Goodbye, Colourful World

I usually identify as blind because it is easier than trying to explain what I can and can’t see, but the label isn’t entirely accurate. Technically, I do have a little vision, though not enough to recognize faces or read print of any size. LCA is slowly depleting the tiny amount of vision I was blessed with at birth, and I’m finally beginning to care.

As a child, one of my favourite activities was visiting the greenhouse on a warm June day, basking in the profusion of mellow blues, insistent reds and cheery yellows all around me. Many colours were beyond my visual scope even then, but as a child the brightest colours were still easy to see, and I relished them. I appreciated them most where I found them in nature: I discovered them in flowers, in crushed autumn leaves, and even in fruit bowls. I became confused when trying to see the soft green of an apple, but had no difficulty appreciating garish carrots and sunny lemons. While I didn’t exactly understand beauty, I did understand the vibrancy and immediacy of colour, and I remained fascinated for many years.

As my vision is slowly eaten away, however, my cones (colour-sensitive cells of the eye) are deteriorating. My peripheral vision is all I ever really had to begin with, and as that disappears, my ability to distinguish colours is fading with it. Where once I could easily separate bright yellow tank tops from pale pink ones from white ones, I now struggle. If I tilt my head just so, and squint my eyes just so, and say the magic incantation just so, I can sometimes tell. Other times, however, no amount of adjustments of lighting or head position will quite do the trick, and I’m left just a little unsure. My world is turning, ever so gradually, into one of shades. I no longer notice bright colours unless they’re called to my attention. I could be gazing straight at a bright red apple, but it looks black until I concentrate. Only then does the red hue show itself. Mostly, I’m okay with that. … Mostly.

Occasionally, I allow a little sadness to steal over me. It’s not just colour I’m losing, either. Just this evening, I was looking down at my parents’ black dog. He was sprawled on the carpet, enjoying a luxurious nap, and I realized I could no longer see the entire length of his body without moving my head. My field of vision is now so narrow that I cannot even see an entire hand’s breadth without difficulty. It’s a small thing really—being able to see the length of a dog’s body is not exactly a life-saving perk. Even so, after so many years of knowing things would change but not really dealing with that knowledge, I’m suddenly forced to face it head on.

On the bright side, the loss is proceeding at a snail’s pace. It takes several years for me to detect a significant decline, so I feel quite peaceful about the whole process. My brain is learning to accept the loss little by little, and I’m learning right along with it. Since my vision was never of much practical use anyway, I’m not nearly as distressed as one might expect me to be. Certainly I’m not fantasizing about a cure or composing laments every other day.

But sometimes…I miss the flowers. I miss the ability to sort laundry without any effort at all. I miss the gentle gold of the sunrise and the fiery orange of the sunset over the trees. I don’t know if I’d call these things beautiful, exactly—it’s not beauty I was seeing—but I would call them, well, intriguing. Bit by bit, my world is becoming less vibrant.

Sure, I still have sound, and scent, and touch, and taste, and all the rest of it. No, I’m not awash in grief over the whole thing. I’ve always known it would turn out this way, and I’m thankful that I was ever able to see those flowers and those apples and those sunsets—or my version of “seeing” them, I suppose. It’s important to remember that I really had very little beyond colour to appreciate visually. Even at birth, I had but a tiny fraction of what sighted people have. But, yes, I will miss the colours.

It’s lonely, sometimes. I have a lot of totally blind friends, and they simply can’t empathize. Paradoxically, my sighted friends are even less able to do so, because they find the idea so horrifying. How could I possibly feel mild nostalgia rather than all-consuming heartbreak? I feel as though I’m not quite a real member of the blind-person club, all because I know what red looks like. I do belong, functionally speaking: I can’t read street signs or take photographs or even recognize my mother’s face. Despite the fact that my life ticks most of the “blind” boxes, I feel just a little isolated, as I sit on my living room couch and look down sadly at that dog.

It will be all right, of course. In general, I shall carry on as cheerfully as always. In general, I will not feel the need for sight or the longing for a cure. In general, I’ll continue to be a typical blind person. Every now and again, though, I’ll take a moment to bid a quick farewell to the colourful world.

Can You See Me?

A few years ago, I performed an informal little social experiment while in the grocery store: I began by walking just behind the cart (I was pushing, my sighted companion steering) with my cane out and plainly visible. After a few minutes, I folded the cane and put it in the cart so that it was out of sight. I have “normal” eyes, so I don’t look conspicuously blind; if the cane isn’t easy to see, people don’t always realize right away that I have any sort of disability at all. Since I was just pushing the cart, the blindness really wasn’t obvious. You may well ask what the point of such an experiment could be. Here is what I discovered: while my blindness was on display, as it were, I got pitying, fascinated, or outright terrified looks. Mothers instinctively pulled their children from my path, even when they were in no danger whatsoever of colliding with me. The elderly and the very young gazed at me as though I were some foreign creature they’d never seen before. It was clear that while everyone was looking at me, they weren’t seeing me, the human woman. They were seeing a blind person, and no more. When the cane was out of sight though, people either didn’t notice me at all, or (in the case of the young male population, anyway) looked at me with interest. (This is not vanity; my sighted companion was the one who told me of this!)

 

What have I learned from experiments such as these? Well, quite a few things. One is that people are inherently afraid of (or at least fascinated by) what they don’t understand. Another is that people will never be completely comfortable with difference, no matter how hard we work to encourage tolerance. A third thing is that those with disabilities are hypervisible and totally invisible at the same time. We are either the centre of attention (in a zoo-creature kind of way) or we don’t exist at all. We are either being asked to speak on behalf of all disabled people, or we’re being completely overlooked. We’re either being asked if we need help (or other more intrusive questions) or we’re being severely marginalized. Our canes, dogs, wheelchairs, cochlear implants, talking phones and computers…these all ensure that we are very visible to everyone and anyone who is curious, frightened, or hostile. Yet these things also make us totally invisible as human beings. We are not individuals. Instead, we are archetypes, or representatives, or ambassadors. If we’re not any of those things, we’re not anything at all.

 

These are general observations; do remember that. Before you indignantly point out that not all people treat us this way, please keep in mind that I’m aware of that. I am surrounded by wonderful friends, family, instructors, employers, and total strangers who treat me with dignity, respect, and courtesy. Most of the people I know think of me as an individual and not as a spectacle to be gawked at.

 

The trouble is, there are also many people who do treat me like a spectacle.

People watch me perform every little minor task, exclaiming over it and pestering me with endless questions. I am hypervisible.

People discuss me well within earshot, sometimes complimenting but often just speculating about what might be wrong with me. I’m invisible.

People stare openly at me while I enjoy a day at the mall, being careful not to actually interact with me in any way. I am hypervisible.

People confuse me with other blind people because they recognize the cane but don’t recognize my face. I am invisible.

 

My life is not a spectator sport. My identity is not simply made up of disability and the quest to overcome it. As I’ve said time and time again, there is far more to me than what I can’t do. I don’t want to be anyone’s representative. I don’t want to be “special” just because I’m the first person to take a certain course, or work at a certain organization. Many people with disabilities find themselves pioneering and paving the way (more on that in upcoming posts) but we seldom enjoy it. It’s just another reminder that we’re less an individual person and more a symbol.

 

I understand that you’re curious. I understand that you mean well (mostly). I also find that the open, discourteous way people often stare at me bothers the people who love me far more than it bothers me. Just ask my sister; she’ll tell you what she thinks of people who do that. (She has been known to smile and wave at them until they are shamed into looking away, because she’s gloriously protective. I’m very lucky.) I understand that difference will always be intriguing, and scary, and daunting. I get it. But…

 

Please don’t watch me eat. Please don’t comment on every little thing I do as though it were the most interesting thing you’ve ever seen. Please don’t observe me with an eagle’s eye, leaping to react to my every movement. Please don’t talk about me like I’m not in the room. Please don’t make fun of other people with disabilities (derisively) when I’m present…

 

Please try to see past my cane and get to know my face. Please get past the fact of my blindness and get to know me as Meagan—the professional communications student who loves cats and hates mosquitoes.

 

Can you see me?