isolation

The Settling Kind

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In may, I visited my very first escape room. I expected some hiccups, but was nonetheless excited. Escape rooms sounded like the ideal amalgamation of everything I find fun: low-key activities, free of unnecessary stimuli, packed with puzzles and bolstered by a team atmosphere. I’m not naive, and I anticipated visual challenges I’d be unable to meet, but I assumed there would be enough tasks I could manage to make the experience worthwhile. Besides, I was used to settling for a little less. It’s an art form at this point.

The escape room proved less accessible than I could have imagined. We didn’t make it through the entire sequence, so I can’t guarantee there weren’t accessible brain-teasers lurking near the end, but everything we encountered was, at minimum, partially visual. Even the logic puzzles required such complexity of description—and such perfect recall on my part—that I gave up completely. While the fully-sighted participants swarmed the claustrophobic space, ransacking shelves and deciphering tiny writing on the walls, I hung back, at loose ends. Occasionally, some sympathetic soul would try to include me, but the activity was on a tight timeline, and none of us could think of a timely and effective way to let me participate at all, let alone as fully as everyone else. Ultimately, I was of no more use to anyone than the toddlers running around our legs.

I left the room disappointed, berating myself for being so. Shouldn’t I have expected this? Shouldn’t I be used to this by now? Why did I let myself hope, anyway? I ought to know better.

When you grow up rural and disabled, disconnected from opportunities and understanding peers, you’re likely to adopt the art of settling as a survival mechanism, and quickly. If you’re unable to be at peace with missing out, you’re probably in for a war of attrition.

It wasn’t all bad: My family and friends were unfailingly accommodating, and my sister was denied many an activity because my parents worried it would exclude me. Cousins and friends modified games to make them easier for me to play, and valued my participation almost without exception or complaint.

The rest of the world wasn’t so inclusive, and I came to accept, at a very young age, that I’d better get used to the sidelines. After a few years of skipping rope on the stage while my gym class played dodgeball, or solving math equations while my classmates took swimming lessons, I even grew to prefer the fringes. It seemed safer there—more suited to my introverted, self-conscious personality. Inclusion seemed like an unreasonable burden to place on anyone, and when you grow up surrounded by nondisabled people, you tend to prioritize harmony over desire.

By the time I started university and amassed a group of disabled friends, I noticed how demanding—that’s how I viewed them then—they all seemed to be. They wanted described video and tactile museum exhibits and blind-friendly versions of mainstream sports. Their determination to participate felt foreign and frightening. I’d spent years convincing myself I was happy to spectate. A deeply-embedded combination of habit and self-protection had let me hover on the sidelines without acknowledging my own desire for a life more fully lived. All this time, I had thought myself the kind of person who hangs back, sits things out, and says no to anything that seems too fun or messy or adventuresome. With the exception of my musical performances, I’d rarely permitted myself to reach beyond my limits and ask for more. On the cusp of adulthood, I was forced to accept that I had contorted myself into the settling kind to avoid rejection and exclusion. It’s easier to say “I don’t want to be included,” than to say “I wanted, and did not get.”

Growing pains set in, and some of them persist today. I still catch myself being a “no” girl. Settling for less than everyone else comes far too naturally, even now, and I continue to demand higher things for others while quieting my own dangerous longings. Loved and encouraged as I am by my family and friends, I still instinctively reassure myself that I don’t need inclusion. I don’t need to be welcomed. I don’t need to transcend my most basic needs. If I can pay my bills and hold certain types of jobs, what right have I to anything more frivolous?

Growing pains are not eternal, and look how much growing I’ve done! I’m now more focused on inclusion than access. I’m more inclined to ask for a pleasant experience, rather than contenting myself with a bearable one. If my reaction to the escape room is any indication, I’m becoming downright spoiled, expecting to enjoy social gatherings and play an active role in activities I’ve paid for. I’ve practically become a princess!

I’ve come a long way, but I won’t diminish what it took to get me here. Dismantling my tendency to settle has been a painful and unpredictable process, with many discouraging moments when I’ve judged myself or others for wanting what nondisabled people are given by default. Occupying my place at the table has been, and remains, an ongoing work-in-progress.

Are you a settler? Have you learned to think of inclusion in terms of what you deserve, while believing it’s a right for everyone else? Is fun something you force yourself to earn? Do you pretend you like the margins because the centre might reject you?

Don’t settle to survive. Do not place yourself in a supporting role because main characters have bodies and brains that pass as “normal.” Break the pattern of treating less like it’s more. Be grateful, and be patient, but be a little demanding, too. Realize that a more vibrant life is possible, and allow yourself to want it, because no one else can make it happen for you.

Most nondisabled people don’t tie themselves in knots, wondering whether they deserve to enjoy their lives. So, my fellow disabled people, why should we?

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Trepidation and Triumph at CSUNATC2018

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When an exceedingly kind friend offered to be my full-time sighted guide for 2018’s CSUNATC conference, I recognized that I was being offered a unique opportunity that could not, under any circumstances, be passed up. I’d spend a few days in idyllic San Diego, learning about accessible technology and basking in the company of a long-time friend whose social and tech savvy can’t be overstated. She promised to help me navigate the conference, escort me to presentations, and provide networking opportunities I’d struggle to obtain on my own. I was elated. I was grateful. I was excited!
I was also terrified.
You see, dear readers, the word “introvert” was coined specifically for me. While I enjoy a rich social circle and do well when representing employers at special events, high-energy occasions like conferences are about as frightening to me as a nest of angry wasps. In fact, if I have to attend a networking event outside of an employment context, I think I’d rather take the wasps, and that’s saying something. Excessive noise, bustling crowds, and unfamiliar environments combine to create a horrifying mix, and nothing but my relentless quest for self-improvement could make me brave it. (Meeting one of my best online friends helped sweeten the deal, but only slightly.)
I knew how fortunate I was to be attending CSUNATC2018, and I felt the appropriate level of eagerness, but part of me was sure I’d need several barrels of courage to manage. For if there is one thing that makes me more uncomfortable and cagey than large-scale, international networking events, it’s being around large numbers of blind people.
Yes, readers: I am afraid of blind people, especially when they get together, and attending CSUN would demand that I not only confront that fear head-on, but that I ask myself, finally, why the fear exists at all.
The gist is this: I went to CSUN to learn about tech. I learned a little, and certainly enjoyed the presentations, but most of the education had less to do with the accessibility world, and more to do with deeply-rooted insecurities so entrenched that I’d forgotten what it was like to question or even acknowledge them.
If you’re interested in my journey of self-discovery, stay with me. If you hoped to read all about promising new tech, I’m sure there are many excellent write-ups by people much better-versed on the subject. Either way, enjoy!

“Let’s play ‘count the blind people!’”

As we weave somewhat drunkenly through the airport, dragging unwieldy luggage and trying not to trample anyone, my sighted guide chatters blithely about how many blind people she sees going by.
“There’s another one! I think that’s the seventh I’ve seen already.”
“Oh God.”
“What?”
“I’m legitimately afraid of blind people. I mean, they’re okay in small groups, and I love them as individuals, but when we all get together, it’s … I just don’t like it.”
My friend is too gracious to pursue the matter, but it becomes obvious soon enough that my mobility demons, which I’d warned her of previously, are out in full force.
My cane grip must be all wrong. My posture, surely, couldn’t be close to proper. I’m leading with my right shoulder, which is a problem I’ve never been able to correct. Do I ride escalators in a weird way? Am I the only one who doesn’t know print numerals well enough to operate an elevator without brailled numbers? Does it show that I’ve received so little orientation and mobility training I’m not even sure if my rudimentary indoor travel technique is right? Is everyone judging me? Am I a fraud of a blind person?
Oh God, everyone’s definitely judging me.
I want to go home now.

“Let’s get oriented!”

I attend a small orientation tour to learn the hotel’s basic layout, reasoning that I’ll pick the information up more quickly if there aren’t too many people around me. But, as we meander along, passing various significant locations, I lapse into a fog of panic. There is no way one cursory jaunt around this massive hotel will tell me everything I need to know. The only orientation training I’ve ever received was highly specific and route-based, meaning it did not teach me how to master new environments through discovery. I have never wandered in my life—at least, not willingly. Getting lost for fun, exploring, taking a look around … these aren’t my style. Meanwhile, every blind person around me seems to have a mystical sixth sense or, if they are as lost as I am, it doesn’t trouble them. The atmosphere is effervescent, and I feel like an intrusive rain cloud that has accidentally splattered into an unsuspecting sun puddle.
What the hell am I doing here? Who do I think I’m kidding? This was not made for people like me.
I really want to go home.

“You’re not alone. Also, have a tissue.”

It’s been a long day, though for the most part a pleasant one. I’ve listened to enthusiastic Microsoft employees laying out a new and encouraging direction for Windows 10 and its associated accessibility features. I’ve attended a fascinating presentation on disability services departments in academic institutions. I’ve even discovered that the GPS app, Nearby Explorer, has innovative new features to facilitate indoor navigation. My friend gives me sighted guide when I need it, introducing me to what feels like half the world along the way. She makes me sound like someone worth knowing, and I try to keep my impostor syndrome on a short leash. To my shock and delight, people admit to reading my blog—and liking it!
(So, it’s not just my mom and five friends? Cool!)
But now I sit, curled on my bed, offering the less flattering bits of my life story to complete strangers. One of them is an endlessly patient blind O & M instructor. I’m afraid of O & M instructors. (Are you sensing a pattern yet?)
They listen to me ramble despairingly about the inadequate skills training I’ve received; how out of place I feel among more competent blind people; how I am convinced I’m the only one who has ever been this useless at my age; how I must be a uniquely embarrassing failure; and how I’m afraid I will never, ever be anything more than I am right at this moment. In my self-effacement, I remain oddly verbose.
My equally patient sighted friend quietly passes me another tissue, putting her arm around me. This only makes me cry harder.
Then, the two compassionate blind strangers in my hotel room explain that they, too, have struggled. The instructor tells me that I’m far from alone, that it is possible for me to achieve the skill level I desperately want, and that I need not be so willing to let “I’m afraid” be what stands between the life I want and the life I have. Besides, she points out, plenty of blind people are where I am; they just choose not to put a fine point on it. For other blind people out there, the activities I find easy may seem like insurmountable challenges, and vice versa.
“Most of the people who intimidate you by going on about how good their skills are probably have something to hide.”
“I guess that does make sense.”
I plumb deeper, describing all the gaps between the talented and competent professional I know myself to be, and the bumbling wreck my brain insists I am. I was never taught to cut a steak in a way that made sense to me. I hold utensils in an unconventional way because the “normal” way has always felt clumsy. Sometimes, I simply don’t leave the house because the anxiety of existing in my skin is too much.
And, to my genuine shock, I am not alone in any of these things.
“But … why isn’t anyone talking about this?”
“We’re all too busy impressing each other, of course.”
“But I thought I was, like … degenerate.”
“No! You can be better. You can go higher. But you’re by no means the only one.”
“But I’m scared.”
“So was I.”
I am telling strangers the most intimate, shameful pieces of my long-buried trauma. I am exposing, to myself and to people I barely know, why I am so terrified of other blind people. I am opening up to unknown quantities in a way I’ve never done, not even with my friends, my family, myself.
Least of all myself!
And I am not afraid.
I am embarrassed and bemused and a little curious about what it is about conferences that fills you with the insatiable need to connect …
But Good God, I am not afraid.

“Just trust yourself.”

My default state, especially when dealing with new experiences, is “What do I know?”
Several times throughout the four days I spend at CSUN, my friend and I take a wrong turn of some sort, and something in the back of my mind insists we’ve made a mistake, gone the wrong way, gotten mixed up somewhere. Each time, I ignore it.
Each time, I am right.
Each time, my friend grows more playfully exasperated.
“Meagan, you should really try trusting yourself. You know things!”
“I just usually assume I don’t. Like, what do I know about this place?”
“You have good instincts, though. You should listen to them.”
Slowly, tentatively, I begin cataloguing the many instances over the years when my gut has stirred itself to alert me of some poor decision or wrong turn. In every case, if someone I perceived to be more knowledgeable than me disagreed, I became silent at once. Now, after more than a decade of systematic suppression, I don’t even consider speaking up.
Of course other blind people know more than I do.
Of course sighted people know where they’re going.
Of course I’m unqualified. Inexpert. Silly.
I can’t control the fact that I’m clueless about most things.
Or is this a choice I’ve made, one I forgot to unmake?
Is anyone telling me I’m useless, or have I been doing that to myself all along?
Heavy thoughts for a languid California afternoon!
But then, this does seem to be the week for them.

“Yes, it’s scary; and yes, you’re going to do it.”

Thump. Whir. Thump. Whir. Thump.
“What the hell is that?”
“That’s a door.”
“I don’t think we have these where I’m from…”
As it turns out, automatic revolving doors are much more frightening than they sound. Revolving doors are irritating enough; having once been stuck in one, I feel personally qualified to judge. The automated feature brings a whole new level of nightmare fuel, though, especially when you don’t have a clear understanding of how it works. All I can hear is an ominous thumping sound as the door thwacks repeatedly into something as it goes round and round at what I consider an alarming speed.
I am open to trying it out, particularly since I’m filled with new resolve and I have an O & M instructor with me once again. However, as she describes the procedure, which involves me “sticking [my] hand in there so the door can hit it,” I balk a wee bit.
By “balk,” I mean I stand there for what must be 10 minutes, coming up with all the reasons I definitely cannot—will not—attempt this.
Finally, I gather all my courage and approach the door, only to have it hit me squarely in the face.
A little shell-shocked, hiding treacherous tears, I retreat and try to regroup. Meanwhile, the O & M instructor, her blind friend, and my sighted friend stand by just as patiently as before, acting as cheerleaders and accountability officers in equal measure. Surrounded by all the (positive) pressure, I finally go for it.
As I lean heavily on the door and follow it in a dizzying circle, one of my blind companions runs along behind me, shouting jubilant encouragement. It is rather like going on your first water slide, with your proud elder sibling shooting along behind you, utterly thrilled on your behalf.
Such a small thing, really, going through a door. Ridiculous, even. I’m twenty-three, for heaven’s sake. I’m an employed, educated, mostly-functional adult.
But on this day, that damn door is everything.

“One more time before you go?”

On the day I was due to leave for home, I tried to cram as much as I could into a few too-short hours. I visited the exhibit hall, demoing a Braille tablet and expressing horror at how loud those new displays are getting. (I compared the scrolling sound to a very angry spider.) I met more people, flexed my extrovert muscles, and even handed out a resume to an accessibility company that was hiring overseas. Just to cap off the quintessential California experience, I drank a hellishly expensive juice blend and caught a few more rays of sun.
Feeling brave, I attempted to travel a little more independently, and promised a handful of new acquaintances I’d connect with them so I could share my writing and social media knowledge. This was a huge step forward, since I find it almost impossible to speak highly of myself outside of job interviews and cover letters.
Just as we were poised to leave the hotel, my sighted friend suggested I truly conquer that automatic revolving door, just to prove to myself I could.
It was tricky, and I grew progressively more nervous as concerned sighted people crowded around, hindering more than helping.
But, dear readers, I did it.
Twice.
Willingly.
As I came through the door the second time, more joyful than I felt was socially acceptable, my friend literally jumped up and down with sheer happiness, celebrating so loudly I could hear her through the door.
Most people might not understand why this tiny feat was important to me, and few people would appreciate the symbolism of it.
But she got it.
And, for the umpteenth time that week, I remembered: whatever I reveal, whatever I admit to, however I might struggle, I am not alone.
I never was.
And you know what?
Neither are you.

In Defence Of “Internet” Friendship

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“So, where did you meet your friend?”

“We used to post to the same forum, and–”

“Oh…so not, like, a friend friend.”

“A friend friend?”

“You know, like a…real friend. Someone you actually know.”

Friendships forged through online interaction have gained considerable legitimacy since I was a wide-eyed teenager first experiencing the internet, but it’s dismaying how often online connections are still casually dismissed by people of all ages. Apparently, there was a top-secret, authoritative friendship conference that resulted in an unofficial friendship hierarchy, which influences the way friendship is viewed by everyone ranging from seniors to high schoolers.

According to this mystical hierarchy, you can’t measure a friendship in love, but in geography. If you only see your childhood friend once a year for a quick coffee and cursory catchup, that still ranks higher than an “internet” friend whom you haven’t met in person but with whom you communicate daily. Friends who live across the street usually carry more weight with people than a friend who lives across the world, regardless of intimacy, frequency of communication, and overall satisfaction derived from the friendship. (This also applies to romantic relationships, as I learned to my immense chagrin while dating men I’d met online.)

Besides the fact that I find this arbitrary standard inflexible and anachronistic, I also feel it comes down heavily on disabled people, who seem to have an especially large number of online friends. Anyone experiencing loneliness, isolation, and/or a lack of conventional social opportunities can benefit from online social networks. Reducing internet interactions to something pale and second-rate targets a population that is already marginalized. While many disabled people can and do seek social opportunities within their geographical sphere, the internet is an enticingly level playing field where the experience is smoother and the supportive communities are numerous.

My isolated childhood remains a living advertisement for the value of online friends. I was an introspective soul who struggled to make friends in traditionally-accepted ways, so internet social circles were far easier for me to embrace. Online, I didn’t have to be the awkward, introverted blind girl. I could talk to people who were older and wiser than me, share resources with fellow blind peers, and enjoy a sense of social freedom that wasn’t present in my small-town ecosystem. I treasured the offline friends I did make, but rural life didn’t offer the diversity and sense of belonging I found online.

Now, as my life becomes busier and my chronic pain limits my social activities, I appreciate my supportive online network of disabled and non disabled friends more than ever. The love, encouragement, assistance, and companionship they offer are as real and meaningful as anything provided by my equally-adored offline friends. As my heart breaks with the death of an online friend’s husband, and soars with joy at another online friend’s success at work, I do not doubt the gravity and significance of friendships conducted and sustained via the internet.

My internet friends are indeed “real” friends. When they are troubled or grieving or frightened, I comfort them. When I need a friendly ear in the middle of the night, there is always someone to call. My online friends send the best care packages, letters, and virtual (but no less heartfelt) affection. We pay astronomical amounts to visit each other, and make memories we cherish for years. We assist each other financially, emotionally, and spiritually. My online friends may not be able to drive me to an appointment or hold my hand when I’m ill, but they can provide love, advice, compassion, empathy, and laughter.

Never let anyone disparage your online friendships. The internet is a fickle medium, and you may certainly find dangerous, duplicitous people there–people whom you will befriend and later delete from every social network, wondering why you were ever naive enough to trust them. More often than not, you’ll find people who are excellent friendship material–people who will fuse your happiness with theirs and do everything in their power to enrich your life. Whatever people say, however much they scoff, appreciate and cherish the friends you make online, and always measure your relationships in love and respect, not geography and popularity.

“Go Play With Your Friends!”

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“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 faze 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

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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?

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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?