Losing Touch in the Time of Coronavirus

So far, 2020 has been the year of losing so many things: The ability to gather guiltlessly, the security of jobs and livelihoods, the assurance that the healthy people you love will probably not fall prey to an unknown virus. Like everyone I know, I’ve struggled with the loss of routine, of connection, of the gift of nonchalance when I wake with a scratchy throat.

Most acutely of all, I feel the loss of touch. By this I don’t merely mean the obvious, near-universal longing for human contact. I’m not talking so much about warm, fearless hugs and handshakes that don’t involve hand sanitizer or the furtive acknowledgement that we’re not really supposed to be doing this, are we? I’m a warm-and-fuzzy, touch-oriented person, and have been known to find touch from strangers, under the right (consensual!) circumstances, to be bracing and beautiful.

But as a blind person, I have lost more than these. I have lost my ability to move through the world with the elegance and precision I once enjoyed, if you can call anything I do elegant. You don’t realize how often you touch things until you are required to wipe them down afterward. In my shared workspace, for instance, I have given up tea, coffee, and even water I don’t bring from home, because it’s just too hard to navigate a common kitchen as a blind person without putting my hands all over everything. When things stay in one place, as they do in my home kitchen, I can pretty much plop my hand down on exactly what I need, no groping required. The rest of the world doesn’t operate with the same dedication to putting things precisely where they found them.

I’m a scrupulously clean-handed person, partially because of all the touching I need to do to find things, but I still feel self-conscious as hell touching anything at all in the time of COVID-19. After many tense conversations with blind friends all over the world, I know I’m far from the only one.

I search for the wipes, which move ten times a day as people use them, only to encounter someone’s discarded mug, a basket of sugar packets, a roll of paper towels, somebody’s oatmeal bowl. These I must now sanitize.

I fumble and wave experimentally into the ether, searching for the hands-free door-opening mechanism I know is there but can’t quite find without making contact with it. Before March 2020, I’d have simply opened the door manually, because that’s far more precise when you can’t see. But now there’s a policy about these things, no touching doors please, so now I’m flailing.

I trail my hand along a row of seats on a bus to find an empty one. I press buttons just to cross the street. I touch a door handle, then my cane, then a railing, then my cane again, then a length of wall to orient myself, then my cane again, and so on, because who has time to stop and sanitize every few feet?

I ask for help figuring out the buttons on a pin pad. I instinctively default to hand-over-hand exploration when someone tries to teach me something new, because touch transcends language barriers and clumsy directions better than any medium I know. I automatically reach out to touch when someone wants to show me their new haircut or cozy sweater or nifty pair of shoes, because that’s a small but meaningful part of how I appreciate the world around me. Then I pull back and blush hard with embarrassment, feeling empty and off balance for a moment.

I ask for an elbow each time I must be guided, and for the first time in my life, this feels like an unspeakable favour to ask, a brazenly selfish and risky request.

“Hi there, may I, a stranger, put my hand on you in the year of plague and terror? Hate to ask, sorry, but my mobility skills aren’t great and this area is totally unfamiliar to me and I can’t keep up with you otherwise. Really sorry about this. Want some sanitizer for your elbow?”

Besides the impact on other people, and the self-consciousness that comes with using high-touch surfaces to orient oneself in an era where the word ‘high-touch’ gives people nightmares, I’m also dealing with the logistical puzzle of keeping myself safe without sacrificing independence. Just how often should I sanitize? How often do I need to wipe down my cane? Is there a hands-free way to do the things I’ve always done by touch, and if so, how safe is it? How can I follow social distancing guidelines when they’re shown using arrows and signage and other things I can’t perceive? If I accidentally bump someone, will they behave aggressively toward me, even if there was no way for me to prevent it? Should I walk around with Ziplocs on my hands? Really lean in to it?

Then there are additional concerns my friends with service dogs deal with, like how do they keep their dogs from getting covered in a bunch of COVID particles? How well will their dogs adapt to social distancing conventions? What if their dogs get infected, which doesn’t seem common but has been known to happen to both cats and dogs? What if someone decides to pet, feed, or otherwise mess with their guide in the middle of a pandemic? Heaven knows propriety, safety, courtesy and basic respect haven’t been adequate deterrents before now. Why would a novel coronavirus change that?

Time and experience will provide me with more answers than I have now. If nothing else, the self-conscious shame I feel each time I so much as brush a counter or chair-back with a fingertip will fade, because I can’t sustain that level of anxiety indefinitely, thank goodness. Many guide dog handlers and fellow cane users have told me they’re feeling more comfortable all the time, and I will, too. One day soon, I’ll memorize the locations of all the hands-free door-openers and no doubt be brave enough to pour myself a coffee at my workplace. Maybe I’ll even convince people to stop moving the wipes, dang it.

Until then, I’ll trot out my favourite refrain since this whole mess began, as much for myself as for you, dear reader. Stretch yourself, even as you feel fear and self-protection, to be extravagantly, abundantly, excessively kind to each other. If you’re disabled and annoyed with this new normal that seems designed, unintentionally but maddeningly, to shut you out and strip you of your confidence, assume there are ways to make things better, and help others implement them. If you’re sighted and feeling icky watching a blind/disabled person interacting with their environment in a way that seems too hands-on for comfort, be helpful and patient, because we’re all confused and none of us has this figured out just yet.

Wash your hands, wear your masks if you can, and stay healthy, friends. And most of all, be good to one another. We’re going through a major global upheaval whether or not we choose to be the best of ourselves through it. We may as well lead with grace.

Your Luxury is My Lifeline: Standing up for Transit in a Driving City

I was shocked when I saw it, buried unceremoniously at the bottom of a news brief where the less important stories end up. My city is considering shutting down transit altogether, for the entire summer, to offset the economic impact of COVID-19. It was later clarifiedthat this is not the only or most likely scenario, but it still hasn’t been taken off the table. Unless aid is forthcoming, the next few months will be long ones for people like me, who are medically unable to drive, and who have no affordable way to get around in a city that was never designed to be walkable outside the downtown core. The article acknowledged the transit worker jobs that are on the line or already lost, but as far as I could tell, no one was doing much advocacy for transit riders themselves.

No service reductions, no Saturday schedules or fare increases. Just a total, blanket shutdown. And paratransit, a specialized service for disabled passengers who can’t always use conventional transit, wasn’t even mentioned.

As a series of motorcycles and extraordinarily loud sports cars roared past my home office window, gleefully proclaiming their ability to go where they please, when they please, pandemic or no pandemic, my stomach dropped to my shoes.

You see, I get it. The service is reportedly losing millions every month. Ridership is down, since far fewer people are going out to work and run errands, though that is bound to change as the economic relaunch progresses. Transit in my area wasn’t in great shape before this crisis, and now it’s on life support, in a ‘driving city’ with what I’d personally characterize as an anti-pedestrian and anti-transit culture.

So on the face of it, the strategy makes sense. Shut down transit during the warmer months, so that when winter comes and walking long distances becomes impractical and unsafe, there will be money to restart the service. It’s not ideal, but if the money’s not there, then it isn’t.

But if this sensible strategy goes ahead, there will be a lot of quiet collateral damage that few seem prepared to acknowledge.

If you live in Edmonton and are unable, financially or medically, to drive, you’d better hope you live within walking distance of your job, or have plenty of disposable income. Short of working from home until the fall or longer, there are a lot of expensive cab rides in your future.

If you were planning to job-search this summer, you’d better hope you have enough savings to afford the cab rides you’ll be taking to interviews, or the mobility to walk across this sprawling city to get to them.

If you are experiencing homelessness, you’d better hope you can walk or find a ride to access the supports and services on which you depend.

If you are disabled and can’t walk/bike/carpool your way around town, you’d better hope paratransit keeps running. Otherwise, you’re on your own.

If you live outside the city, and you need to visit it for work or school, you’d better hope transit services in other communities keep running.

And if you live in Edmonton and are able to drive, you’d better hope you can continue to afford fuel, repairs, maintenance, parking, insurance, registration and all the other associated costs, because there won’t be a bus or train to fall back on.

I don’t have answers. I’m not an economist, strategist or urban planning expert. I don’t know the best ways to keep transit services afloat when ridership is low and revenues are lower. I’m not calling for specific funding, or political action, or any particular solution. I don’t feel qualified to point at something and say, ‘this is what we should do.’ Wiser, more experienced voices than mine will handle that bit.

What I am calling for is awareness – awareness of the precarity of public transit, the diverse population it serves, and the reality that a city without transit is a city without equitable access to opportunity.

Here’s the thing: For drivers, transit is easy to ignore or dismiss. I’ve met drivers who have never taken a bus in their lives, and who claim they never would; they’d cab first. Transit is for ‘other people,’ people who aren’t like them, people they can’t possibly relate to. Why would anyone willingly use it if they have any choice?

I’ve also met drivers who do use it, here and there, but only to avoid parking fees or heavy traffic. For them, it’s a matter of convenience and penny-pinching, not a tool they rely on to get around. If it vanished tomorrow, they’d hardly notice.

But transit is not a nice-to-have. Transit is a lifeline ensuring that everyone can work, attend appointments, go to school and enjoy a rich social life in urban areas.

Transit is the service that, for me and most blind people I know, makes independent living possible. Its availability dictates where we work and live. Chances are, if a community doesn’t have adequate transit, blind people won’t stay for long.

I left my home town, my family, my support system and my local community, so I could build a life on my own terms. It is transit, more than anything else, that has given me that gift. If transit goes, then I will probably go, too.

So please, look up and pay attention to this story, even if you never take transit. Join the conversation, because your coworkers, your family members, your friends may lose jobs and even move away if they lose transit, even for a few months. Realize that in many cities, transit service was already in trouble, already undervalued, before a pandemic came along to make things worse.

This isn’t about one transit shutdown in one city, something you can shrug off and assume to be irrelevant if you don’t live here. This isn’t about fringe benefits or luxuries. This is about keeping people working and living on an equal footing with those who drive. It’s about protecting vulnerable groups, who are always the first to suffer when public services are cut. It’s about making sure everyone can contribute to society, right where they are, no matter their circumstances.

Those aren’t nice-to-haves. Those are must-havse.

Social Distance and Silver Linings

Long walks in the woods are pretty exciting, particularly in a time when going outside at all is a coveted luxury. So when my husband and I explored some walking trails near our apartment on a crisp Saturday morning, I was prepared for that singular invigoration that only trees and birds and green space inspire in me. (Plus, the buzzy, six-legged monsters hadn’t woken up yet. I take joy wherever I find it these days.)

What I did not expect was the exhilarating feeling that I’d stumbled into an alternate universe, one in which visibly disabled people could exist in public spaces without having their service dogs stroked, their canes stepped on, their hands grabbed, their wheelchairs moved. In this parallel paradise, I strolled along, unbothered, while people around me kept their distance politely.

I’ll say this again for the people waaaay in the back: People stayed out of my way, and they helped me stay out of theirs. Nicely. With their words.

Like, without me asking.

Or insisting.

Or pleading.

It got weirder. I also noticed—can you tell I haven’t been out since the pandemic clamped down?—that people were doing useful things like giving verbal descriptions of where they were, which way they were heading, and how best to avoid bumping them.

“Coming up on your left,” said the jogger, giving me ample time to move out of her way.

“Coming up on your right,” said the cyclist, ringing his bell in an uncharacteristically helpful manner as he whizzed by.

“Wow, I love her hair,” said the random stranger to my husband, speaking right over my head as usual. (Some things don’t change, not even during global pandemics.)

We spent about an hour on the trails, encountering many others as we went. My husband and I were both nervous, since my vision is useless and his isn’t perfect. Would people keep the required two metres away? Would we have to swerve to avoid others? Would anyone be paying attention but us?

Our worries weren’t as irrational as they may sound. An environment in which the average person doesn’t keep their distance, doesn’t respect personal space, is what I have learned to expect. It’s what many people with visible disabilities expect, so much so that angry posts about being grabbed by strangers on the sidewalk, on the escalator, on the bus, in the workplace are banal at this point.

This strange new world in which everyone cultivates self-awareness while they’re out and about, in which it’s not okay to touch someone, disabled or otherwise, is not something I’ve experienced before. It’s something I’ve asked for, repeatedly. It’s something I’ve tried to explain to countless folks, many of them as baffled at the end as they were at the beginning. It’s something that gets people saying defensive things like ‘I’m just being nice,’ and ‘I’m just helping.’

It took a pandemic, it would seem, to hammer the point home. Now that people live in fear of unsolicited touch, they stay away. They use their words. They shudder at the very idea of being grabbed out of nowhere on a street corner, or of doing the grabbing themselves. Who would do a thing like that in these times?

Now they get it. Sorta.

As many countries around the world sketch out relaunch strategies, people are asking each other what will change after COVID-19 has run its course. They talk about social changes, political recalibrations, a more compassionate, evolved society, or one that collapses altogether.

I don’t pretend to know what the world will look like when this is done, nor do I know how subsequent waves of the virus will affect a population that is already traumatized and grieving.

For my part, I can’t wait to be able to gather again, to shake hands without anxiety, to hug my loved ones. But if we can hang on tightly to the habit of deliberate physical distancing, especially out on the street, I think many disabled people will move through this world with a lot more confidence. I know I will.

Dreaming of a Quiet Christmas

Last Christmas, I gave you my—

Okay, let’s try that again, sorry.

Last Christmas, my family did something we’d never done before: We skipped the boisterous Christmas Eve crowds and had a quiet evening at home. My nephew had been born just a few days previously, and it didn’t make sense to hit the Christmas party circuit just yet. The six of us lounged around watching movies, playing board games, holding the sleepy baby, and petting the cat.

We could have been making merry with a few dozen relatives, surrounded by noise and general jollity. We could’ve juggled three conversations at once, laughing until we ache, but instead we sat quietly together, doing nothing of particular note.

Readers, it was glorious.

At least, it was for me.

It feels silly to admit it, but I didn’t know Christmas could be like this—cozy and intimate and low-key. Besides a few awkward Christmases among an ex’s scattered family, I’d never experienced holiday festivities that weren’t loud and chaotic. I’d never known a Christmas Eve that didn’t involve confusing buffet meals and houses so crowded we were stacked on each other’s laps like sets of folding chairs. The very essence of the holidays was wrapped in full-volume, full-house, full-throttle enjoyment, with a sprinkling of excitable children in the mix.

It was fun, sure, especially when I was a kid. But I’ll admit this too: It was exhausting.

When you can’t see well enough to navigate crowded environments, can’t handle noise well, and can’t “extrovert” for more than a few hours without depleting your energy, the holidays are anything but vacation-like. Generally, I socialize with more people than I can handle, while surrounded by more noise than I can physically tolerate, all while struggling to guard my Christmas spirit and avoid disappointing people with my failure to bring the cheer.
Attending Christmas drinks with colleagues at an incredibly loud pub hammered the point home: I am simply not wired for traditional expressions of celebration. My idea of a good time is a very small (or at least very well-known) group sitting in a familiar, clutter-free space, preferably engaged in loosely structured activities that accommodate my blindness without aggravating my migraines.
Being in a large, crowded, less-familiar space, immersed in the din of conversation, compromises my ability to do fun party things like:

  • grabbing my own food or drinks,
  • initiating conversations with people other than those directly next to me,
  • moving to other areas to see what people are up to,
  • playing common party games that rely on sight, and
  • making my own way to the washroom when I need it.

“Well, Meagan, this is simple,” you say, “because you can just go home when you’re done, right?”

Going home a bit early Is made difficult when most Christmas parties I attend are in rural settings where Uber isn’t available and walking isn’t an option unless I’m okay with a multi-day hike. Of course, since everyone around me seems to love the party atmosphere, no one else is ever ready to go home when I am.

Ever determined to be my best self, I power through, well past my usual tolerance, and end up dealing with increased pain and fatigue over the remainder of the holidays. The spill-over effect from pushing past my endurance at one party will affect my enjoyment of the others, and I come back to work feeling as though I spent my Christmas vacation writing rush speaking notes while deadlines loomed over my shoulder.

Despite adoring my family and being a huge fan of holiday cheer, I find myself worrying about Christmas celebrations with increasing intensity. I won’t be heading home for the holidays for another week, but I’m already feeling tired just thinking about it.

So I’m dreaming of a quieter Christmas. I’m dreaming of a Christmas where I parcel out my social activities more carefully, where I learn to say no to some things so I can say yes to others, and go easier on myself if I’m just too stressed to muster that full-throttle enjoyment I wish I was feeling.
I’m dreaming of managing all this without hurting a single feeling or disappointing a single soul.

I’m dreaming of a holiday that actually feels like one—peaceful as well as joyful, and relaxing as well as merry.

Maybe, with some planning and boundary development and a little bit of courage, I can have a quieter, calmer Christmas that is kind to my body and easy on my poor beleaguered brain.

You know, since I’m dreaming and all.

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.”

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?”

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.

Lightning, Molasses, and the Search for a Happy Medium

It doesn’t take long for new acquaintances to notice that I operate at a quicker pace than most. I eat quickly, talk quickly, walk quickly (when I can safely do so), and get through tasks with a speed that stands out. I’m not sloppy, and I don’t like cutting corners, but there’s no denying my inner rhythm is a little out of whack. Sometimes it’s handy, like when clients praise my impressive turn-around time for assignments. Other times, it’s awkward, because when people ask, “What’s the rush?” I have no satisfactory answer for them. All I know is an austere, unforgiving clock has taken up residence in my head, and I can hardly think for the ticking.

I wasn’t always so frantic about everything. When I was little, I was frequently reprimanded for being the last one—the last to finish my dinner, the last to straggle outside for recess, the last to pack up my backpack. My punctuality wasn’t usually an issue, but I did tend to take more time than average with hands-on tasks where my agile little mind couldn’t save me. Give me an abstract problem to solve and I was a bolt of lightning. Hand me a pile of papers to organize and I was a pool of molasses. If the task required work-arounds to accommodate my blindness, that pool froze solid.

Somewhere along the way, I internalized the idea that I should always be in a tearing hurry. Part of it can be blamed on patchy time management skills that only improved with adulthood, but a lot of it can be traced back to my frenetic childhood environment.

“Hurry hurry,” grownups would chide, as I freed a stuck zipper or hunted an object I’d dropped. Never could I keep up, and even when I managed to accomplish something in a timely fashion, it was likely that I’d messed it up. The faster I moved, the clumsier I became, and my anxiety clamped down with crushing force.

Buffeted by duelling forces that insisted deliberate movements were bad but mistakes were also bad, I surrendered to a passive paralysis that froze me in place, unable to rush through tasks or tackle them at a pace that suited me. When you’re convinced that nothing you do will please those around you, standing in place seems safest, and that’s often what I did. Anxiety was mistaken for stubbornness, and I developed a reputation for being the kind of person who would stand gleefully by until someone else did my work for me. This couldn’t have been more off base, but I had neither the guts nor the eloquence to communicate that, and figured no one would listen if I tried.

Most kids would have dealt with this situation by learning by observation, asking questions, and/or finding trusted adults to fill in the gaps. I responded by nurturing an intense fear of failure, to the point where even minor errors seemed apocalyptic. Of course I cried when I got a mediocre grade or tripped in public; I genuinely believed the world was ending, and that judgment, when it came, would be swift and harsh. The vast majority of people in my life would have been horrified by the intensity of that fear, and would have done their best to set me straight. For whatever reason, I kept silent about it, and moved out on my own with the debilitating philosophy that doing something badly was infinitely worse than failing to do it at all.

For a while, I was able to coast along, with no pressing need to question this shortcoming. Eventually, however, after I realized I couldn’t even get a little turned around on my way to the grocery store without hours of brooding, I understood that if I didn’t learn to embrace my inevitable failings, I’d never get anything done. Learning by trial and error is one of the most powerful tools at a disabled person’s disposal, and it was vital that I teach myself to be comfortable with falling off the horse and clambering right back onto it. If I carried on believing that a job imperfectly done was not worth the effort, I was going to find the world an exceptionally inhospitable place.

Five or so years later and this demon is still with me. Every time I make a mess or move ungracefully, the urge to disappear overtakes me. Getting lost still feels like the worst-case scenario, and I hate to cook a new dish in case it doesn’t turn out. I’m still watching my disabled friends treat failure like an old friend or benign annoyance, wishing I could be so relaxed.

On the sunnier side, I’m making progress. When I learned during my first mobility lesson in years that I had been using my cane incorrectly my whole life, my reaction was a fierce desire to kill a decades-long habit and do whatever it took to improve. I didn’t dwell on all the ways others had failed to teach me the right way, nor did I fixate on all the people who must have noticed and thought less of me. Even one short year ago, I’d have collapsed in shame. I never would have responded with a mulish refusal to let my mobility journey end there. Getting lost is still the horror of horrors for me, but once I master proper cane technique, my next project will be to get good and lost, on purpose, repeatedly. I doubt I’ll ever enjoy the process, or intentionally seek out new routes just to challenge myself, but I can at least rewire enough to see failure as a bend in the road instead of a stop sign.

All this scares me silly. I could pretend it’s invigorating, that it feels like my world is opening up, but that would be disingenuous. Mostly it’s making me want to crawl in a cave where no one can find me. It’s not fun, it’s not an adventure, and it’s likely to be something I’ll struggle with for the foreseeable future.

There’s this, though: growth hurts. Growth is hard work, and it’s frightening, and if you’re entirely comfortable, then you’re probably not progressing. It’s lovely and warm here in my comfort zone, but I’m finally getting tired of the run-freeze-run pattern I’ve created. I’m content and confident enough, at long last, to think less about survival and more about joy. That means facing those demons with courage and—yes—a little stubbornness.

My unsolicited advice to you? Slow down, and let the people in your life do the same. Encourage people to try (and fail) on their own. Give everyone, kids and adults, the space to be independent, even if it’s faster or more efficient for you to jump in. Kids, in particular, may fight you on this, but unless an adult has asked for help, stand your ground. Take it from someone who knows all about it: they will thank you. The gratitude may not come right away, but I promise you it will.

And if you take nothing else away, remember that as rushed as we all are these days, there is almost always time to let someone learn.

The World is a China Shop (but I am not a Bull)

One of my earliest memories is of committing, as many people call them, a random act of blindness. I was navigating one of those stores not designed for most humans. You know the ones: narrow aisles, delicate displays, teetering piles of items just begging to be toppled. My cane bumped something made of glass, which promptly shattered with what I felt was an unnecessary amount of drama. Immediately, my parents began apologizing as a staff member swooped down on us, sweeping up the pieces and saying very little. Maybe it was my parents’ reflexive need to apologize for my blindness, rather than focusing on the actual damage done, or the woman’s tight-lipped refusal to reassure, but the shame was instant and pervasive. Even as a very young child, I knew enough to realize I’d done a terrible thing, well beyond the realm of typical childlike troublemaking. I had drawn attention to myself and my fundamental differences. I had not been careless, though I’d certainly broken things for that reason before. I was not touching objects I shouldn’t, nor was I being especially rowdy. In fact, I was doing my best not to brush up against anything at all, aware that we were in a sacred-seeming place where impeccable behaviour was paramount. This had happened because I couldn’t see; because I was different; because I couldn’t control my impact on the world as rigidly as other kids could.

As I grew, I witnessed enough nondisabled people knocking things over and making messes to learn that what I’d done in that cluttered store was very human and very normal. All around me, people spill food and knock over their drinks. When they cook, food splatters. When they go into a badly designed store, they displace items just by walking past them. How many times have I stepped carefully around messes while out and about? It happens. People make mistakes. The world is an unpredictable place that is rarely designed for the maximum comfort of its population. Clear paths and barrier-free environments don’t seem very common, even though everyone would benefit from them. We are all living in a china shop, and we are all of us bulls at some point.

And yet, concerned strangers continue to treat me with fear–not only for my safety, but for theirs.

“Watch what you’re doing with that cane.”

“Are you gonna hit me with that thing?”

“Hold on, hold on, I’ll get out of your way!”

If you want to make someone feel like a cross between a fragile doll and a rampaging rhinoceros, say things like that. Bonus points if there’s a child involved.

The shame persists. I knocked over a plant at work this morning, which was perched on a window ledge. A casual sweep of my hand wasn’t enough to locate the obstacle, and when I set my backpack on the ledge, as I do at least once a week, the plant fell to the floor, pieces of its wooden stand skittering noisily into a corner. The whole affair was loud and humiliating, , and when I told a fellow blind friend about it, she shared my disproportionate shame.

“So I knocked over a plant this morning. I committed plantslaughter!”

“Noooo! Not plantslaughter! I think I would have died of embarrassment.”

“Had death been an option I might have considered it at that moment.”

Of course making messes and destroying someone else’s belongings is embarrassing. I think most people would find it so. Few would walk away from such an incident without feeling a twinge of guilt.

But as I poured myself a coffee, reassured that the plant would survive, that old familiar shame returned. I was a bad, careless blind person. My colleagues would think I couldn’t be trusted. I should have double and triple-checked that window ledge. How would I ever be taken seriously if I carried on this way?

Clumsy.

Awkward.

Unprofessional.

At some point, my more rational side piped up: wasn’t I being a wee bit hard on myself here? Was all this self-flagellation appropriate? I knocked over a plant, which wasn’t supposed to be there anyway. I didn’t harm anyone, or murder a puppy. I knocked over a precariously positioned object, I apologized, and I got the mess taken care of right away. I apologized some more. How was this situation different from when nondisabled people knock something over?

It wasn’t. Perhaps a sighted person would have seen the plant and been more careful, but perhaps they would have missed it in the dimly lit room, or been too distracted to notice. The absence of disability is no perfect shield against mistakes, and sighted people are not inherently graceful. If anything, I am slightly more cautious than the average person because I know that any error I do make may be misinterpreted. White canes and service dogs are sometimes identified as health and safety issues, which functionally means that the person using them is also a health and safety issue. Someone to be feared. Someone to be planned for. Someone to be managed.

I will never be comfortable with making a mess—social anxiety will make sure of that. I don’t enjoy disrupting my environment and I’ll always connect such disruptions, at least tangentially, with my disability. I will probably always apologize a little too profusely.

Next time it happens, though—and it will happen—I’ll think back to this moment, where I realized that I was making afar larger fuss than anyone around me. My unwarranted reaction, far from doing damage control, made it more likely that someone would alter their view of my professionalism and competence. Better to simply apologize, take care of the mess, and give myself the same grace I so easily give to everyone else.

I hope you will think back to this, too, and I hope you will give yourself a little grace.

Wait!

“What’s it like, being disabled? As in, day to day?”

For a long time, this question stymied me. I had no frame of reference, no way to start with “normal” and paint a picture of what “abnormal” might look like. I could describe specific obstacles, particular incidents, but I had no sweeping, instantly relatable analogy–no lens to capture what this life is like when it’s the only reality I’ve ever known.

Many have taken a crack at this tough little nut, and come up with innovative ideas along the way. Being disabled, some say, is like playing a video game on the highest difficulty setting. Others say it’s like navigating an obstacle course while everyone else uses a sidewalk. Some of us resort to hiking metaphors. Your path is wide and smooth; mine is a rocky, treacherous trailblaze of a life, which manages to be as hard as people assume, and at the same time, much easier.

It was not until I stood on a slushy street corner, waiting for an unusually long light to change, that it hit me. I had found my personal metaphor, and it was one that covered an astonishing amount of ground in the simplest way.

Being disabled, I realized, is a lot of standing on the corner, waiting for the world to decide that it’s safe for you to cross. My life as a disabled person involves a lot of standing still, watching cars fly freely by, wondering when the light will turn green long enough for me to make some headway. Since the system is more complicated than I can wrap my head around, and there’s no handy countdown, I have no clear idea when that might happen. So I wait, getting increasingly cold and impatient, for a path forward. Some days, it feels as though the world is filled with cars, and I am the only pedestrian in sight. They are roaring along while I walk and wait, walk and wait.

I wait for accommodations to be put in place. I wait for my paratransit ride to show up. I wait for technology that promises to save me. I wait for people to decide I’ve proven myself worthy. I wait for attitudes to change, for fears to be calmed, for unreasonable limits to be stretched. I wait for accessible products in a world where nothing is designed for me—nothing I can afford, anyway. I wait, sometimes quietly, more often restlessly, for the world to make room for me.

Then, when the waiting becomes too much for me, I try to jaywalk. I barge right into the unsafe spaces, the heavy traffic, the uncharted territory. I might get a warning or a slap on the wrist or even an angry honk from someone’s horn; occasionally, I retreat to my corner, chastened. I am foolish and fragile. I must be protected from myself, and from shadowy figures who would exploit me. I must be patient. I must be understanding. I must realize that change doesn’t happen overnight. I must not ask how long this light will stay resolutely red. I must not point out that everyone else seems to be cruising while I am plodding.

All in good time. Soon enough. Someday, if you go the extra mile.

Walk and wait.

Every now and again, that light turns green and I make real progress. Barriers are overcome, and my journey picks up speed. Life comes so easily that I have time to forget, if only for a few moments, that I was ever a lowly pedestrian in a dangerous network of drivers. The reprieve might even be long enough for me to point at other unlucky foot travelers, and to wonder loudly what they’ve done–or left undone—to leave themselves stranded at the corner.

Inevitably, that light turns red again, and I remember what it is to stand still, thwarted by incompatible software or a narrow-minded employer or a skills gap. There’s always something, and that something brings me back to the corner, where others can gawk at my inactivity and imagine how I brought it on myself. And it’s back to the waiting game.

With too much prodding, the metaphor falls apart, as so many of them do. Living as a disabled person is typically far less passive and futile than this framework would suggest. There is worthwhile work I can do while I stand on that corner. I am not a helpless victim of a static system, and I can certainly jaywalk if I wish, with the result likely to be rather tamer than death. Disapproval and societal exclusion aren’t quite as dramatic as an altercation with a speeding car, and I’m seeing genuine, lasting steps forward all around me. I am more welcome, more respected than I have ever been, and it’s not all down to my own advocacy.

Nevertheless, I use this comparison because it explains why the hurry-up-and-wait nature of living with a disability is so interminably frustrating. While my every success feels hard-won and snail-pace slow, my nondisabled peers seem to sail through most challenges, hitting so many green lights they don’t even notice I’ve fallen behind. For them, a red light is an inconvenience, not a brick wall, and no one is telling them to take those red lights gracefully. Meanwhile, I’m reminded to be grateful I’m allowed to cross at all. Commonly enough, the criticism comes from fellow disabled people, who are quick to condemn and still quicker to remind me that it could be worse.

I work toward a world in which I’m not always suspended in mid-stride, waiting for something to change or improve or move out of my way. I hope the next generations will know less and less of what it is to fall behind not because they are moving too slowly, but because the rest of the world hasn’t caught up. As I anticipate the birth of my first niece/nephew, I wish with all my heart that should they face barriers similar to mine, they will not need to be so patient and gracious and grateful. And I hope that, when the time comes to jaywalk, to break the rules and challenge the status quo, they will have the courage to do it, and the good fortune to emerge triumphant.

If you ask me, that future is definitely worth waiting for–but sooner rather than later, please.