Guest Post by Laura Eberly: A Capital B in My Bonnet

Accessibility enthusiast Laura Eberly, author of this wildly popular post about using screen readers as a sighted person, is back with new research to share. She started with a simple question: Should braille be capitalized? In typical Laura fashion, she found the ultimate rabbit hole. She dug through archives, consulted experts, and read all about the controversial history of blind people reading, so you don’t have to. Now, she’s presenting the best and weirdest of her findings to us.


I was on a mission. Wrong was being done, and duty was calling me, just like in this comic:

Voice from outside the room: Are you coming to bed? Person on computer: I can't. This is important. Voice: What? Person on computer: Someone is WRONG on the Internet.

Photo source: xkcd.com

You see, I was eager to find the right way to handle the capitalization of braille — the writing system, not the person — and I was pretty much ready to shout to the world that I needed answers. Why did I, as a sighted person, care so much? Well, I’ve been working in accessibility testing for years, and I grew to see things as neatly categorized:  pass/fail, bug/feature, process /chaos. But capitalization of the word braille always stuck out to me as being inconclusive, a grey area, defying categorization. Over time, as my auto-correction software kept changing the capitalization of my writing, it grew from a minor point of confusion into a big, glaring disruption whenever I saw it in print.

The Braille Authority of North America (BANA)’s position statement from 2006 said I should use lower case, but some of my friends and colleagues, actual braille users from around the world, often preferred an uppercase B. If I asked them about it, they’d usually say that they were taught to do it that way and didn’t care to change it. But what good was a seemingly official standard if braille users weren’t using it? What logic was behind braille teachers’ decisions? What was going on?

I’d long been touting the BANA statement’s lowercase recommendation, which recommends lowercase b. BANA’s intention was to make braille an eponym like ‘sandwich’, a word that used to be named after a person but became a standard part of the English language. However, I’ve also seen the argument that writing braille with a capital B is a sign of respect for its inventor, and prominent organizations like the National Federation of the Blind use upper case. I felt it was time for me to consult some experts!

I reached out to a Teacher of the Visually Impaired, Dr. Ting Siu, who recommended I talk to Dr. FM D’Andrea, one of the authors of the BANA statement. She generously consulted the extensive collection of journals on her shelf, finding lowercase b usage dating back to 1973.

Dr. D’Andrea also referred me to Mike Hudson, the museum director at the American Printing House for the Blind. He helpfully sent me reports from administrators of schools for children who are blind from around the US dating back to 1834. To my frustration, the older reports only referenced “embossed books,” (which used raised print letters rather than dots), and included horrifying language like “… whose zeal in the cause of the Blind entitles him to the gratitude of this unfortunate class of beings.” I was thoroughly shocked and disgusted by encountering such a view of disability and troubled even more that this was written by the adults trusted to run these schools. I had to move on from these sources.

I soon discovered capitalization was just one of many disagreements surrounding writing systems for the blind community. In the US, around the 1800s, there was a decades-long battle over different forms of tactile writing, including braille and New York Point, a name that is always capitalized, by the way. The stakes of this debate grew higher when the government of the state of New York wanted to standardize the writing system taught in schools and used for printing books. Emotions boiled over during the extremely heated 1909 hearings of the New York board of education, where “protests were so violent that a second hearing was held.”  For the hearings, Helen Keller wrote a letter arguing against New York Point, writing braille with a lowercase b while she was at it. The fact that New York Point books were almost never printed with capitalization was part of what led to its demise at that hearing. This intrigued me and guided me further down into a research rabbit hole.

Whenever braille history is discussed, like in this excellent podcast episode called “The Universal Page” it often references “The War of the Dots,” a chapter in a collection called As I Saw It by Robert B. Irwin, a blind educator and supervisor who held a master’s degree from Harvard. I dug deep into the internet archives to find the original book so I could scour it for clues about capitalization. I read about Miss L. Pearl Howard and Mrs. Elwyn H. Fowler, representatives of the Uniform Type Committee from 1911, who travelled to 36 states collecting data to determine which writing system was better. They brought in braille and New York Point readers, timing them for efficiency and accuracy as they read a sample set of dots. They used nonsense dots written in the style of each system to avoid skewing the results with readers’ existing knowledge. I was so pleased to have found some process-loving kindred spirits from over 100 years ago.

However, after a quick trip to Nova Scotia, they discovered that the British braille used there was superior to both American systems for reading speed and comprehension. They immediately ended the study after this discovery. (Fantastic!) But their conclusion? Create yet another American system, called the Standard Dot, to compete with British braille. (Womp womp.)

Thankfully, by the mid-1920s, pushback from braille users stopped the Standard Dot and other schemes. A memorable example was a quote from an unnamed conference attendee who reportedly burst out: “If anyone invents a new system of printing for the blind, shoot him on the spot.” I was struck by the realization that I, too, was a sighted person arguing about braille when I had no real personal stake. Reasoning that other people might benefit from my findings, though, I continued my research.

At last, I turned to the origin of this intriguing saga, Louis Braille himself. He was expected to read using a system of raised letters that were invented with the thought that both blind and sighted people could read the same page. He mastered this despite raised lettering being hard to manufacture and harder still to make out by touch. We all know he went on to invent braille by simplifying night writing, but he didn’t name it after himself. In his 1829 book, Procedure for Writing Words, Music, and Plainsong in Dots, he simply called the system dotted writing (which the pedant in me just couldn’t help but notice was completely lower case). Tragically, his original writing and his school’s library were burned by the head of his school in an attempt to suppress its use. This is why one of Braille’s only surviving writings was written in raised letters, not braille, even though it laid out his thoughts about how braille should be written. For me, this loss was devastating to read about, and more devastating, I’m sure, to blind readers who will never experience most of his work.

I still wanted to see the earliest example, in print, of when Louis Braille’s writing system officially became named after him. In part, it was to see when he received long overdue respect, and in part, it was because I wanted to see how it was capitalized. I still couldn’t let that bit go. Late one night, while reading more of “The War of the Dots,” I came upon one answer to my original question about capitalization. In the 1932 Treaty of London, British and American braille code representatives agreed that “Capitalization was made optional with the publisher.” In this quiet moment, with me totally unsuspecting, history had spoken. There is no right way to capitalize braille. Uncertainty and ambiguity are baked into the process, and indeed, into life. Braille, like many systems, is a living one, that adapts over time and belongs to those who use it.

I never did find the first reference that changed the name from dotted writing to braille, but I did get close with a reference to a French pamphlet from 1880 that does not have its content online. I don’t know if the capital B in the title refers to the person or the writing system.

I now encourage capitalization of the word braille as a personal choice. I still use the BANA style in official writing for consistency’s sake. Really, though, I’m just like everyone else. I was taught to write it this way and I don’t care to change it. Even though this leaves a grey area, in my heart, I’m satisfied.

Special thanks to the folks I’ve mentioned who helped me on this post and of course, my wonderful editor, Meagan.

Here’s one more fact that didn’t make it into this writing: In 1952, Louis Braille was finally recognized by the French Government and his body was exhumed and reburied in the Pantheon in Paris, with other French national heroes. However, the Mayor of his home town insisted on having Braille’s hands removed and buried in the village cemetery. It seems that disagreements about Braille may never end.

Eat, Pray, Panic: Dubious Advice for Uncertain Times

Most people alive today can’t remember a crisis like COVID-19. But as I fumble my way through this strange new way of life, I find myself leaning heavily on lessons I learned ten years ago, during my first brush with life-or-death crisis. Maybe it’ll be helpful for you, too.


I was home alone on summer vacation, lounging in my sloppiest house clothes, when two men, professional thieves judging by the efficient way they ransacked my home, showed up in broad daylight to ruin my day. They kicked in our patio door, tracked mud all over the carpets, and convinced my sheltered teenaged self that I was a minute or two from death or, perhaps, something worse. Like the tough, brave gal everyone knows me to be, I cowered on my bedroom floor and hyperventilated a bunch.

It was fine in the end, other than the afore-mentioned mud-tracking and the disappearance of some of our possessions. No one got hurt, and I would go on to spend many more lazy afternoons in that house, safe and sound.

In the moment, however, it felt every bit the traumatic event that it was. For years afterward, I’d have bouts of irrational panic so strong that I kept many a friend and partner on the phone with me for hours until I had the guts to fall asleep.

What stands out to me now, far more than the horror of that experience, was the way we handled it as a family. Everyone came over—grandparents, aunts and uncles, cousins, the whole herd—and there were tons of hugs. We cried. We complained about the mud. We had a pizza party, because of course we did, and chatted excitedly about the family reunions and music festivals we would be attending later that week. I sent upbeat messages to all my friends—“I’m lucky to be alive but it’s all good, lol”—and absorbed their love and relief. I pulled out the gallows humour, and everyone let me do what I needed to do to keep it together.

We acknowledged the crisis, we made space for our terror, and we carried on. In my entirely inexpert opinion, there’s a lot I, and perhaps some of you, can take from that into the present moment, as we continue to deal with a much larger, more devastating situation.

Desperate Times Call for Desperate Feelings

While it’s vital that we keep cool heads in the face of hysteria, we need to make room for all that fear and bad feeling. Sometimes you need to have that good cry, or that venting session, or that long, dark night of the soul to be okay again.

I’m a pragmatic person who shrinks from drama, but I’ve sent a few melodramatic texts and made a couple of tearful phone calls over the last few weeks. It was good and cleansing and 10/10 would recommend.

This is not a time for us to police our own or others’ grief at the loss of normalcy, sadness at cancelled events, or fear for the fate of sick loved ones. These feelings are new, and the coping mechanisms might also be new. I’ve found myself praying after years of vague agnosticism, and I’ve never found hymns more encouraging than I do right now, even though I have no idea to whom I’m singing. And boy does the gallows humour come in handy these days.

Cry your tears, pray your prayers to whoever, and keep on truckin’.

Life is not Cancelled

Lots and lots of things aren’t happening right now, or have moved to digital spaces that can’t provide the same experience and present accessibility challenges for many disabled people. I am writing this from a place of extraordinary privilege, as I still have a job at the moment, but I am feeling the restless dissatisfaction of being cooped up at home, lacking my routines and suffering declining mental health as a result. Nothing feels right, and we’re far from done with this distressing new normal.

That said, I find it empowering as all heck to hang on to as many things as I can in the face of a crisis. I keep my work schedule as regular as I can, even though I’m working from home and the internal pressure to work extra hours is mounting. I’m carving out time to enjoy my hobbies and keep up with life admin as much as possible, given COVID constraints. I’m taking shelter in the things that haven’t changed, and still writing blog posts, for better or worse.

Some days I don’t have the wherewithal to pretend all is business as usual. Most days, in fact. But I leave the door open to the idea that life can and does trundle along much as before. Disappearing into a comforting, everyday task, even for a few minutes, is more restorative than I ever imagined. Everything may be on fire, but the kitchen still needs cleaning.

Crises are Special Occasions

It’s easy to forget this, especially for those of us whose lines of work involve interactions with a terrified public, but it’s not selfish or unseemly to prioritize pleasure. I, along with many others, am intimately acquainted with the pain and anxiety of strangers, and it is my duty, professionally and personally, to offer aid where I can, and compassion where I can’t.

Nevertheless, crises are special occasions, so I’m using the high-end soap. I’m wearing the outfits that make me feel competent and in control (except when I’m wearing my bunny onesie, obvs). I’m indulging in bubble baths and moisturizing, like some kind of grownup. I’m doing all the hackneyed self-care rituals that aren’t productive but are, in their way, the glue that keeps me in one piece.

So knock yourself out. Play the frivolous video game. Read novels all day long. Order the greasy pizza, and stuff your face with abandon. Bake those cookies. Make a mess. Create fancy, over-the-top cocktails with whatever’s in your house. Drink the good coffee. Let yourself enjoy things, tiny as they may be.

Yes, we need to take this situation seriously. That seriousness is saving lives. But sackcloth, ashes and self-denial aren’t helpful, truly.

Be Nicer Than Necessary

Look, 99% of us are doing our best out here, okay?

You’re scared, but so is the person you just snapped at for standing too close to you. You’re stressed, but so is the cashier you just yelled at because the store is out of toilet paper again. You’re tired, but so is the nurse who hasn’t slept in heaven knows how long. You’re frustrated, but so is the disabled person who needs help with groceries, or transportation, or access issues. You really need a break, but so does the communications professional, the call centre operator, the public official, the politician, the teacher, the employer whom you feel isn’t doing enough.

Be kind, because the smallest of gestures will stick more firmly than the criticism, the anger, the pointing fingers and blame games. Goodwill is thin on the ground these days. Be part of the solution.

Settle in for the Long Haul

This is not going to be over in two weeks. Like most significant crises, the impact will linger long after the life-or-death scenario has run its course. It took me years to be totally comfortable in my parents’ house after that break-in a decade ago, and it will take us months and even years to work out all the ways this pandemic has touched and altered us. Some of us may not make it through at all, and that harsh reality will not soften any time soon.

So, get as comfortable as you can, and assume that this is a marathon, not a sprint. Try to incorporate healthier habits into your lifestyle, so that you can take at least one positive thing away from these terrible circumstances. Prepare to support those around you as we brace for the longer-term effects of depleted social safety nets, overburdened health care systems, and economic instability. Think about who might need you, and what you can do for them. While you’re doing that, don’t forget to consider how this is likely to affect you, and accept the fact that you’ll need to get really good at reaching out for help.

Separator

We’re all in this together, as everyone knows. Acknowledge the gravity of this crisis. Make space for your terror. Eat some pizza. Carry on.

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.

Weightless, Wanted, Worthy

While reading Martin Pistorius’s powerful book, Ghost Boy, I was struck by a passage in which Martin, experimenting with a body that does not behave predictably, attempts to make breakfast for his partner, Joanna.

I forced the knife downwards, cleaving it to my will as it hit the side of the toast before skittering across the plate and leaving a glistening red slick on the table. I stared at the battered toast before looking at the floor, which was covered in coffee granules and sugar. The butter looked as if a wild animal had chewed it and jam had erupted like a volcano across the table. Euphoria filled me. I’d made toast, coffee was waiting in the cups, and the water had boiled—Joanna was going to have breakfast. I banged a spoon on the table to let her know I was ready, and a smile spread across her face as she walked in. “How nice to have breakfast made for me!” she said.

Some might interpret Joanna’s enthusiasm as pretense. As you read through the book, you quickly discover that while Joanna is fully aware of the many barriers Martin faces, she supports his efforts to try new things, even when they end in an imperfect, sticky mess. Martin and Joanna’s marriage is founded on genuine respect and validation, with no suggestion that she is giving anything up to be with him. Rarely have I seen such a beautifully balanced framework, where limitations are acknowledged but never allowed to overwhelm the entire structure.
Naturally, reading about Martin and Joanna got me thinking about my own relationship. My partner has a disability of his own, but it is invisible, and comes up so rarely I sometimes forget it exists at all. We live much like a couple in which only one party is disabled, and we both had to adjust to the different things we need from each other to grow and be happy.
In addition to needing all the conventional things, like love and companionship and the space to laugh with someone in the face of life’s trials, I also crave specific validation from my partner—the validation that says, “I acknowledge that you are disabled, but you are no less complete for it.” From day one, even as I walked him through my various barriers and how they might be an issue for him, he treated me like a whole, autonomous person, and nothing less. If I ever feel inadequate or out of place in the context of our life together, it is my own anxiety talking, not his. Again and again over the past few years, I have been caught off guard by the simple, implicit trust this man places in me every day, without thought and without a hint of charity. Strangers on the bus might wonder what I’d do without him, but he frequently asks me what he’d do without me.
What does this look like in practice? Mostly, it’s an intangible thing—more felt than seen, and usually unspoken. I can point to scores of small things that add up to a larger pattern, and that’s how I can best explain the dynamic.
For example, he asks my opinion on things, with the assumption that of course I’ll have one, and of course it’s as valid as anyone else’s. He doesn’t bombard me with questions about how “blind people” feel about X Y or Z. No, he asks about the best way to install a showerhead, or which ingredients would enhance a new recipe, or what political news of the week is most relevant. Far from assuming I mustn’t be knowledgeable about anything outside the realm of my disabilities and personal interests, he assumes that I am likely to know a little about a lot, and if I’m not sure, I’ll be straightforward about that. I don’t always have opinions or suggestions, but it is so novel and so satisfying to be asked as an equal—as someone who knows things and whose judgment can be trusted. It shouldn’t be so remarkable, but I think most disabled adults would agree that unless the topic is disability-related, our voices are often overlooked.
Like Joanna, my partner doesn’t expect perfection from me, but does expect me to experiment, and won’t ever shame me for the results. He would rather I demolish the kitchen cooking breakfast than have me avoid cooking altogether in case something goes wrong. It’s not that he humours me or enjoys watching me struggle. He simply expects me, as his partner, to contribute where I can and shed my irrational insistence on perfection. If I get hopelessly lost while attempting to conquer my travel demons, he’ll still be sincerely proud that I was brave enough to try, without resorting to empty praise or minimizing my mistakes.
As I’ve noted several times on this blog, living well with disability requires a great deal of self-confidence—or plenty of skill at faking it until you make it—because that confidence won’t come easily from outside yourself. If you don’t have faith in your abilities, you may struggle to find someone else who does. The less you feel you have a right to your place in the world, the less welcoming the world seems to be. While I’ve cultivated my own strong sense of self-respect, I’ve discovered it’s far more bracing when my partner reflects it back at me. I am fortunate indeed to make my home with someone whose faith in me exceeds my own, never hesitating to remind me I am whole.
I’ll return to Martin’s words, because he put it so beautifully: “I’ve lived my whole life as a burden. She makes me feel weightless.”
I, too, have lived my whole life worrying that I am too much like unwanted luggage. But he, together with so many others, makes me feel weightless, and wanted, and worthy.
From where I’m standing, there is no greater love than that.

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.

Let’s Hear it for the Small Wins

For me, the most exhausting part of living a disabled life is feeling the calling (or the burden) to educate those around me, and watching my attempts fail to take hold. I’ve been walking this planet for almost a quarter century now, and people I’ve known for most of that time still regularly send me undescribed images and grab me by the wrist when they should be offering an elbow. I make the same mistakes with my own friends and family, asking silly questions and continually messing up when I ought to know better. Time and time again, the universe keeps teaching me that regardless of how many marginalized groups you interact with, there’s no guarantee the lessons you learn will stick with you.

Then, there are the equally frustrating encounters with strangers—for instance, the man who, undeterred by my puffy parka and suit jacket, gripped my arm hard enough to inflict actual pain because he did not trust me to open a door on my own. Even after a swift and firm rebuke on my part—which never gets easier to do, by the way—he followed me around the elevator lobby, either unaware or uncaring that his assistance was not welcome. I can go through this routine a thousand times, and even when people are receptive and apologetic, the stress adds to the daily grind in ways that catch up to me, no matter how hard I try to be philosophical about it.

One down, many thousands to go. How uplifting!

Much is made of the big, sweeping changes, like inclusive hiring policies and game-changing legislation. Too little is made of quiet moments of reflection, advocacy, and individual triumph. It’s easy to get the community fired up about the stranger who grabbed you in the elevator lobby, but a lot harder to get them to rejoice with you when one more person finally “gets it.” Every day, one more taxi driver understands why service dogs should be allowed in his cab. One more teacher accepts that her fear of teaching disabled students is a doorway, not a dead end. One more parent respects a disabled child’s boundaries, as painful as it is to pull back and let go. These small but mighty turning points, the “I never thought of it that way” and “that makes sense now” and “I’m sorry” are happening everywhere, all the time. They don’t change the broken system that is so terribly skewed, but they matter, just the same. From what I’ve observed, so few people are talking about them.

Why not?

Seriously, why are we not doing more to congratulate each other for the ripples we are making? Why are we not doing more to tell others about those ripples in the first place? Maybe they’ll turn into waves, and maybe they won’t, but when’s the last time you stopped to truly appreciate the wins, tiny as they are? I know it’s been too long since I’ve stopped being sad about the times I couldn’t reach a person long enough to think about the times I managed to get through to them. Only now am I beginning to realize this is not the healthiest approach.

It’s discouraging to know that most people will repeat the mistakes we correct. Not everyone, not even most people, will remember your explanations and teachable moments. You have probably forgotten a lot of what you’ve been told over the years about how to treat people the way they’d like to be treated. I’m sure I have. We do our best, but we all slip up, no matter how informed and responsive we become. And, since no one owes us a thing and no one is obligated to educate us on the fly, we may make errors without even knowing it. I have not called out every single person in my life. Not even close. Who has the time?

Here’s the thing, though: we need to let the small wins define our lives as much as the losses. The stranger who asked if I needed help, and respected my wishes when I said no, should be just as significant to me as the person who couldn’t take no for an answer. If I’m willing to berate myself for failing to educate successfully in one instance, why am I not willing to be proud of myself when I do make a difference? Harm always seems more impactful than a neutral or positive experience, but I’m discovering that when we give the wins a little more space and sunlight, they have infinite power. Successful advocacy attempts from years ago are still able to give me solace and strength, just as unsuccessful attempts can still inspire feelings of anger and futility. Why, then, do I so often choose to dwell on anger, when I have so much else to celebrate? And why do I let other people decide whether my advocacy is meaningful?

I don’t have the energy for the level of advocacy I’d need to make the big wins happen—not usually, anyway. I have a busy life to live, and only so many spoons. I don’t have a string of Facebook-worthy successes with which to regale you, and the advocacy I do have time and energy to pursue would seem trivial to a lot of the people I know.

But last Christmas, I held my new nephew for the very first time, totally free of the anxious hovering and concerned muttering I’ve come to expect when I hold someone’s child. The narrative was less “awkward blind girl holding vulnerable baby,” and more “Auntie Meagan falling in love with her gorgeous nephew.”

Last week, my coworker asked if I needed help, then calmly walked away when I said I was doing fine, thanks.

Yesterday, I really did need help, and the person who gave it did not connect that moment of dependence with my competence as a professional. She has probably already forgotten she helped me at all.

Tomorrow, someone will ask me for help, and I’ll think no less of them.

With every day I keep trying to build bridges and promote crucial understanding, with every day I refuse to be permanently discouraged, someone trusts me a little more. Someone learns to better respect my boundaries. Someone promises they will never again grab my arm or lead me by my cane tip or badger me about not wanting a dog. More and more now, I am able to forget, for days at a time, that I was ever on the margins at all.

That’s not nothing.

That is, in fact, everything.

I’m always here for your small wins, just as I am for the times things go wrong. Get in touch, because as the ancient proverb goes, a shared joy is doubled, but a shared sorrow is halved.

Skills, Skills, Skills

For most people, skills are associated with employment, sports, and the arts. Unless we’re talking about early childhood development, few people think of cutting a steak or crossing a street as a “skill.” The era of lifehacks and “you’ve been doing these basic things wrong your whole life” articles is slowly changing that, but for the most part, nondisabled people don’t waste much time fretting over life skills. Surely such a term is too lofty for the everyday minutiae of life? Being highly-skilled implies specialization and, if you’re lucky, acclaim.

In the disabled world, the landscape can look quite different, in the realms of socialization and daily living. My writing and editing skills win me a fair bit of respect, for example, but what nondisabled people don’t realize is that I find travelling infinitely more demanding than writing, and spend almost as much time agonizing over the way I navigate my city as I do about the key messages I write every day.

Why do I spend so much time worrying? It’s not about safety or quality of life, so much: I know enough to function, and I’m getting better at asking for help. No, the bulk of the anxiety comes from the blind community’s obsession with skills. I call it “skillification,” where every minute task a blind person struggles with turns into a conversation about skills and methods and philosophies. A simple thread about knife technique can morph into a bloody civil war, as people scramble over each other to be heard, especially online. This commenter thinks there’s only one right way to use a knife. That one believes disabled people shouldn’t use knives—do you know how dangerous knives can be? A third thinks people should just do whatever comes naturally, and damn the textbook approaches. Another admits that he just gets his mom to do it. Someone else is squalling because blind people are so pathetic these days. At one point, somebody will probably mention American training centres, prompting someone else to start grousing about the NFB or the ACB or the IDB–insert alphabet soup here. Meanwhile, the unwitting author of this conflict just wants some tips on chopping the freakin’ onion.

Whenever I watch this play out, I always think the same thing to myself: “You had one job, blind community. Your job was to answer this person’s question as best you could, and you turned the whole topic into a judgmental philosophy discussion. You blew it. Well done.”

Don’t get me wrong; skills training is just about essential for any blind person who wants to live a reasonably independent life. In some senses at least, I wish I’d had more specialized education growing up, and I wish the focus of what I did receive had been more practical. But when complete strangers feel comfortable critiquing not only my methods but also my self-respect, the whole thing starts to feel a tiny bit absurd.

If you seek them out, you’ll find highly-trained professionals who will teach blind people the “proper” way to plug in a kettle or slice a banana. Books have been written about how to help blind people dress and groom themselves. I vividly remember a pamphlet my parents were given that featured a multi-step process for pouring milk. (Yes, it was that specific.) These resources can be handy, and I certainly appreciate experts who give on-the-ground advice, but the degree of dogma surrounding the precise methods people use to perform the most basic tasks is unnerving.

I believe all blind people should have access to skills training, and the freedom to explore alternatives. For people experiencing vision loss, relearning just about everything they already know how to do is a huge challenge, and they deserve to have help along the way. There is nothing wrong with excelling at “blinding,” as I like to call it, and skills gaps in areas like travel and etiquette can take a massive toll on quality of life.

I do, however, believe it may be time for the community to re-examine the way it perpetuates “skillification,” and how it can cause unnecessary shame and stress for people who are beginning to lose their vision, or who have never received much assistance in childhood. Generally speaking, the “official” ways in which blindness skills are taught vary widely, and there’s a lot to be said for finding what works for you and sticking to it. There’s also a lot to be said for being less willing to compare blind people to each other without accounting for the many other factors that influence a person’s adulting skills. I know plenty of sighted people who can barely use a microwave, but no one is sending them to a training centre.

In short, friends, do your thing, and do it in the way that makes the most sense for you. Do it safely, and do it well if it’s something that means a lot to you. Help others improve, if that’s what they want. Consider the skills that will help you attain your goals, and find ways to cultivate them. (Want to be invited to those business lunches? Better polish those table manners.) Before deciding something isn’t worth learning, understand the consequences of going without that skillset.

But if you have no interest in proper technique for serving five-course meals? If your preferred method for cracking eggs differs from the one your blind friend uses? If you never received official independent living skills instruction on how to bake a cake, but your cakes are no less delicious for it?

Well, then, don’t let the squabbling hordes get you down. You’re probably doing just fine.

Counting My Spoons: A Life Lived in Pain

It’s easy to be philosophical about blindness. I don’t have to stretch much to say it’s opened doors I never would have discovered if I were sighted. Blindness has compelled me to meet interesting people, acquire specialized skills, and develop a readily adaptable spirit. It’s not always fun—not even mostly—but it’s not without its upsides.

I am not philosophical about the chronic pain I’ve lived with for almost ten years. A decade of tension pain and migraines has weathered and exhausted me in ways I’m still attempting to put into words. If blindness is like the common cold, interfering with everyday life but easy enough to accommodate, chronic pain is like the flu. Just when you think you’re finally feeling strong enough to conquer your to-do list, or socialize with friends, or get some writing done, it sweeps over you, leaving you in a nauseated heap. At that point, there’s nothing for it but to slink off to bed, cancelling plans and sowing disappointment as you go.

Often enough, I can hack it. How else would I manage to hold down a job and maintain some semblance of a life? On most days, I grit my teeth, slather on the peppermint oil, and plaster on my smile. I carry tissues for when my eyes water with the pain, and can occasionally be found slumped over my desk with my head in my hands, but I can usually be depended upon to seem healthy and energetic.

Usually.

If you’ve ever spent any length of time with me in person, there’s an excellent chance I was fighting pain. If you’ve tried to arrange a phone call or coffee date with me, I’ve probably pulled out at the very last minute. If you’ve worked with me, you’ve seen me press my fingers into my forehead when I think you’re not looking. If you ask, I’ll say I’m fine. Most of you know I’m full of it, but it would be far too awkward to pursue the matter.

Loved ones have received text messages like “I’m not in pain today!” People who know me well have seen me cry, throw up, or lash out when my headaches are stronger than my resolve to seem normal. Managers have heard a dozen variations of “I need to leave early,” or “I need to sit quietly in this corner until this backs off.” On the very worst days, they get “I’m sorry. I tried, but I can’t come in today.” Housemates and partners have sent me back to bed after I’ve insisted I’ll be okay. Each time feels like a battle I’ve lost.

My fiancé deals with the brunt of it. No part of our relationship is untouched by the unpredictable whims of a body in pain. Dates are postponed, and postponed again, and eventually forgotten altogether. Dinners are skipped because my migraine has sapped me of my hunger. Harsh words escape because while my control is exceptional, it is not perfect, and pain makes me feel as defensive as a wounded animal. Domestic duties are shirked, and I watch guiltily from bed as he sorts laundry I am too sore to hang because I can’t reach above my own head. Many a time, he has cooked, cleaned, and run errands while I cuddle my heat wrap and take enough Excedrin to make an elephant tremble. I interrupt intimate moments, rolling away to hide angry tears; I am too tired, too sore, too weak to participate. Through it all, he is incredibly understanding, but the inequality is its own kind of pain.

And then there are the good days: days when I’m thrumming with energy, ready for anything. During these rare days, sandwiched between “okay” and “terrible,” I sing, clean, write, and tackle all the tasks I’ve left undone. I squeeze every moment of life I can into these precious pain-free days, balancing my enjoyment of the freedom with the knowledge that it never, ever lasts. My good days fool everyone into believing I’m all right. Unlike me, they still have faith that it’ll stay that way.

The crash, after a string of good days, is the worst.

I count my spoons with care, trying to account for the unpredictable. Do I spend this “good day” doing housework or writing? If I only have the energy for one social gathering, but I’ve booked two, which should I cancel? Which friend would I rather upset? Whose disappointment is easier to bear? Which task can I afford to push back? Since work is normally my top priority, and getting through it each day is costly, what should I do with the few hours before bed?

Know this, dear reader: my heart is so much bigger than my energy. My desire to connect with you, return your email, meet you for lunch, text you when you’re lonely, help with your creative project, is infinite. My ability to fulfill that desire is decidedly finite. If I’ve missed your call, cancelled our plans, failed to meet your deadline, ruined your good time with my exhaustion—I am truly sorry. I want to do better. If I had enough spoons to make everyone happy, I’d use them, because all my friends and all my family members and all others who depend on me are worthy.

So I ask everyone I’ve hurt, everyone I’ve disappointed, everyone I’ve let down: forgive me. I am getting better at this pain thing, but I am still learning. I don’t always distribute my spoons wisely. I overestimate my strength and overbook myself. I make promises I fully intend to keep, and need more time than I thought because work and basic housekeeping and mere survival take precedence. On good days, I sometimes forget to be careful, and pay for it on bad days. And, readers, I know you’ve paid for it, too.

No, I’m not philosophical about pain. I can never pretend it opens doors, or enhances empathy, or makes my world a richer place. Mostly, it just makes every little thing I do harder and more complicated. It turns an organized, driven person into an unwilling canceller of plans. I’m nothing if not adaptable, though—thanks blindness—and I’m slowly learning to count those spoons. I’m learning strategies to keep the pain from taking over my life. I’m becoming more accurate in measuring my energy levels and prioritizing what really matters.

In the meantime, I ask for patience, not only for myself, but for everyone you know who lives a life in pain. No, we’re not always fine, and no, we can’t always tackle what needs tackling.

But we love you. We’re trying. We’re playing the worst of all juggling games, and we are so, so tired.

But by God, we’re trying.

 

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?