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.

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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.

“I Was Hoping You’d Have a Dog…”

It happened yet again. A complete stranger asked where my dog was, seemed shocked that I don’t have one, and loudly expressed her disappointment, complete with injured sigh.

“Oh! I was really hoping you’d have a dog with you. It would have been nice if you’d brought a dog with you.”

This time, I was luckier than usual. She eventually continued engaging with me, despite my disappointing inability to provide the doggie interaction she so craved. Most people, once they’ve finished voicing their dismay, lose interest altogether. My value lies in my potential to bring a cute dog into their lives, and when I fail to fulfill that potential, I either fade into invisibility, or field intrusive questions about my blindness and how I cope with it. At no point during these interactions am I asked my name, what I do for work, what I studied in university, or any of the other small-talk topics I’d vastly prefer. For these sorts of people, I’m a living educational exhibit, or a possible conduit to what they really want—an adorable puppy dog.

At least this particular stranger went on to chat about other things, like the negligence of city drivers and the unseasonably gorgeous weather. In my world, that’s a win.

As I’m always quick to point out, I understand that people who make these comments are well-intentioned. When they’re expecting a dog and none appears, they aren’t aware of how much their transparent disappointment can hurt. I doubt they’d be so outwardly miffed if they knew they were making an awkward situation even worse. But as good as the intentions might be, they don’t make this behaviour any less irritating for those of us who encounter it regularly. When you’re the hundredth person to interrogate me for not wanting a dog, I must admit your personal motivations stop mattering all that much to me.

My readership knows by now that I have no intention of getting a service dog. I’ve taken pains to outline my reasoning. I’m unwaveringly supportive of service dogs and the handlers who work with them, but haven’t been shy about discussing the downsides of such a partnership. The one thing I feel I haven’t done with sufficient clarity is describe how it feels to be asked time and time again, “Where’s your dog?” and be met with undisguised judgment and displeasure when I say “I don’t have one.” It’s disruptive, sure, but there’s more to it than that.

Imagine how you’d feel if someone—a stranger, or someone you know well–accosted you to ask why you don’t have kids. Is it because you’re selfish? Is it because you’re incapable of taking care of them? Are you lazy? Do you hate children?

Take it a step further: imagine this person then went on to insist that your life would be so much better if you had them. This is even more fun when the person knows nothing whatsoever about you or your circumstances. They ask personal questions and draw incorrect conclusions based on their own biases and assumptions. By the end, you feel called out and frazzled. Meanwhile, the other party has no idea whether sensitive issues underlie your decision.

The kicker? When you complain, when you point out that the interaction made you feel uncomfortable, people tell you to lighten up. They tell you you’re overreacting. They tell you that not everyone knows how to behave around you, and that if anything it’s actually your fault for not educating them.

This cycle continues–about my lack of guide dog and my lack of children, as it happens—and my annoyance is dismissed.

Yes, I have many reasons for choosing a cane over a dog. Yes, I’ve thought them all through carefully. No, I don’t believe my life would be exponentially better if I had one. No, contrary to what you might expect, not all blind people use dogs. And, even if I did have a dog, I would not owe you the right to spend time with them.

People who actually do have dogs face a (much worse) variant of this behaviour all the time. Just last week, a handler friend lamented that while people ask her dog’s name constantly, they rarely ask for hers. Other handlers have mentioned the unpleasant reality that they will forever be upstaged by their dogs. Yet another friend noticed that if she left her dog at home here and there, people altered the way they interacted with her to such a degree that the difference was painful. People always want to touch the dog, talk to the dog, ask about the dog, take a picture with the dog, and compare the dog to their own beloved pets. Amid all their enthusiasm, they probably won’t bother to acknowledge the person attached to the harness. Most devastating of all, when handlers retire their dogs, they can expect to be asked “Where’s your dog?” far more often than “How are you?” Much like new mothers who discover that they are chopped liver next to their new baby, many of the handlers I’ve spoken to claim they feel invisible next to their dogs, and if they go out in the world without them, the public feels cheated.

Overriding the desire to fawn over a dog is hard, and it’s even more challenging to rewire our natural approaches to social situations. I’ve been “where’s your dogged” by people I’ve known for years and people I’ve known for five seconds. These off-putting comments have come from people who were otherwise impeccably polite, and who have since proven they see me as more than an express lane to doggie snuggles. Like so many issues I bring up here on this blog, this is not isolated to one group or location or personality type. This comes from everyone, it comes from everywhere, and many of us are far too courteous to call it out. When we do, we are quickly shouted down, sometimes by each other.

And so it goes on.

This is the paragraph where I usually insert some advice. This is the point where I present a solution, concluding with an inspiring call to action. This is also where I craft my social media quotes to tie it all together. This is, in other words, the useful part.

Except … I’ve got nothin’. All I can do is explain why this is a problem, do my best to contextualize it, and hope.

People are going to do what they do, but maybe the most well-meaning of them will read this and rethink. Dog handlers are so much more than the dogs by their sides. And I am so much more than the dog I don’t have.

Now, if we could please talk about something else, that’d be fabulous.

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.

Enough With the Sick Day Humblebrags

All my life, I’ve been surrounded—some might say afflicted—by troopers. 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 trooper.

The trooper’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 trooper 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 troopers 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 trooper 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 trooper, 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.

The Blind Girl Who Sings

In her memoir, Hourglass, Dani Shapiro writes about a “third thing” that all married couples should have in order to live happily together long-term. The first thing is you, the second thing is your spouse, and the third thing is the external glue that unites you. It could be a common taste in music, or the process of raising your children, or a mutual love of the outdoors. Whatever it might be, you need a third thing to give your relationship shape. And, as I read about this concept, I realized that music is the “third thing” in my relationship with myself. There’s me (first thing), disability (second thing), and music (that essential third thing).

I’m a complete nobody, but while I was growing up, I had a modest musical reputation. Rural surroundings made it easier to stand out, and my family’s love of music was all the encouragement I needed. One of my earliest memories is picking out “Mary had a Little Lamb” on my grandmother’s piano, refusing offers of help with growing stubbornness. At five, I was singing publicly. By the time I left home for university at seventeen, I had sung competitively for eleven years, and was a common figure at local fundraisers, funerals, weddings, and other community events. I’d never be Idol material, perhaps, but I was dependable and versatile, occasionally bringing crowds to their feet. Sometimes, I’d even win competitions. It was enough.

Once I began studying communications and preparing for a career centred more on writing than music, I let much of my talent go dormant. I still sang to myself constantly—to the dismay of my roommates, I’m sure—and found the time to sing with friends and perform at the occasional family funeral or wedding. I had shifted gears dramatically, releasing my careful posture and letting my exceptional lung capacity deteriorate. Music seemed to have no fixed place in my new reality, and city living meant that if I’d wanted to claw my way back up to where I’d been, I’d have to fight for it. Stressed as I was by academic pressure, chronic pain, and mental health struggles, I didn’t have that fight in me. I focused on writing, sang exclusively for fun, and made noises about joining a choir someday. Two years have passed since my graduation, and serious musical pursuits are still at the bottom of my to-do list.

Though I’m occupied with other things, I miss being a singer every day. I miss it for the obvious reasons: the rush of performing for an enthusiastic crowd; the joy of learning new and challenging pieces; the grind of endless rehearsals that somehow turn into effortless beauty when you’re looking the other way. I miss dressing up and connecting with strangers and congratulating fellow musicians. It could be gruelling, but I miss it dearly.

There’s another dimension to my longing: music was my conduit to a life less defined by disability. People often thought of me as “that blind girl who sings,” it’s true, and many of them waffled on about my vocal gift being divine compensation for my undesirable eyes. Even so, while I was singing, I wasn’t thinking about cane technique or traffic patterns. When people flocked to me after a performance to tell me my voice had meant something to them, no one was dwelling excessively on my broken eyes. If someone reached out to touch me as I passed, it was out of a desire to express something more positive than “You’re going the wrong way! I must save you!” Adjudicators were mostly impartial, occasionally referencing my lack of eye contact with audiences but otherwise more interested in what I sounded like than what I looked like on stage. With a few exceptions, I was judged for my talent, hard work, and emotional expression. Nobody who watched me earn a standing ovation with “Don’t Cry for Me, Argentina” was likely to label me incompetent, graceless, or pitiable. Music, especially in the minor leagues, was as close to meritocracy as I was ever going to experience, and I had no idea how valuable it was until I had to live without it.

The musically-talented blind person is a narrative with which society is comfortable and familiar. Few people questioned my right to inhabit that world. My “We’re not in Kansas anymore!” moment came in a rhetoric class, a couple of years in to my communications degree. I was unpacking my laptop, lost in thought, when a student I’d never spoken to before approached me.

“Why are you here?”

The question came with no bark on it. It wasn’t hostile, but there was a straightforwardness to it that made it shocking. Immediately, other students began to gather around, wondering how this would unfold.

“I’m in this course, so…”

“Right,” he continued, “but why are you here? In university?”

“I’m taking the Bachelor of Communication Studies program, and this class is one of the option courses.”

“I know, but blind people can’t be writers.”

It dawned on me that I didn’t have to participate in this bizarre conversation. I was being baited, or insulted, or something. Being a dedicated glutton for punishment, I responded.

“Of course we can be writers.”

“But how?”

By now, he was starting to sound genuinely curious. Receptive, even?

“Well, I use a computer, like everyone else…”

A few other students pressed closer, making disapproving noises. The student continued, sounding defensive.

“Well, I’m not up on all the technology…”

Clearly not.

Class began at that moment, interrupting one of the most unsettling conversations I’d ever had. As the instructor introduced the course outline, I realized, all at once, that I was back at square one, back to proving myself, back to basics in the worst way. Blind communications professionals made less sense to people than blind musicians, it seemed, and I had never felt more disabled. The student and I eventually became friendly, and I’ve since learned that the blunt approach I found so off-putting is simply part of his communication style, but he reminded me, whether intentionally or not, that I must always be ready, at a moment’s notice, to explain my place in the world.

The oft-repeated observation about minorities needing to work harder, shine brighter, climb higher than everyone else just to be regarded half as talented still holds true. Being disabled is a little less demoralizing when you have some talent or skill that helps you stand out for something other than your disability. If your reputation as a singer or designer or writer or chef becomes more powerful than your reputation as the weird girl with the stick, or the weird guy with the wheelchair, you’re winning. The trick is to train people to see your brilliance before they see your supposed deficiencies. Distract them with your finer points, and maybe they’ll forget about all the ways you don’t fit in.

There’s plenty of bitterness buried in this truth, but I’ve found a way to put a more encouraging spin on it. Instead of looking upon music as the only part of my life that made much sense, I choose to view it as a valuable skillset that set me up for greater success in other facets of my life. All those public performances have cured me of paralyzing stage fright. Public speaking doesn’t scare me, and thriving under pressure comes more naturally than working in slow-paced, gentle environments. Musicianship expanded my social circle, increased my confidence, and helped me shape my identity outside of the box marked “blind.” I may have been the “blind girl who sang” to most of my community, but that’s still better than simply being “the blind girl.” Now, I can be “the blind girl who writes,” or “the blind girl who edits,” or, you know, “another disabled human trying to live her life.” I’m happy enough in all of those boxes.

I hope every disabled child has the opportunity to find their third thing. Maybe, like me, they’ll discover fourth and fifth and sixth things, just to keep life interesting. These days, writing and editing have become almost as essential to my identity as music.

Discover that third thing. Give your relationship with yourself shape and definition. Allow others to see past the cane, or dog, or walker, or their own perceptions. Do it for yourself, primarily, and watch as other people begin to notice you in ways far more pleasant than “Hey! There’s that disabled person I always see at the bus stop!” Perhaps you’ll master that third thing to the point of renown, or perhaps you’ll choose to embrace it quietly. You do you.

Wherever your journey takes you, find your third thing, and be seen.