see those.” Still, in some environments, Mat admits that when he opens his eyes, all he can see is black and white. “Don’t get me wrong, I can see shadows and outlines and everything… there’s just no colour.” Even the colours he can see, he mixes up- purple and red have the same sort of pigmentation, grey looks like blue.
As for the issue of his tunnel vision, Mat is taking a defiant stance against years and years of medical research. Talking about it after the fact makes him raise his chin, a frown quirking his lips down. “My optometrist told me I’d never have any peripheral vision, and I accepted that… but lately I’ve started noticing I can see things from the sides of my eyes more and more. When I went to get checked out, they said I had some peripheral vision… I’m wondering if I had it all along, and just didn’t notice because they said it was impossible.”

Impossible. He is no stranger to the word, the concept. It is something every parent hopes for when they bring home their child from the hospital- the impossibility of disability, of a visible mark that something could be wrong.

Still, with achromatopsia in the family’s gene pool, Mat’s parents knew he was at risk to inherit. Achromatopsia is passed down through the mother- usually to her son. It is rare that girls inherit the condition, but not unheard of. Unlike other forms of blindness, achromatopsia can take awhile to diagnose- Mat’s parents didn’t hear the official word from a doctor until he was about fifteen months old (when his tests could be verified as accurate)- though they had already prepared themselves for the diagnosis. When Mat was still an infant, anytime he was taken outside, he would scream and cry; blocking his face with all of the strength in his tiny arms to shield it from a sun that burned his eyes. When he learned to walk, he bumped into things that he should have seen- particularly doors, though screened doors, with their transparent trickery, confused him most. Screen doors are still a bit hard to see, but he’s careful.

Still, even though Mat’s parents were aware of his disability, the boy himself didn’t notice until he went to kindergarten. “I started out wearing clear glasses when I was younger… everything was so bright, and I couldn’t make out anything. I had to squint all the time and, you know, I’m seeing all these other kids, and their eyes are open, they’re not walking into things, they’re able to actually do things… and then there’s me. I was actually shuffling, because I couldn’t see where I was going and I think that’s when I kind of knew. You know, for a kid that’s in kindergarten, it’s kind of like, ‘oh, something’s wrong.’”

People eventually started teasing Mat for his vision impairment- a fact he blames on his own truthfulness. “I remember being called Blind Boy in school, and Blind Mat sometimes. I think I was too honest sometimes, because people would ask me what was wrong with me, and I’d tell them. Before that, I guess they just thought I was wearing sunglasses inside, trying to be cool.”

While Blind Boy has phased out, “Blind Mat” has stuck around. He has experienced discrimination everywhere, from organized sports- when he was fifteen, he was part of the voluntary Glanbrook Soccer League. His teammates were great, and really understanding, but the coach was unhappy with having a visually-impaired player. Eventually, he called Mat’s mother and tried to convince her to enroll him in the peewee league with little kids- to the workplace. “There was this guy at my old job at the golf course… we had to work together every day, and he’d call me Blind Mat even if I was there with him. I was the only Mat who worked there… he even told me the boss’s father considered me a liability because of my eyes.”

Mat started looking for an escape from life as early as 13, enrolling in the Theatre Aquarius’s summer program and then going on to the Hamilton School of Music, where he discovered his passion for singing. He’d always lost himself in the music, but up until he was 13, had no idea that he was harbouring a vocal gift.

Unfortunately, the arts led to their fair share of being tormented and teased as well. “When I was in high school, there was this guy… he’s actually very nice now, and he’s apologized for the way he used to be, but we used to be in the drama department together. If we had to do a show, he’d say things behind my back to other people like ‘Oh, he’s going to fall off the stage because he can’t see.’ Or, ‘He’s going to bump into something on-stage and ruin the whole set.’ Just ignorant things like that. I think it was just jealousy.”

Thanks to his vision impairment, Mat was granted an educational assistant- an EA- in high school. One of the EAs who worked with him, Mary LeDuc, is awed by the man he has become.

“I remember Mat being this shy little kid. He was quiet, really liked musicals… it’s wonderful to see him doing so well, and seeing him know that he can do anything. I guess university really helped him, living away from home and all that.”

Indeed, university was a game-changer. Mat went to the University of Guelph and then to McMaster to obtain a Bachelor of Arts in History. He enjoyed the university experience because it allowed him to grow and live independently- and by living independently, of course, he means without his parents tracking his every move. This meant that Mat, who was previously sweet and shy, had to learn to grow a backbone. When his room-mate in first-year residence, Jeff, looted through his things at four in the morning and then taunted Mat by saying he was a weird freak who had sex with his sister, Mat threatened to get the campus police involved. When Jeff brought girls home and had sex with them in Mat’s bed, Mat took a stand and said if it happened again, Jeff would be buying him a brand-new set of sheets. He refused to transfer dorms and give Jeff the satisfaction of seeing him back down.

But steeling himself against bullies wasn’t the extent of his post-secondary experience. Just like a vast majority of kids on their own for the first time- it’s ridiculous, he says, that people with disabilities aren’t seen as “normal”- he was drawn to the party scene.

“I got drunk for the first time in university, I had weed… I even tried ecstasy. I don’t remember much about that, people told me I was really happy. I blacked out, though. When I woke up the next morning, my head was pounding. I felt really sick. Never again.”

While his university experience took him down paths he never thought he’d travel, it also brought with it stress, anxiety and depression. At Guelph, his anxiety was so bad, he started self-mutilating; cutting himself anywhere, with anything he could find. The first time, he cut himself with a kitchen knife.

“I just got to this point where I was so stressed and angry and unsure… and when I cut myself, I was kind of zoned out. Like, I was there, but not really there. I’d come back into myself and there would be cuts on my arms or a cut on my face and it would almost be like, ‘How did that get there?’ It was just my escape for a little while, when I was at Guelph. My room-mates tried to stage an intervention, which was very sweet, but they thought I’d become violent and cut them.”

A change of scenery and psychiatric therapy did wonders for Mat. He transferred to McMaster and breezed through that- keeping his music close, as well as discovering a newfound love for philosophy-now he’s in records and information management at Mohawk he’s thinking of going back to McMaster to obtain more credits, this time in criminology.

“I think I’d like to work in a law firm, you know, sorting out their archives and stuff. It’s so hard to find a job these days,” Mat is frank as ever, laughing about the lack of stable employment options. He’s currently holding down two jobs- one as a homework helper at the Kennilworth Library, and the other as a vocal coach at the Norman Pinky Lewis Recreation Centre in Hamilton.

When Mat talks about the future, he refuses to be daunted by the uncertainty. He knows there will be obstacles to overcome- he’s visiting an optometrist in April to see if his peripheral vision is good enough to drive- but at 23 years of age, nothing about his disability frightens him. “I accepted that I was weird a long time ago… what is normal, anyway? There’s no such thing as normal.”

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