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Study of an eye by Johann Kaspar Lavater c.1794

PUBLIC DOMAIN

Graham Isador is a writer and photographer in Toronto.

I have a progressive eye disease called keratoconus. Since I was a teenager, my eyesight has slowly been deteriorating. As I’ve lost my vision, I’ve lost other things too. These things were small at first. Letters on a chalkboard, menus at fast-food restaurants, an undefeated streak in Mario Kart. But as the disease worsened, the losses got harder to ignore. By my late teens, I couldn’t pass the vision test for my driver’s license. The glare from bright lights caused a sharp pain in my temple. Spending too much time on screens made me light-headed. That last symptom has been a particular problem, because like a lot of young people, basically everything I do to make money requires me to spend hours glued to my computer or phone.

Keratoconus causes the shape of your cornea to distort. My eyesight can’t be corrected with glasses. Laser eye surgery isn’t an option either. There are hard-style contacts I could wear but because keratoconus causes chronically dry eyes this can be painful, like having a bit of sand caught perpetually behind your eyelid. The cost of the lenses can add up to thousands of dollars a piece, with the prescription changing each time the disease progresses. Like dentistry, vision loss isn’t covered by Canada’s universal health care. Which means for the time being my best option is just kind of dealing with my eyesight as best I can.

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For a long time, I didn’t tell anyone about my vision loss. Because I could still function, I didn’t think I had any right to complain. I also didn’t want to take up space from folks with more impactful impairments. I thought it would be akin to stolen valour, like the losers who wear military uniforms and pretend to be veterans. But as the disease has progressed there are some things that I’m now incapable of doing because of how I see. Admitting that to myself has been hard. Surprisingly, admitting it to others has been even harder.

People don’t know I’m losing my sight unless I tell them about it. Because of this, problems owing to my vision – misspelling words in e-mails, the inability to recognize people from a distance, not being able to read subtitles, not being able to follow sports on television, even the way my face looks during Zoom calls – are all attributed to a snooty personality or general carelessness rather than a disability. My buddy Tom, who over the years has apologized and explained my situation to dozens of mutual friends and acquaintances, describes it like this: People don’t think I’m going blind. They think I’m an ass.

Because of this, I’ve started talking about my vision loss more. I let new co-workers know. I occasionally chat about it on social media. When there used to be dinner parties, I’d talk about it there too. But because there are no stereotypical indicators of the disease – I don’t use a cane, wear sunglasses indoors, or have a support animal – people tend to forget that it’s a problem at all. This means having to advocate for myself and remind people of accessibility accommodations every couple of weeks or so.

Pushing to get equal treatment can feel both exhausting and embarrassing. I feel like a bother, like I should be able to suck it up and figure things out on my own. But if I don’t speak up about my eyesight, then nothing changes. It was only because of my own situation that I realized just how inaccessible a lot of things are in everyday life. There is tons of real work that goes into remedying that. Despite sight loss affecting more than 1.5 million Canadians, awareness around the issue is still relatively small. You’ve got to speak up if you want to be heard. Not that doing so is easy.

Sometimes when I tell people about my vision loss, they don’t believe me. They think I’m making it up. That notion is always baffling. It isn’t like I get clout for poor eyesight. It’s not like a sexy thing. Imagine being on a date and trying to seduce someone with your progressive eye disease. “Darling, I don’t mean to brag but … I don’t see good.” Wouldn’t work. But because people have such a narrow perspective on what constitutes a disability, it’s easier for them to dismiss people’s experiences entirely. And that dismissal happens all of the time.

Dealing with those comments can be a challenge. Recently I had a conversation with colleague and disability advocate “Blind Gamer Steve Saylor about dealing with other people’s reactions to your disability. Steve has popular YouTube and Switch channels where he plays games and comments on accessibility. As the channel’s popularity has grown, he’s had to deal with people claiming he “isn’t really blind” because he isn’t completely sightless. Steve – who is much more patient than I am – views the comments as a teachable moment.

“If a YouTube Video blows up or I get rated on Twitch, people think I’m lying about my sight because they don’t understand the concept of a blind gamer‚” he told me recently. “Video games are a visual medium, so, to them, blind people shouldn’t be able to play. I have to explain and educate people on what it means. To be honest, most of the time it doesn’t work – people love to troll – but occasionally you can actually get through to people and they actually learn something, which is really rewarding.” He hopes that his content can bring awareness to the spectrum of blindness and each person’s unique experiences with their disability. His channel is a great example of something I struggle to articulate: Just because I may need to do some things differently because of my vision – or need a bit of help doing them – doesn’t mean I can’t do those things at all. Vision loss doesn’t look the same in all people. The idea of hidden disability can be a challenging concept to understand, but by continuing to push forward conversations and normalize access, hopefully in the future we won’t have to advocate for ourselves so hard. Because lately, keeping up that kind of advocacy has made me really tired. I’m sick of having to fight for myself to get something that should be a given.

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