Talking to (Disabled) Strangers: A Handy Demonstration

The driver who picked me up from work today was a stranger, so I prepared myself for the typical onslaught of questions, well-meant but awkward and unbearably personal:
Are you totally blind or only somewhat blind? What happened to you? Were you born that way? Do you live on your own? Is that safe? Do you have a job? That’s so nice that they hired you! Do you have a helper? Does the government pay for your groceries? By the way, where’s your dog?
He introduced himself as my driver—no grabbing, no assumptions about how to get me from point A to point B—and gave me full control over how he guided me. He explained that he’d had to park in a tricky spot, describing obstacles so well that I found my way into the vehicle with perfect efficiency. That was the last time disability was mentioned.
On the way home, he asked me scores of questions, just as I’d expected. There was a slight twist, however:
Do you work in that beautiful building? Is it that gorgeous inside as well? How’d you become a speechwriter—that’s really impressive! What kind of education do you need for that? Who’s the best speaker you’ve worked with? Did you study historical speeches? What do you think of Churchill?
To my immense delight, he interspersed these novel, engaging questions with amusing anecdotes. He described his attempts at improvised dinner theatre. He told me about the time he channeled his inner Basil Fawlty, to hilarious effect. He asked me what “extemporize” meant. He mused about turning his many exploits into a book.
“I’m a great storyteller, but I can’t write. My punctuation sucks.”
“Eh, that’s what editors are for. You bring the stories. We bring the punctuation.”
As he dropped me off, he casually assumed I’d know the best way to find my building’s entrance, seeing as I live there and all. Sounds inconsequential, I know, but most drivers argue, at least a little.
Accompanying me to my door, he told me it had been wonderful to meet me, slipped in one last excited comment about how cool it was to chat with a speechwriter (guys, I’m really not very important, for serious), and he was off.
It was only as I was unlocking my apartment door that I realized it: I had had an effortless conversation with a complete stranger, and it had happened without my usual redirections.
At this point, I’m very skilled at turning a conversation away from topics I find uncomfortable, but this perfect interaction had happened out in the wild, so to speak, where conversations with strangers tend to derail without my intervention. There was no contextual framework, like a business mixer or conference space, to set the tone and subject matter. I hadn’t been the one to initiate, and I had not once felt the need to steer. I was free to sit back and forget, for a few minutes at least, that this sort of thing doesn’t happen every day. I happened to meet a person with natural tact and a sociable, curious nature. For once, that had been enough, all by itself, to set the interaction on a course we could both enjoy. More extroverted disabled folks might find this process easier, but connecting in this way has always been a chore for me.
I let this sink in for a moment, surprised at the power of such a small mercy. We had talked about writing and theatre and editing and Sir Winston freakin’ Churchill, but we had not talked about my cane, or my broken eyes, or the weird bruising on my face left by dozens of severe migraines. We hadn’t even discussed my tragic lack of a service dog. Disability had only come up when it was relevant, and the things that made me interesting stole centre stage from the things that made me strange.
Lest you get the impression my social life is even more stunted than you first thought, let me assure you I have animated, fascinating conversations all the time. But they almost never take place when the slate is clean. With unknown quantities, I’m usually back at square one, digging for common ground while the other party focuses on whatever makes us different.
But not today. Today, I got to be Meagan the speechwriter; Meagan the dinner theatre enthusiast; Meagan the Fawlty Towers fan.
Tell me: if we’d stayed on the topic of what the stick is for and how I use computers and why I have those bruise things on my face, how would we ever have gotten to the fun stuff?
So that, friends, is how you talk to a disabled stranger—with the kind of curiosity that would rather ask, “What do you do?” than “What happened to you?”

The Year of Eating Fire

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

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

Lightning, Molasses, and the Search for a Happy Medium

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Are you gonna hit me with that thing?”

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

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

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

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

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

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

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

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

Clumsy.

Awkward.

Unprofessional.

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

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

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

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

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

Wait!

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

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

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

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

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

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

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

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

Walk and wait.

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

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

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

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

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

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

In Praise of Those Who Share Their Wheels

Where I grew up, a five-minute drive (an hour’s walk) would take me to school, a post office, the nearest convenience store. Forty-five minutes in a car would get me to music lessons, assuming the weather cooperated. Two hours got me to the nearest city, where decent shopping could be found. Four hours got me all the way to Edmonton, for music competitions and specialized medical care. To get anywhere of consequence, I needed more than my two legs, and my legs were all I had.

Part and parcel of being a kid in a rural area was asking for rides—to the store, to extracurricular activities, to friends’ houses, to school, even, if you managed to miss the bus. We were all used to it, and all our parents were used to the asking. Many childhood memories involve being driven everywhere, through rain and snow and parental exhaustion. It was annoying to be so dependent, but we were all similarly needy, so it never chafed too badly.

Then, all around me, my friends and relatives began turning sixteen and getting their licences. Driving fever hit, and suddenly everyone was blasting forbidden music at top volume, speeding around in second-hand vehicles, thrilled with their new freedom. For the first time, getting where they needed to go was a matter of grabbing their keys and promising they’d be home by eleven.

Everyone but me, that is.

At sixteen, seventeen, eighteen, I was still hitching rides, especially when out of reach of a cab or bus. Visiting my family during the holidays meant convincing some kind soul to ferry me home. Getting to the hospital when I was too weak to rely on a cab driver meant calling everyone I could at inconvenient hours, asking the dreaded question through tears. Socializing with friends who lived on the outskirts of the city meant expecting them to drive half an hour out of their way, much of it through downtown traffic, for the dubious privilege of seeing me. My life, as a twenty-three-year-old urban dweller, is still influenced by my inability to drive. Asking for someone else’s wheels never gets easier, though it is routine and inevitable.

I could go on at some length about the ways being unable to drive makes life harder, more precarious, more difficult to plan, less convenient, less independent. Today, I’d rather focus on the people who answer yes, over and over. I want to honour the relatives, friends, and acquaintances who have driven in all weathers, at all hours, for all reasons. I want to highlight the kind stranger who, discovering me lost and bedraggled during a storm, drove me to my house without any thought of recompense. They have performed this service whether they felt like doing so or not. They have done so without expecting a return on their investment of time and gas money. They have done it, if not always without complaint, then with generosity. The music lessons and emergency medical appointments and shopping trips and singing engagements and social visits have all meant the world to me, and I owe that joy to the people who transported me there.

When someone asks for a ride because they have exhausted all other options, you know they desperately need it. You know it will improve their lives in ways large and small. You know that it is not usually easy for them to ask.

If you’ve been a frequent driver for others, know that you are valued, and needed, and appreciated. We may not always tell you so, but it’s no less true.

It’s easier than ever to travel without a vehicle, but there will probably always be a need for a kind soul with a car.

Two Years of Paratransit: Sad Truths and Hard Lessons

I’ve been a paratransit user for almost two years, and I don’t like to talk about it.
The reason I keep relatively quiet about my paratransit use is that I understand the stigma that comes with being a frequent rider of the short bus. Assumptions are made about my supposed lack of self-respect. Pity and scorn flow freely from disabled people, many of whom are former (and to their thinking, emancipated) paratransit riders. Horror stories are dredged up from decades past, often third or fourth-hand and seeming more dramatic with every telling. Potential employers cringe.
Whatever you might think of paratransit services, the reality is that they exist, many people depend upon them, and until we live in a utopia where public transit is perfectly accessible and adequate mobility training is available to everyone, it’s going to keep existing. I’d prefer to focus on the ways it needs to improve, rather than insisting it needs to be eliminated.
Here are some uncomfortable truths and tough life lessons I’ve learned since becoming a regular paratransit passenger. Sharing these will, I hope, make for interesting reading. Beyond that, I hope this post will be engaging for those who have had similar experiences, and instructive to those who want to educate themselves about paratransit and the people who use it.
Disclaimer: Paratransit services can vary widely from location to location. My personal experiences may not reflect those of all passengers.

Personal Space? What Personal Space?

Paratransit services are typically designed for a vast range of clients. Some clients, like me, require very little assistance, while other clients need help with basic tasks like climbing into the vehicle and fastening seatbelts. Like many one-size-fits-all solutions, paratransit drivers are given training that isn’t able to address every possible situation. Drivers are often trained to assume clients are completely incapable, because not all clients can communicate how much assistance they need.

This means drivers will lean across me to fasten my seatbelt. They will place their hands on me to steer me into a seat. Occasionally, they’ll try to guide me in unwieldy ways: by the hand, by the shoulder, even by the waist. Once I make it clear I don’t need or want this assistance, most drivers back down and apologize, though the odd driver will argue. Even so, I routinely find myself physically handled in ways most people would find invasive, despite repeated assertions that I don’t want to be touched without prior consent.

While I recognize that this pattern is mostly the fault of training that tries to do too much for too many, it’s indescribably wearing to flex your advocacy muscles day after day–muscles you’d normally reserve for the general public. More than once, a fellow client has violated my personal space in ways that are wildly inappropriate, only to have drivers shrug and assure me I’m in no real danger. I’m not in the habit of fearing fellow disabled people, but that’s not of much comfort when someone is stroking your arm and tugging repeatedly on your hair.

Even though paratransit is a service built specifically for disabled people, it doesn’t always feel like a very safe one.

Nine Rings of Scheduling Hell

Coordinating the schedules of thousands of people is no mean feat, and I admire the staff that somehow manages to make it all come together. Much as I respect the complexity of the job, I can’t help but notice that my time is treated as elastic and unlimited. I book in such a way that I’m far too early, just to avoid being far too late. Trip-booking is a logistical nightmare, because:

  • The pickup window isn’t always based on when you want to arrive at your destination. In my city, it is based on when you want to be picked up. So, you have to estimate your travel time within a half hour window, and hope that estimate is accurate.
  • The current policy for the service I use states that a client can be kept in the vehicle up to 90 minutes. Depending on scheduling, weather, and traffic, it can take over an hour for a commute that would normally take about 15 minutes. Good luck planning around that.
  • If a driver picks you up after the half hour window has ended, they are considered “late.” However, “late” is a pointless distinction because drivers arrive when they arrive. A driver missing the end of your window just means you’ll be waiting as long as it takes, regardless of how time-sensitive your personal schedule might be.

Many clients who use paratransit have jobs. That means we need a practical scheduling system that allows us to have a reasonable amount of control over when we’ll be picked up and dropped off. Employers don’t appreciate unpredictable employees, and who can blame them? In my city, my trip to work is considered no more important than a trip to the mall, or to church, or to Starbucks.

The worst bit is the apparent bafflement and annoyance booking agents and dispatchers express when I insist that my time does matter. Shocked as they are that I don’t only go to church and medical appointments, there isn’t much regard for my time–and that disregard extends to many disabled people I know. For a group that already struggles to find and maintain employment, a service that doesn’t prioritize a working person’s time is one more needless barrier in a line of others.

Change Ruins Everything

Besides my job, whose schedule is quite rigid, I tend to lead a rather spontaneous life. I’ve always been an agile gal who didn’t mind sudden changes–until, of course, paratransit became part of my life.

Since my trips usually have to be booked several days in advance, and must be cancelled with at least two hours’ notice, paratransit is not ideal for someone with a dynamic lifestyle that is subject to change without much warning. This isn’t so much a flaw in the system as it is an unavoidable consequence of trying to make one service work for thousands of busy people. It’s understandable that paratransit wouldn’t be able to accommodate sudden schedule changes, and I’ve made my peace with that, making other arrangements for those times when I’m left without a ride.

But there’s a darker side to this issue. You see, for a service that is tailored to the needs of disabled people, paratransit is surprisingly unresponsive to some of our most basic needs. I have migraines and chronic pain, neither of which are in the habit of giving me 24 hours’ notice before they strike. Since I can’t always travel when dealing with severe pain or nausea, I find myself cancelling trips at the last minute more often than I’d like. Agents sometimes grumble, but once I explain, they don’t penalize me.

At one time, though, this was not the case in my city. A friend and inveterate paratransit user remembers a time when cancelling at the last minute was always penalized, regardless of the reason. Missing too many trips could result in suspension, which is a scary thought for people who rely on paratransit to take them to important appointments. It took considerable advocacy from the disability community to make the city realize that an inflexible service for people with disabilities made no sense whatsoever. Our lives are complicated, and we can’t always bully our bodies into cooperating with us. A service that doesn’t bake this reality into its policies serves no one.

Welcome to the Margins

I’ve always identified as a marginalized person, simply because having multiple disabilities seemed to place me well within that category. Not until I took paratransit did I get a glimpse of what being marginalized could look like. Every day, I meet clients who are so far on the fringes that it feels as though we occupy two different worlds. Some can’t communicate verbally, and struggle to make themselves understood when a driver goes the wrong way, or drives right past their house. Others love to chat, but are ignored or grudgingly tolerated by drivers and clients alike, whose patience and compassion have either eroded over time, or were never present at all. Still others are struggling with sudden injuries and medical crises that have permanently altered their lives. I’ve listened as clients howled with pain, trying to maneuver themselves into high vans and buses. I’ve heard seniors apologize profusely as the driver buckles their seatbelts, humiliation colouring their voices. I’ve sat quietly by, helpless, as a client tried in vain to engage their escort in conversation, each overture rejected. I’ve cringed in my seat as a nonverbal client screamed in pain, or distress, or some other violent emotion I couldn’t decipher, while the driver focused on the traffic ahead.

No doubt these clients live happy, fulfilling lives, and I’ve chatted with enough of them to know they are just as interesting, warm, and spirited as the rest of us.

But, in the confines of those vehicles, it can be hard to forget about the margins that hold them in place. It can be hard to get over the fact that I’ve ignored people like this myself, when having a bad day or feeling irritated by something else. It’s impossible to pretend I haven’t played a part in the marginalization of at least one of these people, out of fear or ignorance or a desire to be left alone. It’s hard, in other words, to praise the progress we’ve made when confronted so frequently with how far we still have to go.


There are many things I appreciate about paratransit. Door-to-door service means I feel safe, even in dangerous neighbourhoods. I can avoid pitted sidewalks and inaccessible areas. If I don’t know the route to my job interview or my doctor’s office, I can still get there. My abysmal outdoor mobility skills don’t completely constrain my life.

By and large, paratransit services appear to be run by compassionate people who really do care about managing it well. They want you to get the times you asked for. They care if they pick you up outside your window. They show empathy when you’re in pain, and they’re happy to help where they can.

Still, we mustn’t get complacent. Paratransit has many deeply-rooted problems, and since it fills service gaps for so many people, we need to fix what we have rather than tearing it all down in a fit of cynicism, or dismissing those who still use it.

Now that you’ve reached the end of this post, I hope you’ve offloaded a few assumptions and re-evaluated some stereotypes. I hope you know that there is no archetypal paratransit user. There is no typical use case. There is no neat, tidy template into which you can shove those of us who, for one reason or another, need a special service to get around.

Whether you’re a paratransit user, an employer, an educator, a social worker, or a paratransit staff member, I hope you come away with plenty to think about.

Got some thoughts to share? I think this post calls for a lively comments section, don’t you?