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.

Stronger (and Clumsier) Together

Many people have been working from home for a long time, and are used to doing everything by phone or video chat. The novelty has worn off for them, and they know how to conduct themselves gracefully, more or less. But for the rest of us, the last couple of months of teleconference meetings and online group chats have been, well, an adjustment. Managing group chats and teleconferences is an art, and we are not yet artists.

I’m not a phone or video chat person at the very best of times, and these are not the best of times. Much of that aversion is due to my general preference for written communication, and fierce discomfort with awkward situations.

It turns out some of it is a new understanding of how much the average person depends on nonverbal communication. It’s a cliché at this point, and blind people are frequently taken down a peg via sketchy statistics about exactly how much communication is unspoken, but it’s never been slammed home quite like this for me before. Physical distancing has meant no one can see each other well, or at all, and boy, does that change things.

I don’t know about you folks, but all my phone and video chat meetings have felt infinitely more confusing, and much less satisfying, than in-person gatherings. The flow of conversation is stilted, even when audio quality is high. People interrupt each other constantly, and it’s clearly accidental. Audio and video delays make it harder for people to follow group conversations, since what they hear does not line up with what they see. Larger meetings have lost their effortless interactivity, because people can’t read a room when there’s no room to read. A lot of the visual cues sighted people use to make sense of complex group dynamics have vanished, and they’re all tripping over each other as a result.

Me? I’m just my ordinary clumsy self, no worse off than usual, but I’m suddenly contending with everyone else’s confusion, which makes for awkward times.

And so, once again, I am reminded that I should be a tiny bit kinder to myself when I’m out in the world, mingling with people who have a distinct social advantage. COVID-19 has encouraged me to acknowledge how much effort and skill I bring to all my social interactions, and to admit that, hey, I’m actually pretty good at navigating social situations while missing the majority of cues on which everyone else relies.

All these years, I, as well as sighted people around me, have been hard on me for the cues I miss, the delicate social dynamics I’m oblivious to, the times I interrupt people because it’s apparently not my turn to speak. I have sat through hundreds of fast-moving group conversations, frantically filtering the chaos, opting not to speak at all in many cases to avoid the awkward social dance.

Is someone about to speak? Is it time yet? Are people looking elsewhere? How have people reacted to what I’ve just said? Everyone is quiet. Whyyyyy are they so quiet? Are they processing? Waiting for more? Was it okay? Am I doing okay?

It’s obvious, I know. Of course this was happening because a hell of a lot goes on in silence, where I can’t perceive it, in ways I can’t possibly interpret. Of course I should expect to struggle more and feel clumsier; I’m working with less than half of the information everyone else has! Shouldn’t a person who has been blind for a quarter-century know that without visual input, everyone else is just as clumsy as me?

Well, yes. And I did know it, intellectually. Watching it play out firsthand, however, has been interesting and, dare I say it, validating?

Watching socially adept sighted people make ‘blind person mistakes’–getting confused, losing track, interrupting, addressing people who have already left the conversation, going quiet because it’s all too much–well, it’s been helpful. I take no pleasure in it, and I have no doubt we’ll all find our groove soon. But it’s been an excellent opportunity for me to realize, all the way down, that I’m doing pretty okay out here.

If you’re a fellow blind person who has gotten down on yourself for missing cues and failing to interpret the impossible, I invite you to chill. I also invite you to extend that chill to other blind people as they flounder through this visual world. And let’s be patient with sighted people wrapping their heads around this new way of communicating, just as they have been (mostly) patient with us.

We’re all in this together. We’re all clumsy, and awkward, and out of our depth. Together.

Finding Your Hive: Longing for Usefulness as a Disabled Worker Bee

Over the past few years, I’ve been focusing less on sheer survival and more on living in a way that brings me lasting contentment. Common wisdom for such a pursuit most often begins with ‘find your tribe’ sentiments.

Said wisdom did seem to be working well for most everyone I knew. Each time a friend picked up a hobby or clicked with a social group, their general happiness seemed to improve tenfold. Then there was me: phenomenal friends, supportive coworkers, closely knit family, thriving romantic partnership. My social life was thriving for the first time since high school, and loneliness had become something other people suffered. I was even beginning to explore creative hobbies after too much time spent in stagnation. My writing showed promise, and music, that stalwart friend, was a central part of my life again.

So where was the life improvement squad? Where was the revelatory sense of purpose? Where was the click?

Maybe I was supposed to order it. Maybe I’d have to go online and fill out some form and half the fields would be unlabelled and everything would be colour-coded and then the CAPTCHA verification would be inaccessible and maybe I should just have a nap?

Anyway, just as I accepted my destiny as incorrigible malcontent, I found a comfortable niche at a new job. The work I do offers abundant opportunity for individual accomplishment, but there is also a lot of work that’s unglamourous, uncredited and, therefore, quite unpopular. It needs done, and when it’s done well it brings enormous value to the team, but no one likes doing it.

Well, no one but me.

Once I developed a widespread reputation for being the person who’s up for anything, always willing to embrace the ‘hard’ in ‘hard work,’ I felt it — my resounding click. I was useful, and that was just what I’d been looking for.

You see, like many rural kids, I grew up in a culture obsessed with usefulness. There was always work to do, and if there wasn’t, you weren’t looking hard enough. All around me, my sighted peers were making themselves useful mowing acres of grass, feeding livestock, doing renovations, operating farm equipment, changing someone’s oil. You name it, someone my age was doing it.

As for me, I could usually be found unloading the dishwasher or doing laundry while everyone else rushed about doing things I was too blind to tackle. In an environment like mine, if you couldn’t drive, couldn’t see, couldn’t learn purely by observation (no one had time for adapted training, even if they’d known how to carry it out), there was no sugar-coating it: you weren’t of much use. I know plenty of rural blind people learn most of these things by grit or gumption or good, patient teaching—see you in the comments, guys, keep it civil—but for reasons that are numerous and complicated and not at all relevant here, I didn’t.

So, in effect, I spent my formative years knowing I was not very useful, while up to my eyeballs in a culture devoted to utility. As you can guess, that understanding sank deep into my marrow and helped forge who I’d become: A restless, rudderless person who couldn’t work out what would make her truly happy.

Being academically inclined was nice. Being reasonably intelligent was handy enough; that would help me make money later, maybe. My singing brought others joy, even if it wasn’t going to babysit their kids or cook their dinners. But I felt like a defective worker bee in a very busy hive, and no one seemed to know what to do with me.

It took me way too long to realize what I need for true contentment is less ‘find your tribe’ than ‘find your hive’. I’m not wired for attention and I’m not especially motivated by approval. I like working with other people, but community, important as it is, doesn’t fulfill me on its own. As it turns out, finding my people is my nice-to-have, not my must-have. What I hunger for isn’t attention, recognition, or a group of people who ‘get’ me, though I won’t say no to them. Instead, I am the ultimate team player, totally invested in a job well done. I want to have your back, not take your limelight. I want you to notice me for my dependability, not so much for my brilliance, though again: I won’t say no to that either. If I’m competing with anyone besides myself, it’s to see who is most helpful, not who is most impressive. I hunger for the knowledge that because I’m around, doing my best work, someone else’s life is easier.

I wonder, as I write this, whether other disabled people have the same worker bee drive. Plenty of nondisabled people crave this sort of external validation, of course, but I have a feeling there are a lot of disabled people out there who, having been labelled ‘of little use,’ have grown into restless, rudderless people like me, asking themselves why they never feel whole unless others are counting on them.

And I’m sure there are many more out there who have yet to feel useful, at least by society’s narrow standards. Isn’t most disability defined, after all, by the work a person can or can’t do? By our earning potential? By our limited ability to contribute financially via the labour market? Don’t so many of us find that the only thing worse than a bad job is no job at all? Beyond financial constraints, what would unemployment say about us and our worth?

I think you’re out there, worker bees. I think you’re worried about whether you’ll ever be useful enough, and I think you find meaning in what you manage to get done. I believe you have mixed feelings about the fact that the toxic mentality that made you feel small and inadequate is giving you such fulfillment. I expect you live to hear people say, “you really helped me out today,” and I’d bet some part of you balks at the very thought of being so vulnerable to how others feel about you.

If I were to guess, I’d say you might even question whether enjoying your usefulness demonstrates a lack of self-respect, a brokenness, an internalized ableism you can’t quite shake.

Am I getting warmer?

So if you’re out there, worker bees, I propose the middle ground, as I so often do. Delight in your usefulness. Find the niche that lets you be a go-to person, even if it’s for something simple. Relish it without apology.

Yes, our society is obsessed with measuring the utility of human beings and punishing or rewarding them accordingly. Yes, that obsession is more pronounced and more damaging when those humans happen to be disabled. But don’t let that deprive you of the pride and fulfillment you derive from your ordinary, unglamourous work. Don’t chase admiration simply because someone told you that the only good disabled person is an outstanding one. Most importantly, don’t you ever buy in, the way I did, to the idea that your value lies in how well you stack up next to nondisabled people. That way lies madness. Life doesn’t have to be a competition. The unremarkable, uncredited tasks you perform every day have weight. All you have to be is the best version of yourself.

Go, worker bee, and find your hive. And when you do, take what brings you happiness and leave the rest.

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.”

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.

Backhanded Compliments and the Tyranny of “Nice”

Many children learn early on that their smallest accomplishments are cause for cheers, applause and glowing social media posts. When you’re very young, your every milestone and every “first” are worthy of celebration, and with good reason. There’s nothing wrong with praising a child for walking well or pouring drinks with accuracy. For most people, this trend eases and finally stops, and they start earning praise for more impressive stuff like finishing a degree or landing a great new job. It would be pretty weird to keep cooing and cheering over an adult who can navigate their own home without guidance and pour coffee independently, yes? You’d be mortified if someone seemed surprised that you, a fully-grown adult, were capable of essential daily living tasks, right?

Right?

Sadly, an awful lot of  very well-intentioned people appear to have missed that memo—the one that says admiring someone’s basic skills stops being cute when they’re all grown up, and that disability is no exception to this rule. It is no less embarrassing to hear “Wow! You handled those steps so well!” or “You got your own coffee!” when disability is involved. While some of us do work harder than the average person on cultivating everyday skills—some of us very hard, in fact—drawing attention to our prowess can feelmore patronizing than validating. I don’t speak for everyone, which is the caveat I always mention at this point in a post, but I can say with confidence I do speak for a very large number of us.

Look, I get it: you want to say something nice, make someone smile, acknowledge what you consider to be exceptional talent or strength or perseverance. Maybe you feel inspired by the person you’re complimenting, or perhaps you can’t think of a better way to break the ice. It could be that you’re genuinely curious about how they get things done given the barriers they face, or you’re anticipating they’ll need help later and you want to develop rapport in advance. You’re a nice person, just trying to do a good deed for someone else. I truly do understand.

Keep this in mind, though: a great many times, being kind is preferable to being nice. Emotions tend to run very high in these types of situations, because no one likes discovering their attempt to make someone happy might be backfiring. Nevertheless, I do believe most people want to treat disabled people kindly, and kind people don’t make others feel condescended to or humiliated, even with the best of intentions. Kind people consider context, and compliment accordingly. And kind people don’t let “I was just being nice” outweigh any harm they might cause.

You may be shaking your head, feeling down on yourself because you know you’ve messed up this way. I beg you not to take this personally, however. In my experience, just about everybody makes this mistake at least once. It’s not isolated, and it’s not rare. Even if you actually have a disability, you have probably done this to someone without being aware of it. Proximity to disabled people should never be mistaken for immunity, and I’d be hard pressed to think of someone who hasn’t fallen into this trap. I’ve certainly spent some time there myself, and I ought to have known better.

So, here’s a simple test to help you. Next time you plan to praise a disabled person for a specific skill, ask yourself whether you would feel awkward if that compliment were directed at you. Would it make you uncomfortable if someone patted you on the back for, say, picking out your own outfit? Might it be a little off-putting if someone congratulated you for knowing where the staff kitchen was, six months after you started working in the building?

If you determine that the compliment you want to offer would make you feel pretty good about yourself, go ahead, as long as it’s contextually appropriate. Feel free to tell me if you like my writing skills. Tell my designer friends they have excellent creative instincts. I have no doubt my partially sighted partner would love to hear that you enjoy his cooking. These are all respectful compliments, and there’s no backhanded “You do well … for a disabled person”subtext attached. Further, you avoid giving the impression that people whose disabilities mean they do need help with basic tasks are somehow inferior to people who are able to do those tasks independently. After all, an adult who needs assistance with grooming, for example, is no less worthy for needing that help.

On the other hand, if the compliment you’re considering would feel insulting or at least bizarre if directed at you, that is your cue to pause. Think about whether you might be causing more discomfort than goodwill, and be mindful of who is around. Being complimented on my travel skills when I’m crossing the street is one thing. It’s distracting and unnecessary, but I’ll survive. In a professional setting, however, it’s likely to make other people notice me not for my solid work ethic or valuable skills, but for a disability that does not and should not fully define me.

Don’t be shy about telling people what you admire about them. Nothing in this post is suggesting you have to conduct a full-scale cost-benefit analysis every time you make a positive comment around a disabled person. I’ve received quite a few thoughtful compliments in my life, and while I’m not as graceful about taking them as I’d like, they’re always welcome. I do ask that, in future, you run through that simple test in your mind, and practice being more deliberate about how you dish out praise. Many, many of us will thank you, if only inside our heads.

Oh, and if you simply want to know how something gets done, or how a particular barrier is managed? Google your question, or ask. If we’re not crossing an intersection or trying to do our shopping, most of us are quite happy to answer.

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.

Enough With the Sick Day Humblebrags

All my life, I’ve been surrounded—some might say afflicted—by troupers. You know the type: they can work through anything, raging fevers and hacking coughs be damned. Industriousness in the face of illness is a point of pride, and rest is for other, presumably weaker, people. Their insistence on being out and about when they’re contagious does cause some cringing from those around them, but discreet disapproval is nothing to a long-time trouper.

The trouper’s crowning achievement? They haven’t taken a sick day in ten, twenty, thirty years. Perhaps they did, once, but it was life or death, so that’s forgivable—just barely.

I’ve sat self-consciously among these trouper types, growing progressively guiltier as they list the ailments that didn’t stand between them and their work. Shifting restlessly, I’ve listened to them condemn people who choose to take sick days, trading anecdotes about rampant abusers of the system. I’ve begged the universe to disperse my atoms as they called for bonuses that would reward employees for refusing to use their allotted sick leave. No one stopped to consider what that might mean for people like me, even as I sat in their midst. Most irksome of all, no one stopped to admit that not needing sick days said less about their work ethic and more about the privilege of a healthy body—something many of them took for granted.

The idea that we shouldn’t come to work sick is gaining ground, though it’s cold comfort for people who don’t have the privilege of paid sick leave. Employees are encouraged not to expose their colleagues to contagious illnesses, and sick day guilt is finally being acknowledged as a mainstream issue. Doctors are calling for an end to sick notes, citing the valuable time wasted, the germs needlessly spread to vulnerable patients, and the hefty bills employees and students with common colds are left to pay. (A few months ago, my poor partner paid $40 for a sick note.) As a student whose migraines were not well-managed, I dragged myself to walk-in clinics and hospitals when I should have been at home, resting and suffering in peace. I, too, have paid pretty pennies for slips of paper that declared what I already knew: I had a migraine, and I needed bedrest. Hoops must be jumped through, and HR departments must be appeased, but that doesn’t make the system sensible.

Sick day guilt persists. Employees who should be resting will sometimes work remotely. They take calls when they should be sleeping, or answer emails from a doctor’s waiting room. People lucky enough to have access to paid sick time still have concerns about job security, workloads, and cover-offs. Despite cultural acceptance of self-care and work-life balance, feeling terrible about staying home is practically a cliché. Even when employers actively encourage time off, many employees–and I include myself among them–feel more comfortable toughing it out.

Aside from the usual bugs that strike everyone each winter, I deal with chronic pain in my neck, shoulders, and back. The pain typically manifests as nagging headaches, stiffness, and muscle aches. Occasionally, nausea, watering eyes, and disorientation will join in, making it difficult to focus. When the pain peaks, which isn’t often, thank goodness, I struggle to find words, concentrate, and even orient myself physically. Spurred by sick day guilt, I have insisted on working during those severe pain days, even when it meant bouncing off doorways or making silly errors. Anyone with sense could see I ought to be resting, not working, but growing up around all those proud troupers had left a powerful impression.

I hit my lowest point while working a summer job. A combination of emotional stressors and a new medication made my migraines spike, and I woke one morning with a leaden feeling of wrongness throughout my entire body. I got on the bus, limbs tingling, and realized I was getting yet another migraine. I crossed a busy intersection to access my office building, but was so dizzy I couldn’t identify which way was forward. When I tried to climb the steps into the reception area, my feet failed to make the appropriate motions, and I fell. Twice.

When I got to my office, I immediately began working, hoping I’d be able to make it through the day. By the time a colleague found me an hour later, I was draped over my desk, green and shaking. While a kind stranger drove me home, a bucket cradled in my lap, I understood that if I didn’t change, I’d be unable to work at all. An emergency hospital visit a few days later confirmed it: the guilt was unsustainable, and so was the trouper mentality.

Nowadays, I manage my pain much more consciously. I have several coping mechanisms I can use while at work, and I know how to ask coworkers for help and support. I take care of myself at home so I can function well at my job, and take the odd sick day without too much dithering about whether I deserve the time. This approach has meant I suffer less pain in the first place, and manage it more successfully when it does come along. My current work environment is a balanced one, and when I go several weeks without a severe pain episode, I feel lucky, not proud. I am not special for not needing sick days as often as some other coworkers do, and I know it.

Abandon the sick day humblebrags, and recognize that illness is not a moral failing. Avoid bringing that nasty flu into the workplace unless you’re positive your coworkers can’t get along without you. Stay home when you can, and strive for real, lasting recovery. If people take sick days around you, reserve judgment. Don’t treat your lack of need for sick leave like a badge of honour. If you have the option of taking paid sick time, coming to work when you’re unwell means you are either very stubborn or very dedicated. It doesn’t necessarily place you above your colleagues.

We’ll all have days when we feel as though taking a day of rest is not an option. We have too much to do. People are depending on us to be present, and we’re confident we can handle the discomfort. I’ve been there, and I’ll be there again. I’m not going to miss a file audit meeting or workshop because my pain is a bit worse than usual. It’s okay to be a trouper, at least some of the time.

But, as we overcome physical limitations to be present, let’s do so with the awareness that staying home is a valid choice, too. Let’s acknowledge there will always be those who abuse the system, without demanding that everyone lose out because of a few bad apples. Let’s stop expecting people to be impressed by a sparkling attendance record. Let’s shift our focus to performance and productivity.

Oh, and let’s take a crack at conquering that sick day guilt. Health is not a sign of strength, and illness is not a sign of weakness.