“Go Play With Your Friends!”

“Meagan, what are you doing over here by yourself?”
The daycare worker stood over three-year-old me as I crouched by a wall, well away from the groups of laughing children. I remember holding a toy giraffe (which I was pretending was a pony), and babbling happily to myself, weaving some far-fetched tale or other to while the hours away. I raised my head reluctantly but obediently; I was loath to interrupt my highly-enjoyable game, but I was a relatively respectful child.
She waited.
“Well? What are you doing?”
“Playing.”
“Put that down and go play with your friends.”
It’s astounding, really, the level of clarity this memory still holds for me. My head is full of fuzzy childhood memories, but this one stands out. If I concentrate, I can still feel the cynical amusement her comment had provoked—an amusement that was distinctly unlike what a child ought to feel.
“I don’t have any friends.”
How could she not know this? Was she not paying attention when kids turned their backs as I approached? Did she miss the very public incident when a toy crate was placed directly in my path in the hopes that I’d trip?
“Yes you do.”
“No, I don’t.”
“Well, go make some then.”
As she walked away, my child self felt absolutely nothing but relief: I could get back to my giraffe—ahem, pony—without further annoyances.
What I find remarkable about this memory is not the underlying theme of social isolation and bullying. Bullying had tapered off almost to nothing when I went to grade school, I was extraordinarily lucky, but daycare was somewhat different. I faced relatively little direct confrontation—I was certainly never abused or put in real danger—but social exclusion was at its height. No, what I always dwell upon is how very unaffected I was by all of it. Kids are all supposed to crave a peer group, but for whatever reason my rejected social overtures didn’t phase me. I didn’t try very hard, and once I realized it was basically futile, I retreated to the safety and endless entertainment that could be found inside my own head. I was aware on some level that this made me different, but I simply don’t remember being bothered in any way by it.
I was not a socially starved child, generally speaking. I was forever pestering my elder sister to play with me, enjoyed the company of adults immensely, and had a huge, welcoming extended family to keep me company during gatherings. If I had the opportunity to play one-on-one with accepting kids my own age, I took it quite contentedly.
Despite this, my introversion seemed to be a source of ongoing anxiety for the adults in my life. Daycare workers, teachers, consultants, and all manner of others concerned themselves with my social development, no doubt worried that a disabled child left to her own devices would morph into a stunted mess. Their fears weren’t entirely unfounded, and my isolation did facilitate certain quirks it took me a bit too long to eliminate, but my intelligence, contentment, and overall growth didn’t feel impeded by my apparently-tragic lack of friends. At least, that’s how I tend to view it.
Frequently labeled antisocial and stubborn, I noticed that my personal preferences were considered partially or wholly irrelevant. This is true for many children, I think, especially when they grow up surrounded by people who fear they’ll turn out wrong, somehow. I don’t know that any adult stopped to consider that maybe, just maybe, Meagan was at peace with not having many friends, and that she’d make them when she was ready. I’m not sure anyone recognized that introversion and antisocial behaviour are worlds apart.
As I grew older, I did begin to amass a very small, very selective group of friends. I didn’t always choose adults’ perceptions of ideal candidates—that is, I did not necessarily gravitate toward popular kids. In fact, I tended to avoid them, and they likewise avoided me unless they thought I’d give them the answers to the homework that had just been assigned. (My studiousness was attractive to just about everyone in my classes over the years, meaning everyone wanted to sit next to me inside but scattered at recess time.) The steady friends I did have were a bit like me: introverted, slightly eccentric, and entirely content with being both. Throughout my childhood, all the way up to middle school, the refrain continued: play with your friends. Be more social. Don’t just stand by that wall all the time. Go play with these girls and those guys and that group over there.
Sometimes, the concern, which I know to be benign and not entirely misguided, got a little out of hand. Fellow students were ordered to play with me (please never do this to any child), and didn’t always hide their resentment over it. Others would allow me into their group briefly, but were just as happy as I was to see me go. Probably, if I’d tried harder, been chattier, been more charming, I’d have made progress, but it all came down to the inescapable facts: they didn’t really want me around, and I was in no mood to waste energy trying to persuade them otherwise.
Don’t get me wrong: I nursed my moments of loneliness, especially as a teenager. Sometimes it seemed as though having more friends would be an express line to a better life, within the confines of school, anyway. When I became a bit more popular in middle school and my social group got larger, I welcomed opportunities to experience new people and activities. When I got to university and was totally alone again, I felt hollow and far more desolate than I’d ever felt as an excluded child.
On the whole, however, I don’t believe my personal growth was much improved by the constant commands to be more outgoing. The social butterfly wings don’t suit me, and they never really have. I applaud the efforts of those who cared for me; I know they were aware of the risks inherent in an isolated, sheltered child, and I see the effects of this isolation in other blind people. Some of them can’t shake a pronounced awkwardness, even as an adult, and I’m grateful to have navigated that particular minefield fairly successfully. I owe much of that to the efforts of the adults closest to me, who were just trying to make me into the best person I could be.
These things aside, I believe my intense introversion, so often judged and found wanting, shielded me from so much of the drama and misery that are youth’s trademark. Other kids were worrying endlessly about who was out and who was in, but I was busy reading yet another book. Other children at daycare were fighting over toys while I sat safely in a corner, knowing my giraffe-pony was mine, all mine. My ambivalence toward my peers wasn’t always an asset, and it definitely got me into trouble a time or two, but it also insulated me from a lot of pain and self-doubt I really didn’t need. Childhood and teenage years are difficult for anyone, but I had separate challenges that meant I would have had precious little time to waste on being lonely anyway. I was way too concerned with a mental illness I did not understand and a disability I didn’t always know how to deal with to cry my eyes out over whether the girls on the tarmac would let me skip rope with them.
Today, I’m still an unapologetic introvert, though with far more friends and a much richer social life. I’m no longer content with total exclusion, and I spend way too much time these days agonizing over things I would have thought silly and worthless as a child. I like my life, and I like who I’ve become.
Still, once in awhile I appeal to that three-year-old I once was. I ask her to lend me her shamelessness and her practicality. I ask her to remind me that I can be my own best friend when the need arises, and that what other people think, well, it doesn’t always have to matter.
Don’t worry, introverts. You’re okay.

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?