I remember the first time I worried I might not ever be okay.
I was fourteenish, embroiled in a toxic not-quite-relationship with an older boy who’d discovered the exquisite pleasure of exploiting my insecurities. I had burgeoning confidence in my potential; I could picture a successful, if difficult, road ahead. But secure, relatively intelligent young girls who are quite sure they’re doing all right aren’t any fun to manipulate, so he began to poke holes in my bright future.
“You really need to be more independent,” was the regular refrain, delivered with tender cruelty I was meant to mistake for tough love.
“It’s a hard world out there, dear,” and “you’ll struggle for sure,” and “good thing I’m here to help.”
I got miffed, all the time. I even pushed back some, when courage was close at hand. On some level, I understood these criticisms were as rich as turtle cheesecake coming from a person who had accomplished less in his 18 years than I had in the four years that separated us. I had a lot to learn, in the blindness skills department most of all, but I was competing at music festivals, getting excellent grades, and managing not one but two chronic conditions without much medical support. I was about as on track as any teenager I knew.
He, on the other hand, was perpetually angry, hopelessly off track, with an uncertain future and a penchant for blaming his disabilities for abusive outbursts and bouts of frightening possessiveness. If anything, I should have been the one clucking with concern, but much as I sensed the wrongness of it all, I let his doubt poison my faith. Faith is there when the odds aren’t favourable, and to be disabled in a harsh world is to live with unfavourable odds. And faith, more than skills and talents and support, has always been the engine of my success for that very reason. I’m convinced he knew that.
In my senior year of high school, that engine had all but stalled. I’d broken all contact with that toxic friend long before, and he had since died suddenly. He could no longer mail me packages I didn’t want, or threaten suicide if I didn’t play nicer, or use social media to stalk me, or email sanctimonious lectures about my tragic inability to take care of myself. But the damage was done. He had triggered a landslide of second-guessing that, helped along by myriad forces in my life, had buried me to the point where all I could do was dread everything – dread university, dread my first job, dread new cities and exciting adventures and fresh mistakes to run with. I still had so much to learn, and I was paralyzed, rather than energized, by all of it.
Depressing, amiright?
Fortunately for us all, this is a new-year-new-decade reflection post, and those have to have a happy ending and a hopeful outlook. Them’s the rules.
The past decade has presented a lot of pain and self-doubt, brought on in many cases by the doubt of others. The pressure to make something of myself—to ‘transcend’ blindness, chronic pain, mental illness, limited educational opportunities, the whole bit—sat smugly atop the self-defeating prophecy that I’d never do or be enough. What was the point in trying?
But it has also blessed me with plenty of people who had so much faith that they couldn’t conceive of me being anything other than enough, maybe more than enough. I’d make mistakes, sure, and fall flat on my face a few times given that stubborn streak running through me. Ultimately, though, I’d pick myself up and keep charging ahead, because that’s just who I am.
“Listen,” one friend said bracingly during one of my late-night fall-apart sessions, “you are going to screw things up sometimes, in the blindness department and in the general life department. You’ll put reds in with your whites and burn hell out of your dinner and at some point you’re going to get really lost in a new place, and all of that will suck.”
“Exactly!” I wailed, missing the point spectacularly.
“It’ll suck, but you’ll wake up the next day and realize that life keeps going. And you’ll discover after a while that trying stuff is messy and scary and you can’t be good at everything you touch. I was embarrassingly far into living on my own before I felt comfortable with my life skills. I survived. You’ll survive too, and then you’ll understand that when someone says ‘you’ll never make it,’ that’s not helping you. That’s not motivation. That’s not love.”
This come-to-Jesus moment came on the heels of another friend getting so sick of my constant self-flagellation that he nearly cried with sheer frustration.
“I swore to myself I wouldn’t sit here and watch you do this to yourself anymore. Seeing you beat the shit out of yourself all the time hurts me, and it’s not my idea of a good time. Cut it out.”
(Some of my friends sure knew how to bring the constructive tough love, wowsers.)
As many of you know, I did end up going to university and getting jobs and doing fine on my own. I learned most of the skills I’d need to do well in the world as a disabled person, as a writer, as a professional, as an aunt and mentor and wife. And at one of my lowest moments, total strangers would remind me that I’m not alone in my doubt and my despair, that if you’re running low on faith you can always borrow someone else’s.
This journey hasn’t been romantic, and I’m still learning to have faith in myself and ask for help when I need it. I’m still suppressing the reflex to put myself down, just so I don’t have to deal with fear and failure head on.
But here is the wonderful, indispensable lesson of the decade: now that I’ve allowed people to believe in me, now that I’ve let their faith rekindle mine, brave and beautiful things are happening.
I’m wide open to another ten years of failures, and to many more beautiful things.
The Gratitude Series
The Red Robin Effect
Red Robin: a comforting, bustly sort of place where the food and music compete to see who can be the cheesiest. The birthday rituals are silly, the menu puns are cringe-worthy, and the fries require hours of hard work to digest. It’s one of my favourite places, and now that all locations in my area are closing, I think it’s time I wrote about everything it has meant to me.
I moved to the City of Edmonton to attend university at seventeen—a wide-eyed small-town girl with woefully little knowledge of what was about to hit me. Being visibly disabled in a rural setting came with its own challenges, but given enough time and community involvement, virtually everyone felt comfortable with Meagan and her long white stick. I wasn’t always included, but I was, at the very least, known.
Without warning, after seventeen years of solid familiarity, I was in chaos. I didn’t know anyone, and nobody knew me. My blindness fascinated and frightened people. I could no longer walk into a new environment and assume my welcome. Strangers had questions. Acquaintances had more of them. I had never felt so visible and at the same time, invisible. Reduced to a curiosity, I felt unmoored, lonely, and unsure of where I belonged. Everywhere I went, I was an inconvenience, or a safety concern, or another burden busy people didn’t have time for.
Not so with Red Robin.
Given that my residence building was steps from the nearest location, I found myself visiting regularly. At first, it was merely the most logical place to take just about everyone; the food was reasonably tasty and even more reasonably priced. I soon realized I was enjoying far more than the gooey cheese sticks and nostalgic mid-2000’s playlist, however. I was experiencing, for the very first time outside my inner circle, unconditional inclusion I didn’t have to earn.
The staff knew about their own braille menu, (by no means a given), handing it over without batting an eye. Servers nearly always described the location of dishes and drinks when setting them down, as casually as if every single diner needed the same detailed information. Plenty of extra help was offered, but never foisted upon me. When I showed up with visually impaired friends, no one seemed flustered or out of their depth. When paratransit took ages to pick me up, they let me hang out in their comfy seating area without a whisper of annoyance. Not once in seven years of frequent visits did I feel like anything less than a valued customer—a customer worthy of the same professionalism everyone else received as a matter of course.
It doesn’t sound like much, does it? But several of my friends agree that, whether through diligent training or a generally positive culture, Red Robin has cultivated broad, environmental inclusion of their blind customers on a grand scale few other businesses have managed. For me and for many, they have danced delicately along that razor-thin line between help and hindrance; attentiveness and intrusiveness; kindness and condescension. And they have done so in a way that will always set them apart.
My husband and I enjoyed one final dinner at Red Robin, waxing nostalgic and eating far too much. We reminisced not only about our first date there, or the many happy evenings I’d whiled away as a student, but also of the effortless way I’d fit in. Red Robin had taken on an almost mythical greatness in my mind. It had become a safe haven where I could just about guarantee I wouldn’t be spoken to like a child. They’d never have a menu I couldn’t read independently. The servers wouldn’t talk to my tablemates to find out what I’d like to order. No one was about to grab me without asking, tell me a menu item I’d chosen was “too hands-on” for a blind person to manage, or refuse to help me operate the debit machine (the idea that blind people can and do pay for their own meals is too much for some, sadly). In short, I could walk into any Red Robin, any time, and expect to be treated with dignity.
I no longer have a starving student’s appetite, nor am I able to gobble fish and chips the way I once did—at least, not without plenty of protests from a stomach that has been spoiled by a healthy diet. I won’t miss the bottomless fries or the syrupy cocktails. But I will miss the incredible luxury of knowing that I can come through that door with my long white stick, and sit down to a peaceful dinner like everyone else. I’ll forever be grateful to all the folks at Red Robin for giving me the gift of forgetting, if only for half an hour, that life isn’t always this simple.
A Cat to Scorn Me (and Show Me How to Love)
I’ve heard it said that to achieve perfect balance in life, everyone should have a dog to worship them and a cat to scorn them. I’m proud to say that, having grown up in a household that was almost always populated by both, I must be an exceptionally balanced soul.
Over the years, three dogs have taken up residence in my childhood home, not to mention my heart, and we’ve had the same beloved cat, Minette—moderately scornful, often dog-like in her affection—for 17 years.
She is in many of our home videos. She has slept almost as many nights in my parents’ home as I have. She knows every secret nook, every cozy sock basket and every strategic perch. She made me into a cat person, all by herself.
I’ve cried into her fur after many difficult days, and stuck bows on her indifferent little head on many Christmas mornings. My parents joke that, functionally, she helped raise their kids. Few things in this world bring me more joy than the knowledge that this cat exists.
You know where this is going…
Tomorrow, Minette will be making a trip to the vet, and she will not be coming home from it.
And so, I will turn to writing, as I’ve always done when grief comes knocking, or barging rudely, as it’s wont to do. I will tell the story of a cat who remains, despite the multitude of wonderful dogs in my life, my very best animal friend—a friend who helped me grow, gave me confidence, and taught me that Albert Ellis was right when he claimed love is “largely the art of persistence.”
“You are not Special.”
From the moment she came into our lives as a delicate-looking kitten with a croaky mew, Minette made it abundantly clear she saw no reason to treat me any differently than the other members of the household. (You can try arguing she simply wasn’t bright enough to realize I couldn’t see, but given the amount of things she tried to get away with while I was the only one around, I’d beg to differ.)
No, she would not be moving out of my way, no matter how many times I bumped into her. Nuh uh, she was not going to signal when I was about to accidentally sit on her; I’d just have to learn to be more careful. No, she was not going to spare me from duties like letting her out, letting her in, fetching her water, and providing mandatory snuggles.
And, yes, I was just as capable, as loved, as wanted as anyone else.
This doesn’t sound like much, but as a disabled eight-year-old, I was accustomed to being treated differently by just about everyone in my life. Grownups had different rules, expectations, goals, fears. I struggled to be helpful. I felt out of place. I was uncomfortably aware, as were those around me, that I was the odd one out, despite my family’s best efforts.
But around Minette, I was just another member of her loyal human staff, perfectly able to do her bidding, and perfectly worthy of her unreserved affection. In scorning me–in expecting me to adapt to circumstances not tailored to my every need–she taught me that life is full of surprises that will wind around your ankles and trip you, no matter how unprepared you may be.
Humans would work around me. Dogs would get out of my way.
Minette, not so much.
Balance, right?
“Human, I Summon Thee”
Minette isn’t the least bit imperious. H. P. Lovecraft, who liked his cats “lithe and cynical,” would not have approved. The choicest spot was always as close as she could get to the nearest available lap, and her favourite activity was waking me in the mornings with a torrent of kisses. (Her tongue may have had astonishing exfoliation powers, but I would personally have preferred the alarm clock.)
Since she split her time between indoor and outdoor pursuits, she was often in need of something or other.
“Human, I have kicked my toy under the stove. Help!”
“Human, I need to take up 90% of your queen-sized bed, not this paltry 75%. Move over.”
“Human, I am hungry. I am thirsty. I need to go out. I need to come in. I need a cuddle. I need you!”
For the first time, a fellow living creature was in sincere need of me, and I was able to fulfill that need. It was one thing to do chores, but it was another to hold, feed, and care for an animal that depended on me as much as anyone else in the family. Somehow, caring for a dog wasn’t quite as validating. The implicit, unwavering trust that cat put in me, a trust I hadn’t yet found elsewhere, not even in my dog, was transformative.
Adults were forever telling me to ‘be careful,’ ‘slow down,’ ‘let me do that for you.’ Dogs were always pushing me out of the way—of traffic, of water, of anything that looked remotely dangerous.
Minette, on the other hand, saw no reason why I should not attend her as faithfully as any other. She barely blinked as I handled her newborn kittens, and was never shy about insisting I find her a treat. Speaking as a blind person who still fights to be useful, nothing builds confidence like a little bit of trust.
“I’ll Be Back”
I don’t know of any cat who loved bigger, harder, more persistently than Minette. You couldn’t get rid of her. I have many memories—God, but they hurt to think about now—of pushing her off my lap as she walked all over my book, or my keyboard, or my plate, or my fancy new outfit. (In our house, you weren’t ready to go out until you’d been sufficiently furred up.)
She had to be on you, not beside you. She had to lie on your pillow or in your arms, not down by your feet. She needed all the snuggles, all the time. And she had a special, highly effective meow pattern in place to make sure she could always get through my bedroom door:
- Meow #1: inquisitive and chirpy. “Meagan? Are you awake?”
- Meow #2: cheerful and warm. “I knew you were up! Let me in, will ya? I haven’t walked all over your head yet today.”
- Meow #3: confused and injured. “You mean … you’re actually pretending to be asleep right now? Seriously? I can hear you turning pages. I know you’re awake. Not cool, Meagan!”
- Meow #4: resigned and piteous. “Okay, you win. I am now desolate and despondent, but that’s just fine … I’ll remember that. And by the way, the guilt’s going to kick in any moment now.”
The beautiful thing about having Minette in my life was that I got to observe unconditional, extravagant love on a daily basis. I could push her off my lap five times, but she’d come back six. I could trip over her, accidentally shut her in an empty room, even forget about her. But I could not ever lose her joy at seeing me—her delight in the time I spent with her. No matter what kind of day I’d had, no matter what mistakes I’d made or burdens I carried, there was always that engine-like purr. If I had a migraine, a broken heart, truly torturous chemistry homework, she was there. For her, my need for comfort was always valid.
I hope I can learn to love like that—with a few more boundaries and a little less keyboard-trampling, of course.
Run free and chase the sunbeams, Meeners. Thank you for everything you gave us.
It Takes an Army: How to Enjoy Your Wedding Without Losing Your Mind
It takes at least two to get engaged.
It takes at least three to get me into a wedding dress.
And it takes an army to help a blind, migraine-prone, overstressed and undercaffeinated introvert survive her wedding day.
Here’s how we managed it—i.e. here’s who did all the hard stuff while I freaked out—with some advice you didn’t ask for. You’re welcome.
My husband and I wanted the big wedding—really. We wanted a massive party where more than a hundred people could eat, drink and be merry with relative abandon. We wanted dinner and dancing and all the lively, extravagant trimmings. We wanted it to take place in a rural (read: affordable) location, access barriers and all. We wanted everyone to have a fantastic time despite the pitfalls…
And we wanted it to be enjoyable for a bride whose inability to handle loud noise, confusing environments, and tricky logistics is legendary at this point.
If you want all that to somehow reconcile itself, you’d better have an army. Good thing I had one!
First and foremost, it takes a patient, forgiving fiance, because if you can survive wedding planning without driving each other insane, you’re winning.
Pro tip: Marry the right person. Helpful, I know. I’m here all week.
Second, it takes incredible wedding planners. Mine weren’t afraid to describe visual elements, make decisions when I was like, “I dunno,” build archways, haul benches, and drive the blind guests around, because my location was the worst.
Pro tip: Hire my family.
Next, it takes a stellar wedding party. Fortunately for my sanity, mine have excellent de-escalation and emergency caffeine-fetching skills. One of them knew where to find good sushi and wine at a moment’s notice—a lucky thing, considering my wedding-eve-jitters. (For the record, I was freaking out about tripping over my dress, or ruining my makeup in some irreparable way. The joining myself to another human being for the rest of my life bit was chill.)
Pro tip: Find groomsmen and bridesmaids who can make anything fun, even photos. A willingness to do a fortifying shot minutes before the reception helps.
Then, it takes photographers who aren’t afraid to give precise, detailed descriptions, down to where chins should be, because that stuff is not super intuitive when the bride and groom are both visually impaired to varying degrees.
Pro tip: Ideally, you’ll select photographers who don’t mind physically posing you, because you will eventually admit you have no clue what wedding photos usually look like. Oh, and make sure your photographers tell you when it’s okay to stop smiling. Your facial muscles will thank you.
After that, it takes a very special officiant. Ours, a beloved auntie (I have a lot of them, they are lovely, 10/10 would recommend) knew our quirks, so she could serve the dual function of keeping us calm while preventing things from getting too serious. Her improv skills came in handy when we realized, halfway through the ceremony, that nobody had the rings.
Pro tip: A wedding isn’t a wedding until you’ve invoked Gandalf at least once, and you should probably throw in a Dumbledore reference, just to be safe. The rain held off long enough for us to get hitched, so I guess we had our bases covered.
Of course, it takes hilarious MCs. Ours kept us in stitches all evening. We gave them a mile of leash, and they ran with it. (I think at least one person was a little scandalized, but no pearls were clutched in the making of this wedding.)
Pro tip: If it brings you joy to laugh at yourself, work out your limitations ahead of time, then let them “go there.” This is your day. If you’re cool with a wee bit of a couple’s roast, dig in.
It takes an entire battalion of friends and family to play the piano, travel long distances in rough conditions, tie a zillion twist ties, stand around in the rain, help a load of blind people navigate a bewildering buffet, take beautiful pictures, and keep the hair from falling out of my head.
It takes coworkers who throw parties so thoughtful that I broke my no-crying-at-work rule (again).
It takes people who give braille cards, and tactile cards, and hand-drawn cards, and fabulous hugs, and jaw-droppingly generous presents.
It takes a task force of “virtual bridesmaids,” of all genders, who have listened patiently to an entire year of rambling, stress cries, indecision, and other tirades.
It takes a tribe that made a loud, chaotic, confusing environment fun, even for my husband and me, worriers extraordinaire.
In short, it takes an army of love, creativity, and grace.
Pro tip: Find your army, big or small, and let them carry you through this. It’s more fun that way.
Meagan’s Guide to Stylish Farewells: On Coming to Terms With Vision Loss
Sighted people are always caught off guard by how casually I treat my vision loss, whose inexorable progression began the day I came into the world. While I understand the assumption that vision loss is all sadness, all the time, that isn’t the case for me. If my vision was ever good enough to accomplish useful tasks like driving, or fun things like painting, I’d likely be far more bereft. As it is, what little vision I was born with is more liability than blessing, becoming increasingly burdensome as it dwindles.
The one thing I occasionally allow myself to mourn is the loss of colour perception. Though my understanding of colour was never perfect, my childhood is filled with memories of gazing with fascination at anything brightly coloured, especially in nature. Now that I’m all grown up, and my vision loss is more advanced, I don’t reliably notice colour unless I make a deliberate effort. Even then it’s hit or miss.
I’ve always known I’d eventually lose all my colour perception, but over the past few months, I’d begun to view that loss as part of my present, not my future. It was no longer on the horizon. It was upon me, happening in real-time, and I couldn’t deny that it seemed to be slipping away more quickly every day.
The way I saw it, I had two options: I could lament its vanishing and write more soppy posts about it, or I could give it a send-off worth remembering. I chose the second option.
I wanted to infuse this time in my vision loss journey with joy and gratitude, focusing on what I had rather than what I’ll lose. To that end, I enlisted the help of my charming and devastatingly attractive friend Krissi (did she pay me to say that? You decide.)
She fell in love with my vision (ha ha) and planned the most colourful day she could imagine: a plant crawl. All day long, we visited various greenhouses, including the Muttart Conservatory and Greenland Garden Centre, exploring plants from around the world. There was more colour than I had the capacity to process, and it truly was a feast for my eyes and soul.
Surrounded by vibrant flowers and exotic trees, I got all the colour-gazing I could ever want. I also discovered something else. Interacting with plants is a surprisingly tactile experience, if you have a brave and patient plant expert like Krissi nearby to keep you from impaling yourself on a cactus. I’d always thought of plants as delicate things that didn’t like to be touched, and there was the looming threat of insects that would make their displeasure painfully known. In these climate-controlled environments, I was able to gently acquaint myself with the glossiness of banana leaves and the shapely curvature of a fruit tree. I stroked roughly textured bark and soft foliage that rivalled felt. I found a leaf that looked exactly like a feather, with its slightly downy grain. I touched leaves so fuzzy they felt like peaches, and other leaves that felt like nothing so much as the rough but cozy blanket my grandfather might drape over the back of his rocking chair. I discovered creepy-feeling succulents and graceful, delicate herbs. Krissi nearly had to tear me away from a plant that appeared to have sprouted its very own umbrellas. There was so much to touch that I occasionally forgot I was primarily there to look.
The biggest surprise came when we stopped off at Krissi’s house so she could teach me the tricky art of flower arrangement—another chiefly tactile activity. I assumed it was all about doing whatever looks prettiest, but I soon realized that what felt symmetrical was the most reliable test for what would look fabulous in a vase. To my surprise, I learned that rookies use their eyes, while pros use their hands. Krissi patiently showed me how to trim stems, strip leaves, and thread flowers through my fingers in an awkward X shape.
Thread, twist. Thread, twist. Thread, twist. Snip snip snip…
Boom! I suddenly had a gorgeous bouquet, which made it look like I really knew what I was doing. (I still don’t, but photographic evidence of my triumph will forever suggest otherwise. Tell no one.)
As I cleared away the pile of stems I’d cut and sat back to admire an arrangement so bright I could actually see it, I experienced the air of celebration I’d hoped to inspire. I knew I’d soon see the world in shades of grey, and that not long after that I’d see nothing at all. But in that moment, I sat back and absorbed the incredible gift I’d been given, which was no less wonderful for its impermanence.
I’m sure that sadder times are ahead of me, with a blind community that is so often dismissive of partially sighted pain. I do not expect to remain this philosophical and high-minded about it all. I will have days where I’m grumpy about this slow march to darkness, even though I am already blind, for most intents and purposes.
But I’ll always have the comforting knowledge that I can live well and happily, colour or no colour, light or no light. And I’m lucky to have enjoyed both, if only for a while.
Talking to (Disabled) Strangers: A Handy Demonstration
The driver who picked me up from work today was a stranger, so I prepared myself for the typical onslaught of questions, well-meant but awkward and unbearably personal:
Are you totally blind or only somewhat blind? What happened to you? Were you born that way? Do you live on your own? Is that safe? Do you have a job? That’s so nice that they hired you! Do you have a helper? Does the government pay for your groceries? By the way, where’s your dog?
He introduced himself as my driver—no grabbing, no assumptions about how to get me from point A to point B—and gave me full control over how he guided me. He explained that he’d had to park in a tricky spot, describing obstacles so well that I found my way into the vehicle with perfect efficiency. That was the last time disability was mentioned.
On the way home, he asked me scores of questions, just as I’d expected. There was a slight twist, however:
Do you work in that beautiful building? Is it that gorgeous inside as well? How’d you become a speechwriter—that’s really impressive! What kind of education do you need for that? Who’s the best speaker you’ve worked with? Did you study historical speeches? What do you think of Churchill?
To my immense delight, he interspersed these novel, engaging questions with amusing anecdotes. He described his attempts at improvised dinner theatre. He told me about the time he channeled his inner Basil Fawlty, to hilarious effect. He asked me what “extemporize” meant. He mused about turning his many exploits into a book.
“I’m a great storyteller, but I can’t write. My punctuation sucks.”
“Eh, that’s what editors are for. You bring the stories. We bring the punctuation.”
As he dropped me off, he casually assumed I’d know the best way to find my building’s entrance, seeing as I live there and all. Sounds inconsequential, I know, but most drivers argue, at least a little.
Accompanying me to my door, he told me it had been wonderful to meet me, slipped in one last excited comment about how cool it was to chat with a speechwriter (guys, I’m really not very important, for serious), and he was off.
It was only as I was unlocking my apartment door that I realized it: I had had an effortless conversation with a complete stranger, and it had happened without my usual redirections.
At this point, I’m very skilled at turning a conversation away from topics I find uncomfortable, but this perfect interaction had happened out in the wild, so to speak, where conversations with strangers tend to derail without my intervention. There was no contextual framework, like a business mixer or conference space, to set the tone and subject matter. I hadn’t been the one to initiate, and I had not once felt the need to steer. I was free to sit back and forget, for a few minutes at least, that this sort of thing doesn’t happen every day. I happened to meet a person with natural tact and a sociable, curious nature. For once, that had been enough, all by itself, to set the interaction on a course we could both enjoy. More extroverted disabled folks might find this process easier, but connecting in this way has always been a chore for me.
I let this sink in for a moment, surprised at the power of such a small mercy. We had talked about writing and theatre and editing and Sir Winston freakin’ Churchill, but we had not talked about my cane, or my broken eyes, or the weird bruising on my face left by dozens of severe migraines. We hadn’t even discussed my tragic lack of a service dog. Disability had only come up when it was relevant, and the things that made me interesting stole centre stage from the things that made me strange.
Lest you get the impression my social life is even more stunted than you first thought, let me assure you I have animated, fascinating conversations all the time. But they almost never take place when the slate is clean. With unknown quantities, I’m usually back at square one, digging for common ground while the other party focuses on whatever makes us different.
But not today. Today, I got to be Meagan the speechwriter; Meagan the dinner theatre enthusiast; Meagan the Fawlty Towers fan.
Tell me: if we’d stayed on the topic of what the stick is for and how I use computers and why I have those bruise things on my face, how would we ever have gotten to the fun stuff?
So that, friends, is how you talk to a disabled stranger—with the kind of curiosity that would rather ask, “What do you do?” than “What happened to you?”
Weightless, Wanted, Worthy
While reading Martin Pistorius’s powerful book, Ghost Boy, I was struck by a passage in which Martin, experimenting with a body that does not behave predictably, attempts to make breakfast for his partner, Joanna.
I forced the knife downwards, cleaving it to my will as it hit the side of the toast before skittering across the plate and leaving a glistening red slick on the table. I stared at the battered toast before looking at the floor, which was covered in coffee granules and sugar. The butter looked as if a wild animal had chewed it and jam had erupted like a volcano across the table. Euphoria filled me. I’d made toast, coffee was waiting in the cups, and the water had boiled—Joanna was going to have breakfast. I banged a spoon on the table to let her know I was ready, and a smile spread across her face as she walked in. “How nice to have breakfast made for me!” she said.
Some might interpret Joanna’s enthusiasm as pretense. As you read through the book, you quickly discover that while Joanna is fully aware of the many barriers Martin faces, she supports his efforts to try new things, even when they end in an imperfect, sticky mess. Martin and Joanna’s marriage is founded on genuine respect and validation, with no suggestion that she is giving anything up to be with him. Rarely have I seen such a beautifully balanced framework, where limitations are acknowledged but never allowed to overwhelm the entire structure.
Naturally, reading about Martin and Joanna got me thinking about my own relationship. My partner has a disability of his own, but it is invisible, and comes up so rarely I sometimes forget it exists at all. We live much like a couple in which only one party is disabled, and we both had to adjust to the different things we need from each other to grow and be happy.
In addition to needing all the conventional things, like love and companionship and the space to laugh with someone in the face of life’s trials, I also crave specific validation from my partner—the validation that says, “I acknowledge that you are disabled, but you are no less complete for it.” From day one, even as I walked him through my various barriers and how they might be an issue for him, he treated me like a whole, autonomous person, and nothing less. If I ever feel inadequate or out of place in the context of our life together, it is my own anxiety talking, not his. Again and again over the past few years, I have been caught off guard by the simple, implicit trust this man places in me every day, without thought and without a hint of charity. Strangers on the bus might wonder what I’d do without him, but he frequently asks me what he’d do without me.
What does this look like in practice? Mostly, it’s an intangible thing—more felt than seen, and usually unspoken. I can point to scores of small things that add up to a larger pattern, and that’s how I can best explain the dynamic.
For example, he asks my opinion on things, with the assumption that of course I’ll have one, and of course it’s as valid as anyone else’s. He doesn’t bombard me with questions about how “blind people” feel about X Y or Z. No, he asks about the best way to install a showerhead, or which ingredients would enhance a new recipe, or what political news of the week is most relevant. Far from assuming I mustn’t be knowledgeable about anything outside the realm of my disabilities and personal interests, he assumes that I am likely to know a little about a lot, and if I’m not sure, I’ll be straightforward about that. I don’t always have opinions or suggestions, but it is so novel and so satisfying to be asked as an equal—as someone who knows things and whose judgment can be trusted. It shouldn’t be so remarkable, but I think most disabled adults would agree that unless the topic is disability-related, our voices are often overlooked.
Like Joanna, my partner doesn’t expect perfection from me, but does expect me to experiment, and won’t ever shame me for the results. He would rather I demolish the kitchen cooking breakfast than have me avoid cooking altogether in case something goes wrong. It’s not that he humours me or enjoys watching me struggle. He simply expects me, as his partner, to contribute where I can and shed my irrational insistence on perfection. If I get hopelessly lost while attempting to conquer my travel demons, he’ll still be sincerely proud that I was brave enough to try, without resorting to empty praise or minimizing my mistakes.
As I’ve noted several times on this blog, living well with disability requires a great deal of self-confidence—or plenty of skill at faking it until you make it—because that confidence won’t come easily from outside yourself. If you don’t have faith in your abilities, you may struggle to find someone else who does. The less you feel you have a right to your place in the world, the less welcoming the world seems to be. While I’ve cultivated my own strong sense of self-respect, I’ve discovered it’s far more bracing when my partner reflects it back at me. I am fortunate indeed to make my home with someone whose faith in me exceeds my own, never hesitating to remind me I am whole.
I’ll return to Martin’s words, because he put it so beautifully: “I’ve lived my whole life as a burden. She makes me feel weightless.”
I, too, have lived my whole life worrying that I am too much like unwanted luggage. But he, together with so many others, makes me feel weightless, and wanted, and worthy.
From where I’m standing, there is no greater love than that.
In Praise of Those Who Share Their Wheels
Where I grew up, a five-minute drive (an hour’s walk) would take me to school, a post office, the nearest convenience store. Forty-five minutes in a car would get me to music lessons, assuming the weather cooperated. Two hours got me to the nearest city, where decent shopping could be found. Four hours got me all the way to Edmonton, for music competitions and specialized medical care. To get anywhere of consequence, I needed more than my two legs, and my legs were all I had.
Part and parcel of being a kid in a rural area was asking for rides—to the store, to extracurricular activities, to friends’ houses, to school, even, if you managed to miss the bus. We were all used to it, and all our parents were used to the asking. Many childhood memories involve being driven everywhere, through rain and snow and parental exhaustion. It was annoying to be so dependent, but we were all similarly needy, so it never chafed too badly.
Then, all around me, my friends and relatives began turning sixteen and getting their licences. Driving fever hit, and suddenly everyone was blasting forbidden music at top volume, speeding around in second-hand vehicles, thrilled with their new freedom. For the first time, getting where they needed to go was a matter of grabbing their keys and promising they’d be home by eleven.
Everyone but me, that is.
At sixteen, seventeen, eighteen, I was still hitching rides, especially when out of reach of a cab or bus. Visiting my family during the holidays meant convincing some kind soul to ferry me home. Getting to the hospital when I was too weak to rely on a cab driver meant calling everyone I could at inconvenient hours, asking the dreaded question through tears. Socializing with friends who lived on the outskirts of the city meant expecting them to drive half an hour out of their way, much of it through downtown traffic, for the dubious privilege of seeing me. My life, as a twenty-three-year-old urban dweller, is still influenced by my inability to drive. Asking for someone else’s wheels never gets easier, though it is routine and inevitable.
I could go on at some length about the ways being unable to drive makes life harder, more precarious, more difficult to plan, less convenient, less independent. Today, I’d rather focus on the people who answer yes, over and over. I want to honour the relatives, friends, and acquaintances who have driven in all weathers, at all hours, for all reasons. I want to highlight the kind stranger who, discovering me lost and bedraggled during a storm, drove me to my house without any thought of recompense. They have performed this service whether they felt like doing so or not. They have done so without expecting a return on their investment of time and gas money. They have done it, if not always without complaint, then with generosity. The music lessons and emergency medical appointments and shopping trips and singing engagements and social visits have all meant the world to me, and I owe that joy to the people who transported me there.
When someone asks for a ride because they have exhausted all other options, you know they desperately need it. You know it will improve their lives in ways large and small. You know that it is not usually easy for them to ask.
If you’ve been a frequent driver for others, know that you are valued, and needed, and appreciated. We may not always tell you so, but it’s no less true.
It’s easier than ever to travel without a vehicle, but there will probably always be a need for a kind soul with a car.
The Man Who Taught Me To Fish
Being disabled means having your competence questioned at every turn. It means accepting that your intelligence, your autonomy, your very worth are always up for debate by those least qualified to make judgments. It means, therefore, that you must be resilient, whether or not it comes naturally. Finding this strength, this essential self-reliance, can come about in many ways. For me, one of the fortunate ones, the tools for independence were introduced early and often.
* * *
We kneel together on the thin carpet of my bedroom. My favourite cassette tape, a collection of fairytales, is in my small, tentative hand. Speaking softly, my father explains how to slide the tape into the player—gently, now—and places my fingers on “play.” As the opening music rings out and understanding of my new skill breaks over me, I can only smile widely enough to split my face, thinking dreamily of how delicious growing up can taste. It’s a small step, playing my own audio books, but the joy lingers.
* * *
Each time I learn something new, even mundane things like the location of straws at the Starbucks near my apartment, I experience a moment of undiluted triumph. Rarely overconfident, I am not the archetype of success some would wish me to be. Instead, I skirt the gaps in my knowledge and abilities with an unthinking ease bolstered by years of practice. While my blind peers pursue adventure and hone new skills for the sake of doing so, I hold my shameful passivity close to my chest, owning what is necessary and burying everything else. Showing weakness, I have learned, is a grievous sin; admitting I’m comfortable with slow progress is worse. Even so, as I break this ancient habit and push my boundaries, I feel a thrill that once coloured each day of my childhood, when there was someone there to rejoice along with me. Of course he would still do so, if I called him on the phone and said “Hey, Dad, I learned a new route today.”. My cheerleader is still waiting in the wings, should I ever need him.
* * *
We are traipsing through an amusement park in the sweltering summer heat. I am sulky and bored in that particular way of children. I’ve had my fill of rides and novelty food; I am ready for familiar surroundings and a good book. As I prepare yet another whiny entreaty—let’s return to the car, get a cool drink, pull out the Harry Potter novel I wish I was reading—Dad pulls me aside to examine a life-sized, intricate statue of a cow. It occurs to him that I’ve never touched a real cow before, despite having driven past them a hundred times. As he runs my hands over the statue, describing each part with patient enthusiasm, I realize I’m feeling just a little less blind, a little more curious about the world around me.
* * *
The process of spontaneous discovery was a common feature of my childhood years. Seized by inspiration and vicarious wonderment, Dad would pause and encourage me to notice a rhubarb plant, an earthworm, a bird’s nest. New kittens were placed delicately in my eager hands, and I was permitted, even encouraged, to hammer in a few nails or help paint a wall. If it captured my interest, it was mine to touch and try and learn. Assumptions about safety and propriety and ability were seldom made. Mine was a world of discovery, because Dad had no doubts, no reservations, no unreasonable fears.
And so, I had no fears, no doubts, no reservations of my own.
* * *
“I’m just bad at math, okay? I’m stupid, I guess.”
Salty tears stain the Perkins brailler I’m using to hammer out surface area calculations. Slightly flummoxed by all the tears, Dad makes a joke about me rusting the metal brailler if I don’t stop crying. He coaxes a grudging laugh from me, but the levity doesn’t make the work any easier. I have sat before this abstruse tactile diagram of a cube for literal hours, convinced that I must be less intelligent than fellow students, all of whom had exclaimed that this unit was simple. I, a star student then, had trouble accepting this reality in which I was in need of help with my homework.
I look up to find Dad placing a wooden cube in my hands.
“I went to the shop and made you some shapes. I think your problem is that you’re not understanding the two-dimensional diagram. I think a 3-D model will make way more sense to you. You’re not dumb; I know you can understand this. See?”
Sure enough, as he points out each facet of the cube, demonstrating how they correspond to the ones on the page, something clicks into place. Suddenly, I’m finding surface area as easy as everyone else had, all because someone was able to teach in a way I could grasp.
I am not stupid after all, or terrible at math; I am just blind—blind, and very bad at deciphering diagrams, apparently.
* * *
Blindness has taught me to work more diligently than others. In my slow, steady climb, there is little room for self-doubt–no room at all for surrender. When everyone else seems poised to give me an out, to say, “Well, Meagan, you tried your best; you can go home now…” I am compelled to reply in the same way each time: “Never.” The stubbornness and refusal to concede, (the very qualities that justly infuriated my father while I was growing up), are the sources on which I draw for support through each new hurdle.
When voices say, with stolen authority, “Meagan, you’re blind. You will never—“ another voice pipes up, strident even in its uncertainty: “Watch me.” Much as Dad must have cursed my inflexibility, I think he has grown to respect its power. He should, for I believe he is the one who gave it to me.
Dad taught me to fish, of course. I’ve been fishing since I was so small that my rod had to be tied to my life jacket. He taught me to cast and jig and reel in even the feistiest ones. He also taught me to respect the fish, never causing undue suffering or taking more than my share.
But, as you may have guessed, he taught me to fish in other, less obvious ways. His unwavering faith in my personal abilities meant I was rarely allowed to think of myself as incapable. Disabled, sure, but never incapable. I was discouraged from wallowing in self-pity, or inviting anyone else to feel pity, either. Through patience and determination, my father convinced me that I am strong—not constantly, but often enough to succeed. To this day, my dad is the person I think of first when I prove to myself, once again, that blindness doesn’t have to ruin my life or my career or my dreams. Whenever he describes something new or lights a much-needed fire under me, I remember and honour the joy of learning to fish—because at the end of the long, hard day, all I have is me. I have my father, among many others, to thank for making sure I’m a damn good person on which to lean.
So, thank the people who taught you how to fish, and those who remind you that you still know how. You owe them a lot.
In Praise Of My Mother
It’s been a long time since I’ve posted something warm and fuzzy, and I think Mother’s Day is a perfect excuse to do so. I was blessed with terrific parents, and what better way to honour them than with a blog post?
Today, I write a tribute to my Mom, who taught me the meaning of strength and perseverance, even when you’re tired and you’re frustrated and you just don’t wanna.
Don’t worry, Dad: yours is coming in June.
“It hurts to be beautiful,” my mom would say as she pulled my unruly hair into a ponytail, “now hold still.”
I did not want to hold still, however. I wanted to read a book, or run around the yard, or sing to myself in a corner. Ultimately, I wanted to do anything but sit, unmoving and docile, while my hair was tugged and twisted and manipulated in ways I was sure must violate some kind of child abuse law.
“I don’t want to be beautiful!”
“Yes, you do,” Mom would mutter distractedly through the pins in her mouth.
“What’s the point? I don’t care what I look like.”
There it was: the argument that was difficult to win when dealing with a blind child who treated “girly” like a curse. I was usually okay with playing dress-up and so on, but when it came to the everyday agonies of making oneself presentable, it took me a lot longer than I’d like to accept that, even though my own eyes didn’t work, other people’s did—and what they thought mattered.
Even if I’d been an obliging child, raising me would not have been easy. Mom’s responsibilities extended far beyond wrestling me into some approximation of “well-groomed” after all. Raising a child with a disability meant both my parents were forced to recognize that sometimes life simply isn’t fair. Having a blind child, though challenging, was probably the least of Mom’s problems. Society has always gone out of its way to shame mothers, and Mom was not exempt. If anything, raising a disabled child actually made her more vulnerable to it. More than once, another mother has told her that, had I been their child, I’d have turned out better—more independent, perhaps, or more competent, etc. In these cases, Mom, who is a far nicer person than she has to be, has simply shrugged it off, reasoning that “if they knew what it was like, they wouldn’t be saying that.” Let’s just say I’m glad I won’t be having kids; I don’t think I could be half so tolerant.
Yes, having a disabled child means that several parents you meet, regardless of how ill-informed and inexpert they may be, will feel comfortable telling you all the ways in which you’re messing it up. Some are so confident that they’ll insist they could do it better, and as the parents who actually know how difficult it can be, mothers like mine are left to shake their heads and get on with it.
Then, there is the mama-bear instinct to channel or suppress, whatever the case may be. The world is a cruel place, and Mom had to come to terms with the fact that not everyone wanted to make that world easier for me. She had to learn that we live in a world where a teacher could tell her, to her face, that she should be grateful I was allowed to go to school at all. She had to listen to me cry while dealing with accessibility issues and unsympathetic educators, all the while knowing that this was the new normal. She was forced to stand by while a potential employer refused to hire me solely because I would be defenseless against armed intruders (yes, that is the excuse they used). She had to understand—and I imagine this is an ongoing process—that my life was going to be a little harder than it should be, and that she could not shield me. Instead, she’d have to let my independent spirit do the shielding, while offering support from the sidelines. There is a time to be your child’s fiery advocate, and a time to step back and let her figure it out. It’s a hard lesson to master.
There is so much we owe to our mothers, whether we are disabled or not. While all mothers have plenty of trials to face, I believe mothers of children with disabilities, illnesses, and other traits that make them seem abnormal to the rest of society have an especially heavy load to bear. Mom gets extra points for dealing with me; sadly, I can’t blame my difficult daughter status on blindness, as convenient as I’d find it.
So thanks, Mom, for shouldering all of these things while managing to treat me like a “normal” kid, and raising my sighted sister at the same time. Thank you for putting up with my grumbling long enough to make ponytails and take me clothes shopping and all the other unspeakable tortures about which I was so vocal. Most of all, thank you for keeping your head up when society wasn’t kind. Being a mother is tough when all the odds are with you, and you didn’t have that luxury.
Happy Mother’s Day, Mom.
If you haven’t yet done so, give your mom a call and thank her for whatever special gifts she’s given you over the years. Moms like it when you call.
Where's Your Dog? 