Guest Post by Elise Johnston: Guide Dog Gaps and Anxious Hopes

For many blind people, the gap between guide dogs is something to be dreaded. Retiring a dog is a devastating life event, especially if it happened earlier than expected.

For Elise Johnston, the early retirement of her second dog was a little more complicated. In theory, getting on a waiting list for a new dog as quickly as possible made perfect sense: Her mobility was drastically curtailed without a dog by her side, and getting repeatedly lost on the way to work was getting old, fast.

And yet, even with all the logic in the world pointing toward ‘new dog,’ Elise found herself frozen, as much by indecision as harsh Canadian winter.


Winter 2019: To Dog or not to Dog

So it’s February and, because I am an unmitigated genius with an IQ almost as big as my shoe size, I have retired my second guide dog early. For the first time in more than 15 years, I am using a white cane on a daily basis.

People ask me about getting another dog, and my frozen Popsicle brain offers up a gloomy “No.”

On the face of it, ‘no dog’ makes no sense whatsoever. It’s February, as I say—February in Alberta. It’s so cold that pipes in a downtown hotel have frozen and burst, turning the surrounding street into a skating rink. I’ve started a job in a new building and am only slightly familiar with the root, which includes a convoluted street crossing, and requires laser-precise positioning to make it onto the correct sidewalk.

Gobs of white ghost poop are piled in drifts over all the tactile landmarks. The wind is singing an off-key lament passed my toke-covered ears, obliterating any sound cues, like the audible signal that marks the crosswalk. Memories of being knocked down by a car, which then stopped directly on top of my foot, flash through my frosted-over brain.

My first guide probably saved my life, not with expert car blocking skills or anything, but because he made navigating university possible, given the lack of orientation and mobility training available where I live. And having university to escape to after high school was unquestionably life-saving.

My second guide gave me the confidence to move out on my own, live independently, and get to all the appointments one needs to get to when one is gender transitioning. You could say he saved my life too.

I love dogs. I love the flapping of their ears when they shake themselves, the thump of their tails on the wall. I love giving tummy rubs and getting kisses. Dog hair is a condiment I have no objection to.

But now, ice-cubed and tearful, after being lost yet again during the coldest February on record, I have big problems with getting another dog.

Spring 2019: What We Don’t Talk About When We Talk About Dogs

You go to a job interview and the first five minutes are spent, not discussing your qualifications, but the life history of the dog that accompanies you.

You walk into the kitchen at work and the coworkers gathered there wish your dog, not you, a good morning.

You retire said dog, and when you switch positions the boss in the new position goes, “Oh dear, where’s your dog?”

A dog is novel, and cute, and lots of people like dogs. You, on the other hand, are an icky blind person.

“I have nothing in common with an icky blind person,” says (insert person). “Better just talk to the dog, or about the dog, or tell stories about my own dog.”

You tell yourself: You’re having so much fun without a dog. Sure you wake up at night and listen for the breathing that should be there. Sure you can only pet your sweaters. Sure it’s much harder for you to go places since you don’t have regular access to mobility training. But being upstaged all the time? Having to deal with incessant questions? Giving one of your best friends a hug and listening to her sneeze for hours because of her allergies? Making friendly with people who are besotted with your dog for no good reason other than its “OMG a dog!”

Also, dogs can be inconvenient at sleepovers. They require attention and extra executive function and vacuuming.
And having a dog, loving a dog, means one day you have to say goodbye, and your heart becomes a chew toy that they’re squeaking, squeaking, and suddenly not squeaking because they’re not responding to the antibiotics for their pneumonia and their cortisol levels are sky-high and your family has asked you what you want to do…

Do you want to get another dog? Really?

Fall 2019: Some Mad Hope (and All the Anxiety)

It’s hard to get a handle on why I submitted my application. Probably it was because one of my best friends has a guide and witnessing their bond and the way they work together gave me hope that things could be different. When I did my home visit with the school I am attending for my new dog, we discussed techniques I had never heard of — simple orientation and mobility stuff that would have made a huge difference working with either of my old guides.

There’s regret now when I think about what might have been possible with my previous dogs. Regret, and a new anxiety about how much I still have to learn. This anxiety piles up on top of the existing anxiety when I think about interacting with people on an exclusively dog-related basis.

Why am I doing this again? Do I like being an anxiety sandwich? Have I surrendered to my fate as auxiliary to a much more adorable creature? Am I using Meagan’s blog as an alternative to talk therapy?

But maybe things really could be different. Third time’s the charm?

Spring 2020: Notes From Elise’s Future Dog

You know what’s relentlessly awesome about being a guide dog? It’s having someone who appreciates everything about you—who endures home interviews and goes on waiting lists and rearranges their life so you can be on their team. It’s knowing someone loves you for your brains and not your body. It’s knowing that, while your handler doesn’t love everything about being with you, it’s all worth it in the end.

Sighted people won’t shut up about how beautiful I am. They’re always going, “Oh look at the beautiful dog!” Nobody except Elise goes: “Seriously why don’t you join MENSA?”

I get to go for lots of walks downtown where there’s always interesting stuff going down, like political marches and half marathons and shady drug deals and gay couples walking their cat. Also also,
Elise knows all these totally-good smelling people who are by default my best friends because they’re her best friends.

The other day I got to meet Elise’s retired guide dog, who is kind of an idiot, and he told me that Elise goes on adventures to hospitals and writing conventions and vegan restaurants, which sound like good fun to me! He also warned me sometimes Elise has trouble getting out of bed or off the couch, in which case it’s my job to pretend like I have to go to the washroom really bad, even if I don’t, or to stick my nose underneath her blanket and give her kisses, especially on her bare feet.

I mean, I was going to be a guide dog anyway, and I think I could have done a lot worse. Elise doesn’t drink or smoke or listen to music at obnoxious volumes. She’s done all the boring university already. I feel like she’s finally kind of sort of got her life unstuck and can focus on the cool.

We’re going to go new places and smell new people and chew on new bones and I’ll probably end up saving her life down the road, just saying.

Life is short and that’s why it makes a difference who we spend it with. Am I right? Am I a good dog?


Looking for more? Check out Elise’s previous guest post on gender transitioning as a blind person: “Smart People, Stupid Questions, and Knowing What We Cannot See.”

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.

Meagan and her husband face each other, smiling and holding hands. She wears an ivory mermaid-style wedding gown covered with seed pearls. A veil is pinned over her hair. He wears a black tuxedo. A wooden archway, decorated with flowers, is in the background.

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, wearing a colourful summer dress and tall black boots, smiles as she touches soft, fuzzy leaves. Purple petunias are visible in the background.

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.

Cooking My Way Toward Confidence

I’m not much of a cook. I’ll get that out of the way first and foremost. You’ll never catch me humblebragging about my culinary adventures, and my best recipes come from Google. I’m far better at googling than I will ever be at cooking. In fact, part of the reason I fell so immediately, intensely in love with my better half was that the man could cook, and I was in desperate need of a healthier relationship with food. Fiercely independent as I was, I was ready to let someone feed me, and he did so with relish.

I have a tower of excuses for my abysmal cooking abilities. I don’t have the time (I often do), or the spoons (I sometimes do), or the know-how (which I could probably learn if I applied myself, let’s be honest).
The real story is a lot less sympathetic. Simply put, cooking is scary for a blind person who lacks confidence during hands-on tasks, and I’m one of them. I’ll write you a set of speaking notes in less than an hour, for an event I’ve never heard of, on a topic I know nothing about. That’s juuust fine. But please don’t ask me to do anything with my hands other than write, play the piano, and carry your stuff.

“But Meagan,” you insist, “surely you’re overthinking this! It’s not that complicated.” (You’re right. Congratulations.) Special training is not strictly necessary, and the majority of blind cooks I know are at least partially self-taught. It’s tricky, but it’s not arcane.

And yet, the chronic diffidence persists, and it didn’t originate with me. For as long as I can remember, sighted people have been all too happy to enumerate the disasters that might befall me. Knives can’t wait to chop off those precious fingers that help me read and use my cane. Boiling hot liquids are just waiting to terrorize me with much spattering and spilling. Grease fires lurk around every corner, poised to consume unsuspecting paper towels. Measuring is messy. Preparing dishes without visual input is imprecise. Whatever I make probably won’t be perfect. (The horror!)

And so, being someone who fears messes almost as acutely as I fear failure, I stayed out of the kitchen unless compelled to do otherwise. The years I lived alone meant I subsisted on an insipid rotation of frozen dinners, canned soup, and snack foods that lacked nutritional value but quieted my hunger. Every now and again, when I wasn’t busy studying or writing papers in a feverish haze, I’d throw together a salad or heap a random assemblage of ingredients in my slow cooker and hope for the best. My standards were low and I was frequently too ill to eat at all, so this worked for me … for a while.

Once I started working full time and transitioning to “real” adulting, I began longing for more in nearly every facet of my life. I wanted to travel more, socialize more, and acquire the grownup skills I thought I ought to have picked up years ago. My student days were marked by severe migraines and appetite-killing pain, and I was mostly too ill to notice I was living a small, sad existence. Now that I was blossoming, really learning to thrive, I felt I should take the act of cooking more seriously—for my health, if for no other reason. And there they were, my faithful, time-worn excuses.

But this time, there was a new element: my afore-mentioned better half. He didn’t have a lot of time or energy, either, but when he did, he’d prepare delicious meals for me and, eventually, for our friends. Nothing made me prouder than a group of my loved ones sitting at our kitchen table, exclaiming over his prodigious talent. There was immense satisfaction in the act of nurturing people, of bringing them together through the medium of food. An ongoing source of suffering in my life has been the perception that I have nothing to offer. No one needs me, I can’t be counted upon, and I will never make others feel cared and provided for in the ways so many have done for me. It’s a common and heartbreaking reality of disability, which very few of us escape entirely.

But bearing witness to the magic my partner could call forth by simply whipping up a meal and inviting people to our table made me question those long-held assumptions about myself. Perhaps I really was capable of nourishing others as they had so often nourished me. Watching him at work filled me with such an expansive, buzzy feeling of well-being that I decided it was time for me to be brave and turn these one-man meals into a team effort. I wanted to do more than stand on the sidelines of his generosity—a generosity I shared but couldn’t easily express. I wanted to help make it happen.

I’m still a bad cook. (What’s that? You thought this would be a story of radical transformation? Triumph over adversity? Sorry, wrong blog.) I’m not sure that will change, though experience will help me hide it better. What I do have is patience, inspiration, and determination to improve. I also have a partner who appreciates every contribution I make, whether it’s researching recipes or taking care of the food prep he finds unendurably dull. He knows I have a long way to go before I’m satisfied with my skill level, but he is happy to celebrate the baby steps between where I am now and where I want to be. The pure, unbridled joy he takes in those baby steps gives me the space and freedom to celebrate them, too.

With every meal we coordinate together, with every recipe we choose and every cozy conversation that plays out over our cutting boards, I feel my confidence building and, more and more now, a growing closeness not only with the partner I cook with, but the people I cook for. Showing love in words has always been easy, but showing that love with my hands was always an epic struggle. Now, with practice, I am learning to embrace the work of my clumsy, imperfect hands as a pathway to enhanced self-worth and a better relationship—with myself, my partner, and my loved ones.

The cherry on top of the sundae? I haven’t yet managed to chop off any fingers or start any grease fires. (I’ll just have to try harder.)

TLDR: If you’re looking for a way to bring more big buzzy waves of well-being into your life—and really, who isn’t—cook for yourself. Cook for the people you love. If you can, cook right alongside those people, even if the thought of others watching you work is uncomfortable.

Running low on spoons? Don’t have enough time in the day? Scared you’ll mess it up? Do as much or as little as you feel you can. I promise you that whether I do the heavy lifting for a meal or merely slice a carrot or two, the happy buzzy vibes show up either way. It’s the sense of competence and collaboration that matters, not the volume of work done or effort made. The benefits of cooking for yourself and others are endless, and you can’t go wrong with a little extra confidence now and again. I learned that the hard way, so you don’t have to.

Breaking: Voting Blind is Still a Mess

I remember the first time I voted in an election—Alberta’s last provincial election, in fact. I wasn’t sure what to expect, but I’d been advised to anticipate, well, just about anything. Some blind voters wove enchanting tales of gloriously accessible experiences: knowledgeable volunteers, helpful Braille overlays to make paper ballots accessible, and plenty of dignity for everyone. (Yay!) Other visually impaired voters described confusing polling station layouts, bewildered election officers, and ballots that were impossible to fill out independently. Since I was voting via a mobile polling station on my university’s campus, I had no way of knowing what would be waiting for me.
The experience was about as bad as it could have been, I’m sad to say. If I hadn’t happened to run into a sighted friend on my way to the polling station, I would have been totally demoralized by the disorganized space and baffled volunteers who were supposed to be managing things. I could tell they all meant well, but no one seemed sure of how to handle the situation. Indeed, one of them made a phone call, pleading for help: “What am I supposed to do with a blind person?” (She … she really couldn’t think of another way to put that?)
In the end, after much table-shuffling and whispered conversation, it was decided that my sighted friend should fill out my ballot for me. No one present, besides the friend in question, offered to assist me; I believe they figured I’d intentionally brought her along for that very purpose. There was no formal procedure, no consent form or oath of any kind, and the entire rigmarole took so long I was beginning to sense I was holding up production with my pesky access needs. The experience was so unpleasant it took a lot of courage to vote in the federal election that came soon afterward. As this post points out, Elections Canada didn’t have their act together any more than Elections Alberta had. Voting may have been my sacred right under democracy, but standing among those frazzled volunteers, I felt as though I were asking for the ocean in a cup.
Today, I voted in the 2019 Alberta provincial election, hopeful and eager to give the process another shot. Friends who’d voted in advance polls claimed their experiences had been considerably more encouraging this time around, and I thought I might get lucky. I was also excited to vote in a regular polling station rather than a mobile one, which might have better-trained elections officers. A girl can dream! However, I did bring my partner with me, just in case. That turned out to be a sound decision.
For the most part, things went well this time. The polling station had adequate signage, and seemed well-organized. There were people stationed near the entrance to help voters find their way, and everyone I interacted with seemed competent and self-assured. I got the impression that these people were working together like a well-oiled machine, which I found reassuring. In general, I can’t fault anyone working at this polling station, and I believe the inconsistencies I’m about to recount were down to incomplete training and preparation.
My partner and I approached the voting table, only to be told that the sole work-around for filling out my ballot was to request assistance, either from an officer or from my companion. The officer we dealt with was unfailingly kind, but obviously nervous. He frequently directed questions to my partner instead of me, and I had to work hard to redirect him. He seemed so uncomfortable with the whole procedure that, after listening to his halting explanation of how to complete the special declaration form, I knew I’d not be leaning on this well-meaning but flustered stranger—not when an alternative was available, anyway.
First, my partner read and signed a brief oath swearing to provide assistance to me. Then, the elections officer signed as a witness. I waited, assuming I’d also be asked to sign, seeing as I was giving official permission to let another person cast my vote for me. Surely, something of this gravity would require my explicit consent.
Nope.
Immediately after signing as a witness, the officer waved us behind the table, and my partner filled out ballots for us both. I trust him without reservation, of course, but it all felt a little too easy, too casual, for my liking. Before I knew it, my partner was handing both our ballots back to the officer to check, and I didn’t even get to place my own ballot in the slot. And the lack of a Braille ballot—a low-tech overlay that’s easy to produce and easy to use—was still bugging me as we walked away from the table.
As soon as we left the station, my partner burst out: “I can’t believe they didn’t make you sign anything! It’s your vote! That doesn’t seem right.”
Perhaps it didn’t seem right because, according to this summary of the Election Act, it wasn’t. The summary states that according to the section on voter assistance, both the person providing assistance and the disabled voter must take an oath. For whatever reason, that was either excluded from the declaration we were given, or a separate form wasn’t provided at all.
More interesting still, the act goes on to specify that a visually impaired voter can use a “voter template,” which I assume refers to a Braille and/or large-print overlay, if they don’t’ want to be assisted by anyone else. The language seems clear, but if there was any kind of template designed to help me, no one knew about it. As always, the incredible inconsistency of the process obstructed proper accessibility, even though the language in the Election Act is unambiguous.
All in all, things could definitely have been worse. I had a partially sighted person with me to curb some of the awkwardness. The officers were respectful to a fault. The station was easy to locate and even easier to navigate. I enjoyed the atmosphere and made sure everyone knew I appreciated their service.
But, considering how important it is that elections be fair and accessible to all, our provincial and federal agencies have a long way to go before every disabled person can expect a dignified, consistent voting experience.
I tolerate messy processes in every other area of my life, and I try to do so with grace because life is busy and we’re all doing our best with what we have. When it comes to voting, though, I think I can reasonably expect better.

I Don’t Want You to be Grateful

I don’t want you to be grateful that you don’t have my life. I want you to ask yourself why it’s so hard, why it’s so unfair, and what you can do about it. I want you to see the barriers—the inaccessible environments and the crushing weight of low expectations—and realize that, without these roadblocks, it wouldn’t be quite so hard and unfair. I want you to know that I wasn’t put on this earth to encourage you to appreciate what you have. I want you to understand that, in a more inclusive world, there would be little need to look at a disabled person and think, “Thank God that’s not me.” I want you to know that through the smallest acts, you can help make that happen.

I don’t want to inspire you. I want my ordinary actions to be just that: ordinary. I want to be more than a motivational meme or symbol of struggle. I want you to see me, not just the white cane, the dog, the wheelchair, the diagnosis, the brain or the body that doesn’t work exactly like yours does. I want you to admire my strong points without erasing my weak ones. I want you to stop attaching “for a disabled person” to every compliment you pay me. I want you to see my talents and charms, my flaws and my quirks—the things that make me every bit as human as you.

I don’t want you to tell me you’re my ally. I want you to show me. I want you to model that care with your actions, your values and your votes. I want you to describe your photos and call out that friend who’s always complaining about the “handicaps” on welfare. I want you to ask why that new restaurant doesn’t have an accessible entrance. I want you to recognize that a thousand social media posts can never equal an in-the-moment act of kindness. I want you to accept that how you make me feel is far more impactful than what you tweet.

I don’t want to be in your diversity poster, your diversity working group, your diversity brochure. I want to be consulted for practical solutions, not publicity stunts—because my time is worth more than that, and so is yours. I want you to seek my feedback not because the optics are favourable, but because my perspective is of value and I have something to offer you. I want two-way streets. I want to help move things forward, but I can’t do that while I’m sitting at the token table.

I don’t want to make you a better person. I want to increase your awareness and deepen your understanding. I want to point you toward opportunities for growth and education. I want you to be part of the solution. I want you to stand beside me as my equal and my ally, not because it makes you a good person but because better treatment of disabled people makes good sense for everyone.

I don’t want your charity. I want you to hire me. I want you to rent to me. I want you to let me take your class. I want you to be the patient or the client or the customer who doesn’t flinch when a disabled person walks into the room. I want you to trust that I am suitably qualified and that I will meet your standards. I want you to be comfortable with the concept of working, productive disabled people. I want you to wonder why there aren’t more of us.

I don’t want you to be my voice. I want you to acknowledge that I have my own voice. I want you to amplify it, bring it to the ears of those who wouldn’t otherwise listen. I want you to help the world understand that I am not, and have never been, voiceless. I want you to refuse when you are asked to represent me. I want you to point in my direction when someone asks, “What does she think? What does she need?” I want you to step back, because I am my own best advocate. And when the world asks you to speak for me, I want you to pass the mic, because my story is mine to tell.

The Year of Eating Fire

“The only way to do it is to do it. … There is no trick. You eat fire by eating fire.” ~ Tessa Fontaine, The Electric Woman

An inspired, fresh-start feeling comes to most people in January, filled with promise and hopeful resolution. By late March, many of us realize our goals feel far less attainable when not bathed in the glow of New Year motivation. By the end of the year, only the extraordinarily disciplined remain standing.
In my case, motivation came calling in springtime, in late March of last year. January and February had trudged by in a haze of inertia. My job had hit a dead end. Chances seemed slim for finding another. My lack of disability-related skills was weighing on me more heavily than ever, and my desire to hide from those who might look down on me left me frozen. Time had failed to pull me from my rut, and fear, not to mention despair, was taking over.
And then came CSUNATC—a tech accessibility conference in California that was, by the grace and generosity of a dear friend, within my reach. All I had to do was overcome my fear of mingling with the disability community, muzzle my travel anxiety, and say yes. Pretty simple, or so you’d think.
But saying yes to CSUNATC was, for many reasons, one of the scariest things I’d ever done. Crowds aren’t my thing. Travelling terrifies me, as do fellow disabled people. Just to add to the drama of it all, the friend who agreed to be my guide was someone I’d never met in person. It was as though some sinister committee had conspired to invent circumstances that would encapsulate my personal nightmares. All that was missing was a nest of angry insects.
As many of my readers know, I said yes anyway. Clarity pierced my fortress of quiet desperation, convincing me this would be good for me. Maybe it would open some doors, professional and social. At the very least, it might shake me from my funk, and deprive my anxiety of some of its power.
I attended the conference, faced a multitude of demons, and wrote a recap so emotionally vulnerable that total strangers reached out to thank me for my courage. Perhaps it was the sudden change of pace, the audacious decision to publish my failures, or the landslide of goodwill from a community I’d assumed would judge rather than embrace me, but I understood, all at once, that there are no shortcuts to true forward motion. No “one weird trick” or easy lifehack would help me conquer my fears. There was only the choice to say yes, grit my teeth, and do the scary thing. The only way to eat fire is to eat the damn fire, after all.
Buoyed by this revelation, I began eating fire every chance I got. My springtime resolution wasn’t an easy one to keep, but it stuck where dozens of others had failed. To this day, I don’t have a proper exercise routine, and I am incapable of keeping a regular journal. But touching my tongue to flame has become a valued part of my life, if not second nature.
A few months after returning from CSUNATC, I applied for an internship, even though the competition was fierce and I was certain I’d not measure up. (They hired me).
I tried my hand at speechwriting, which a university course had persuaded me I’d never master. (I’m now a full-time strategic writer, crafting speeches for people more important than I will ever be.)
I practiced being more assertive in everyday life, advocating more consistently and experimenting with “No” rather than letting courtesy outweigh common sense. (I’m now rather good at getting people to let go of me.)
I explored intermittent fasting, regardless of how drastic it seemed. Restricting food made my anxiety spike, but I persisted. (I’ve kept it up for months now, and it has transformed my relationship with food, all but eliminating disordered eating along the way.)
I ask for what I want, not because I am entitled to a thing but because if you don’t ask, you’ll surely never get. (I have taken on several side projects at work that would not have materialized if I hadn’t spoken up.)
The ultimate manifestation of my new resolve was a little like metaphorical flaming-sword-swallowing. I reached out to an orientation and mobility instructor who had recently begun working in my city, and asked her to make me into a respectable blind traveller. In just two lessons, I’ve corrected my cane technique—breaking a decades-long bad habit was no mean feat—and have begun to really understand how cities are put together. (I even let her blindfold me, without the debilitating panic I’ve come to expect from blindfold training.)
It sounds straightforward and unremarkable when I lay it out this way, rather like the automatic revolving door that gave me such grief a year ago. But in my world, these were huge steps forward, a series of daunting obstacles, and there was no shortcut to navigate any of them. There was only my choice to say yes, grit my chattering teeth, and plunge straight into the scary thing. Planning is important, and impulsiveness will never be my custom, but there’s a lot to be said for closing your eyes and swallowing that flame down—because while you’re standing still, waiting for the fear to ebb, time has a way of ticking along at an alarming speed.
The upside of regularly staring terror in the face and carrying on anyway is that if you’ve done it once, you can do it again. It may not go the way you hope, but you’ll always have the knowledge that you’re capable of working through fear, and nothing can take that away. My small but mighty triumphs at CSUNATC, and the subsequent support I continue to receive from many faithful cheerleaders, assure me that while I can’t guarantee good luck, I can be brave when it matters.
Skills are great. Experience is useful. A large network is handy.
Courage? Persistence? These are essential.
It may well be that at least one person reading these words is hesitating, waiting, praying for motivation. That person might be you—or if it isn’t you now, at some point it probably will be. More than likely, you’ll face a task so unpleasant, so uncertain, that you’ll retreat into your very own fortress, hoping motivation will spring from nowhere, or that inertia will outlast the fear.
There is nothing I can say to lessen that fear or quiet that anxiety. But I can tell you that I’ve sequestered myself in that safe space many times. While it has occasionally spared me the trouble of confronting that fire, I can promise you it’s never left me better off.
So go ahead: say yes, grit your teeth, and do the scary thing. Whether it turns out well or leaves you singed and disappointed, you’ll still have the knowledge that you can be brave when it matters.

Stumbling on Belonging: A Closer Look at Inclusive Spaces

When people visualize an inclusive environment, they often picture a forced, excessively deliberate atmosphere. Certain topics are off limits. Certain jokes are avoided. Inclusion, in some people’s minds, is a pious concept, wherein the vast majority lose out to put a tiny minority at ease.

But when I have been fortunate enough to stumble upon an inclusive environment—my current workplace is an ideal example—it’s never been joyless or contrived. A lucky convergence of factors makes me perfectly comfortable, long before I realize it’s happening. By the time I become aware that I have found that rare sense of belonging, it’s too late to pinpoint precisely why it happened that way. All I can do is sit back and enjoy it, hoping I find it again elsewhere, and knowing there’s little I can do to reawaken the magic.

In my experience, thesimple, understated inclusionI crave simply can’t be planned, designed, or regulated. For example, at my current job I have all the technology I need to perform my duties, and a harassment policy to protect me from discrimination. There is, however, no mandate requiring staff to show me kindness or invite me to lunch or treat me with such implicit respect that I forget, for long stretches, that I’m any different from them. (It helps that a handful of coworkers have disabilities of their own. Seeing how well they were treated was critical.) Among my colleagues, I am taken at face value to such a degree that when some small mistake or accessibility barrier reminds me I’m disabled, it’s jarring. I spend all day being so effortlessly included that when I step outside that bubble and field someone’s intrusive questions or unwanted assistance, I’m brought back to earth with a painful jolt.

Oh, right. Visibly disabled. People are weird about this. Almost forgot.

For me, authentic inclusion naturally accompanies the people and places in my life that make me feel part of something much bigger—without singling me out or confining me to the diversity table. Fellow disabled people I’ve spoken to agree: there is no consistent pattern, and you can’t always predict the spaces that will trigger this elusive magic. I have found belonging in the most unexpected places, failing to find it where I expect it to be. I don’t necessarily feel most at home with people I have the most in common with, or people in my age group, or even in groups of disabled people. Indeed, I sometimes feel least comfortable around other disabled people, where you might hypothesize I should be most comfortable of all. No—there is little rhyme or reason, and I’ve come to accept that try as we might, we can’t guarantee everyone will belong. We can ensure we’re not freezing anyone out, and we can remove barriers, but that warm sense of welcome demands the right group of people, in the right place, at the right time.

In my favourite spaces, we go ahead and make the questionable jokes, and I am free to laugh because I know I am not made powerless. We may be drawn to one another by our interests, our career goals, or even our proximity; but ultimately, we are bonded by our mutual understanding that I, like everyone else in the room, am welcome. Not simply “included,” not merely “tolerated,” but valued. I am a contributor, not a liability. I am helpful, not helpless. I am an asset to be appreciated, not a box to be ticked or a funding source to be tapped or a quota to be met.

Maybe it’s all seeming a little mystical, but whether you’re disabled or nondisabled, there are small steps you can take that might make a huge difference to the disabled people around you:

  • Take people at face value. If they say they can do a thing, assume it’s true until they prove otherwise.
  • Match your expectations to what you observe, not what you assume. If they seem secure and competent, they probably are.
  • Accept their help when it’s offered. Don’t act as if the assistance can only flow one way.
  • Seek their feedback when planning for their participation. When someone asked me recently which board games I liked to play, rather than asking what I was “able” to play, my mind was blown. For the first time outside my family and friend groups, someone was less concerned with what was literally possible, and more concerned with what I’d actually find enjoyable.
  • Chill. Seriously, juuuust chill. Nothing kills inclusion faster than fixating on the things that make people stand out, at the expense of what brings them together.

So, no, you can’t force the magic. Strong values and robust policies are important, but they’re not everything. You can build all the ramps and design all the accessible activities and overthink it all to death. From what I can see, though, if you want to attract the magic, you change your thinking, most of all. It is as simple and as complicated as that.

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.