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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Battling for My Castle

I’m not a home body, per se, but I do enjoy being home. My home is the one place where I am in my element. I know where everything is, I’m familiar with the obstacles, and nothing dangerous is likely to trip me up. A blind person’s home is often the lone setting in an ever-changing world over which they have any control. They likely don’t need a mobility aid to move around it with ease. They can feel safe, navigate efficiently, and enjoy a space that is adapted for their needs, instead of moulding to everyone else’s. In our homes, generally speaking, we are at liberty to be completely ourselves, with as much independence as possible.
It’s good to trip and run into things sometimes, to learn to orient in unpredictable environments, because the world won’t always be ideally set up in a way that’s safe and simple for blind and other disabled people. Hell, my parents were advised by someone from the Canadian national Institute for the Blind that they should routinely rearrange the furniture without warning me, just to keep me on my toes. They didn’t heed the advice, thank goodness, and only rearranged the furniture when they fancied a change. Like me, they believed it was important that disabled people have one home base where they can put those tools away and rest.
But the blind person’s home as sanctuary can only exist if housemates, partners and/or family members agree. And it can only work if the blind person in question feels they deserve such a home, or at the very least, a smaller space within their home that works well for them.
I didn’t consider this controversial. An alarming social media experience proved me wrong. As it turns out, plenty of disabled people don’t believe either of these things. They don’t think household members have any obligation to a disabled occupant and, more bewildering still, they seemed to think the very concept of being accommodated in one’s own home is unreasonable, untenable, even greedy.
Yes, many of the very people who insist coffee shops, grocery stores, schools, workplaces, and all manner of public spaces be accessible and accommodating don’t think that applies to their own families. Their own spouses. Their own parents and siblings and roommates.
How do I know this? I discovered it the hard way, by posting what I thought was an innocent question on social media, and being totally flabbergasted by the results – so much so I deleted the thread within the hour, convinced no good could come of it.
In the thread, I asked for suggestions to help my now-husband get better about keeping our home safe and blind-friendly for me. Nothing draconian. I wasn’t asking that he label every object in the house, or memorize complex organizational systems. I didn’t require him to arrange everything precisely the way I wanted, or clean to absurd levels, or, I don’t know, walk around with a blindfold so he could experience my suffering. Our shared desire was for him to learn how to be more conscious of things like open cupboard doors, pushed-out chairs and other hazards that are hard for me to anticipate and incredibly painful when bumped at a good clip.
I don’t gallop around my apartment, but I like to walk at a brisk pace, as anyone might in their own houses, without fear of stepping on an expensive tablet or sustaining mild to moderate injury. Piles of laundry on the floor? No big. Cluttered counters? Whatever, I’ll deal. Smashing into a protruding closet door or banging my hip on an open drawer? No thanks. I got so sick of toppling half-full water glasses discarded in precarious places that I began dreading the walk through my own kitchen. I wanted to stop bashing my toes and banging my head, and my partner was tired of watching me get hurt. He felt terrible, he couldn’t understand why he was finding it so hard to accommodate such a simple request, and he thought I might get some good feedback online.
Here is a paraphrased composite of what I got back. Lots of people were lovely and helpful, but those comments aren’t the ones I want to highlight today.

  • “You think it’s hard now? Try having animals and kids around.” (I have neither, so how is this relevant, exactly?)
  • “Are you sure he’s not doing this on purpose? Sounds like domestic violence to me.” (Huh?)
  • “Your expectations are way out of whack here. It’s his home too.” (Right, but I’m getting hurt. Regularly. In my own house. And he wants that to stop as much as I do, so…)
  • “This is normal. You just have to get used to it. I walk slowly and hold my hands out and stuff.” (In your own damn house? All the time? Do you use your cane as well?)
  • “You can’t micromanage a housemate and you shouldn’t try. That’s really controlling.” (But he’s my fiancé. And he wants to be better. He hits his head on his own open doors, you know. No one is having fun here.)
  • “Wow, he sounds like an idiot. Who can’t remember to close a cupboard?” (How understanding of you.)
  • “This is just the reality of blindness. You just deal. I do.” (Good for you?)

Thinly veiled judgment followed well-meaning but mystifying concern, with accusations of controlling behaviour bringing up the rear. All that, and very few good suggestions buried in the mix. I’d been prepared for people to ask why my partner was having such difficulty. I was even ready for the odd comment suggesting it was my own fault, because there ain’t no victim-blaming party like a disability victim-blaming party. I must admit, however, that I had not imagined I’d encounter such a large and diverse group of people for whom no one had ever, it seemed, made a real effort to keep their home environments safe and reasonably blind-friendly.
I’ve never lived in a perfect space myself, and I’ve had a few housemates who made no effort at all, but that didn’t stop me from aspiring to something better one day. That didn’t convince me I’d better give up altogether and shuffle along in a space designed for everyone’s comfort but mine. Did that make me especially entitled? Suddenly I wasn’t sure.
I’ve put off writing about this for something like a year, not because I didn’t have a lot to say, but because I was so confused and afraid to prod the hornet’s nest once again. I was second-guessing myself. Was this a wake-up call that I was being too demanding? Perhaps this philosophy comes from somewhere legitimate and understandable. If someone took the time to explain it to me, I might head some way toward comprehending it. Maybe all this cynicism stems from too many demoralizing conversations with kids and spouses and parents and siblings who just didn’t get it, who wouldn’t or couldn’t make changes, who didn’t see the point. It could well be I am unusually privileged to live with a partner who wants me to be as comfortable in my own house as he is, even if it means making a few adjustments.
But I don’t think I will ever agree that strangers owe me more than those with whom I share my home. I won’t claim to know what these commenters were thinking, but from where I’m standing, it looked like they’d persuaded themselves that it’s better to call someone controlling and unrealistic than to admit they might deserve more – that more might be possible if they ask for what they need, and do the work to make it happen.
Maybe this perspective isn’t strange to anyone else. Maybe I’m in the minority. But I stand by this: If you think your workplace and your local library and your school and your dentist’s office and your government should accommodate your access needs, but you don’t think this also applies at home, that’s a damn shame. The notion that your boss, your professor, your elected representatives are more obligated to you as a disabled person than your own family is inexpressibly upsetting to me. The very thought that you feel more comfortable advocating for your rights as a citizen or employee or voter than as a spouse or a housemate is heartbreaking. The idea that you’d belittle a fellow disabled person for wanting an accessible home, the same way you want accessible public spaces, makes me sad and angry and deeply frustrated.
So, okay, I’ll concede that practice is useful. Expect the unexpected, and all. I should hone my instinct for caution. I should be ready for anything when I’m out and about. But I have the rest of the world to test me that way–at work, at other people’s houses, out on the street. I don’t need or want that at home. When I come back from a long day of working around other people’s idea of well-designed spaces, after a day of dodging distracted texters and avoiding people’s pushed-out chairs, the last thing I want to do is more of the same. I want to sit back, relax, and know that when I get up for another cup of tea, I’m not going to need a cane or hands-out-shuffle-walk to get there safely.
My home is my castle. It is organized in a way that works for me, without unduly inconveniencing the one who shares it (he has since learned to close doors, and I can’t remember the last time I got hurt around here). My home is my one safe place, my retreat when navigating a world that isn’t designed for me becomes too much. I intend to keep it that way, and for that, I will not apologize.

Stronger (and Clumsier) Together

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

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

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

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

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

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

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

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

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

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

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

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

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

Who We Are When Life is Good

How much does society love talking about the impact of adversity on disabled people? The polishing powers of struggle, turning us all into sparkling gems? The motivation that comes from being told we’ll never be good enough, never measure up, never prosper? The myriad obstacles we’ve ‘overcome’ to be the people we are?

As a person with multiple disabilities, I can tell you with confidence that we love it a whole lot.

We love talking about it so much that you’ll rarely hear about anything else. Stories featuring disabled people centre around their troubles and barriers and the Debbie downers who insisted they’d never succeed. Disabled people are forever prompted: Tell us about the haters. The doubters. The people and institutions that stood in your way. Did all that negativity make you work harder? Did it make you stronger? Was it the driving force behind all your ‘inspirational’ achievements? Less often are we asked about positive sources of strength and power.

Societal hunger for tales of marginalized struggle is so voracious that I wonder if, on some deep, dark, shameful level, we quietly enjoy the idea of disabled people having to suffer in order to earn their place in the world. If access comes easily, if an environment is supportive and if barriers aren’t blocking a person’s path, do their accomplishments count?

Maybe not, or at least, not as much. No one wants to hear a story without conflict, so what’s the value of a disabled person’s story if it doesn’t involve plenty of misery?

This romanticism of struggle bled into the way I viewed my life, even as I was living it. I kept waiting for the adversity I faced to make me better, more resilient. Mostly it just made everything worse.

Logic dictated that being a blind person in a visual world would make learning, travel, and daily life more complicated. Of course debilitating chronic pain would make me less dependable, less inclined to pursue great things and explore my creative side. Why wouldn’t mental health issues contribute to my low energy levels and aversion to new challenges? Wouldn’t it be odd if they didn’t?

And yet, because I’d grown up surrounded by triumphant stories of struggle, of people being more successful precisely because they had suffered and come through, I expected that, if anything, my disabilities meant the bar was even higher for me.

The shoulds came thick and fast: my mental ill health should turn me into an unpredictable but admirable genius. My blindness should help me smash barriers to bits with superhuman aptitude. My personal haters and doubters should spur me to work harder, instead of making me feel unwelcome and afraid as they were trying to do.

Now, with the benefit of hindsight, I understand that I thrive best when my health is good and my environment is supportive. At present, I’m surrounded by positive, encouraging people who want me to flourish, and by God I’m flourishing. No longer do I cower at the very thought of a real challenge. Weirder still, I’m a bit of an adrenalin junkie. I crave variety and I need constant, low-grade stress to be content. Give me a new project, a tight timeline and vague instructions, and watch me crush it. If you’d told me all this five years ago, before I’d ever known such support, I’d have laughed in your face. “No no,” I’d say, “I’m more of a ‘scared of my own shadow’ type.”

As far as I can tell, I owe very little to pain and suffering. Adversity has been useful enough in some ways, but I will never claim to do my best work while beset by destructive forces. Shocker of all shockers: Not everyone soars in the middle of a hailstorm, and it’s strange and sad that we ever expected they should.

Perhaps you’re one of those remarkable creatures who functions well under the worst of conditions. Maybe you’re doing great during this pandemic, while most of the world flounders. It’s possible you’re one of those unicorns, disabled or nondisabled, who confronts terrifying situations—bullying, discrimination, six-lane intersections—and comes out of them more badass than ever. (Teach me thy way!)

But I’m not a unicorn. Many, many of my disabled friends are not unicorns, either, and we get down on ourselves when the troubles that are supposed to make us better end up tiring us out instead. Lots of us get bullied, discriminated against or hit by cars in six-lane intersections, and then we go home and cry because it hurts and it sucks and we hope it’s a long time before we have to go through that again. These things may not break us, and we might get a good blog post out of them if we’re lucky, but we sure as hell bend.

Let’s share some new stories — stories that make room for people who get things done in times of crisis, yes, but who also know the value of environments where they are supported and encouraged. I want to amplify stories about disabled people who get the tools they need, the access they deserve, and the inclusive communities they crave, and who accomplish wonderful things as a result.

I’ll start: Once upon a time, there was a disabled gal named Meagan who did okay in the face of adversity, but who wanted more from life than leaping from hurdle to hurdle. After years of being low-key miserable and unable to fulfill her potential, she found the access and support and community she needed. She blossomed. She accomplished some very cool things, which were no less valid because she wasn’t ‘overcoming’ anything more daunting than her own self-doubt at the time. Also, she had very few haters, and that was handy. She lived happily ever after, terrible mobility skills and nasty migraines and inconvenient mood disorder notwithstanding. (My blog, my ending.)

Not exactly riveting, sure. But it’s kind of a nice change, don’t you think?

Stay safe and healthy, folks, and make some space for happy stories.

Don’t Do it for Me: 5 Great Benefits of Describing Your Photos

As a long-time supporter of inclusive online spaces, I’ve got plenty of practice asking, begging, pleading, wheedling, entreating, imploring: pretty, pretty please, good people, describe the images you post!
I and fellow visually impaired people have shared help links, posted general PSAs, and asked pointedly for descriptions in countless photo threads. We’ve even argued with each other about whether blind people are morally obligated to set an example (we should at least try, don’t @ me). It’s practically a full-time job, and nobody is having fun here.
By this point, most people with any exposure to the visually impaired community know that describing images is the right, kind, inclusive thing to do. But many of us don’t always do the right thing – or if we do, we don’t do so consistently. After doggedly describing dozens of wedding photos with my very patient husband, I discovered that while the process is a ton of work, it’s rewarding in ways I’d never noticed before. I want you to notice them, too.
To that end, please accept this list of incentives to make images more accessible, which doesn’t include ‘because you just should, damn it’ (again, don’t @ me).


1. You Catch the Small Stuff

I’d gone over my wedding photos before posting them, but crafting alt text demanded that my husband and I scrutinize them more closely. In the process, he (and by extension, I) noticed small, gem-like details we’d originally missed, like a silly expression on someone’s face, or an interesting background object that changed the mood of the shot.
If you’re translating a photo into words, you’ll discover more than the literal contents of the image. A shallow description involves listing the objects in the frame and writing out any text that may appear. A deeper and more useful description means asking yourself what the image is trying to convey. What’s the significance? Why are you sharing it? Which details have you missed? Which memories, conversations, emotions does this analysis inspire? If you’re posting a meme rather than a personal photo, what context or added humour does the image lend to the text?
It sounds like a homework assignment, but it’s really quite fun!

2. You Learn Things

This is perhaps less applicable to a fully sighted persons’ experience, but as a blind person working with someone with vision to create my descriptions, I found myself learning things I’d never thought to ask about. They ranged from the mundane—there was a heart cleverly hidden in one of our wedding signs—to the mind-blowing (my dress had an intricate vine pattern I somehow missed). I also learned that you can see raindrops in photographs, and that mirror images look very cool in pictures for some reason.
The revelations aren’t likely to be overwhelming, but in taking the time to really break a photo down, you’ll occasionally stumble upon exciting information you’d never have thought to seek otherwise. You may also gain insight into what makes a compelling photo.

3. You Get to Be Creative

Not everyone relishes playing with words, but describing images is uniquely challenging because it demands that we find alternative ways to express visual elements. Even if you’re posting something as simple as a nature scene, cute kitten photo or promotional poster, dreaming up descriptions encourages you to stretch creatively, especially if you want your visually impaired audience to have roughly the same experience your sighted audience would.
I knew, for example, that sighted people would laugh at goofy photos showing the mingled joy and anxiety on our faces as we ran to the limo through torrential rain. We wanted our blind friends to share in the humour of such formally dressed people looking so silly and yet, so happy that no amount of rain could dampen their joy. To do that, we had to move beyond a utilitarian description like “wedding party runs through rain,” and take the time to describe the interplay of the serious occasion, the comic interruption, and the radiant happiness underpinning it all. Our efforts were so successful that numerous blind friends approached me to thank me for providing such engaging descriptions. Where they’d normally skip right by someone’s wedding photos, a lot of people took the time to slow down and enjoy mine. That may not be enough, in itself, to sway you, but gratitude is a lovely perk, don’t you think?
Besides, writing captivating descriptions is more fun than it sounds.

4. You Make Your Content Easier to Find

Let’s say you’re not posting ravishing shots of my rain-splattered face (easy there, I’m attached). Let’s suppose you’re posting material to your website or your blog or your business Facebook page. You want people to find you, which means you’re doing everything you can to improve search engine optimization. You’re using brief, descriptive page titles and body copy that’s dense with keywords. You’re ensuring your material matches what people are likely to search for, and you’re even buying ad space to make yourself more attractive to search engine algorithms.
Why not take it a step further? Add alt text to your images, and give people yet another way to find you. Alt text descriptions improve SEO, and it won’t cost you a dime. Plus, it helps blind people give you their money and share your content with the world. Who says you can’t be a good citizen and boost your brand at the same time?

5. You Avoid Hassel

When you choose not to describe your photos, you risk people like me sliding into your DMs or plunging into your comment sections with our alt text evangelism. Most of us are nice about it, admirably nice given how often it comes up, but who wants to hammer out slapdash descriptions on the fly because some rando named Meagan keeps bugging you? Not you!
I jest, but I can’t stress this enough: I frequently lack essential info because it was buried in an image, and that means wasting my time (and yours) trying to figure out what I’ve missed. If the description is there to begin with, even a basic one, everyone wins.


Go on. Appreciate your images on a deeper level. Learn new things. Make more money. Gain more followers.
More importantly, feel really good about yourself, because you are helping make the web a better place, one accessible image at a time.
Do the right thing. Describe your photos.

Dreaming of a Quiet Christmas

Last Christmas, I gave you my—

Okay, let’s try that again, sorry.

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

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

Readers, it was glorious.

At least, it was for me.

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

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

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

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

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

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

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

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

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

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

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

You know, since I’m dreaming and all.

Guest Post by Elise Johnston: Guide Dog Gaps and Anxious Hopes

For many blind people, the gap between guide dogs is something to be dreaded. Retiring a dog is a devastating life event, especially if it happened earlier than expected.

For Elise Johnston, the early retirement of her second dog was a little more complicated. In theory, getting on a waiting list for a new dog as quickly as possible made perfect sense: Her mobility was drastically curtailed without a dog by her side, and getting repeatedly lost on the way to work was getting old, fast.

And yet, even with all the logic in the world pointing toward ‘new dog,’ Elise found herself frozen, as much by indecision as harsh Canadian winter.


Winter 2019: To Dog or not to Dog

So it’s February and, because I am an unmitigated genius with an IQ almost as big as my shoe size, I have retired my second guide dog early. For the first time in more than 15 years, I am using a white cane on a daily basis.

People ask me about getting another dog, and my frozen Popsicle brain offers up a gloomy “No.”

On the face of it, ‘no dog’ makes no sense whatsoever. It’s February, as I say—February in Alberta. It’s so cold that pipes in a downtown hotel have frozen and burst, turning the surrounding street into a skating rink. I’ve started a job in a new building and am only slightly familiar with the root, which includes a convoluted street crossing, and requires laser-precise positioning to make it onto the correct sidewalk.

Gobs of white ghost poop are piled in drifts over all the tactile landmarks. The wind is singing an off-key lament passed my toke-covered ears, obliterating any sound cues, like the audible signal that marks the crosswalk. Memories of being knocked down by a car, which then stopped directly on top of my foot, flash through my frosted-over brain.

My first guide probably saved my life, not with expert car blocking skills or anything, but because he made navigating university possible, given the lack of orientation and mobility training available where I live. And having university to escape to after high school was unquestionably life-saving.

My second guide gave me the confidence to move out on my own, live independently, and get to all the appointments one needs to get to when one is gender transitioning. You could say he saved my life too.

I love dogs. I love the flapping of their ears when they shake themselves, the thump of their tails on the wall. I love giving tummy rubs and getting kisses. Dog hair is a condiment I have no objection to.

But now, ice-cubed and tearful, after being lost yet again during the coldest February on record, I have big problems with getting another dog.

Spring 2019: What We Don’t Talk About When We Talk About Dogs

You go to a job interview and the first five minutes are spent, not discussing your qualifications, but the life history of the dog that accompanies you.

You walk into the kitchen at work and the coworkers gathered there wish your dog, not you, a good morning.

You retire said dog, and when you switch positions the boss in the new position goes, “Oh dear, where’s your dog?”

A dog is novel, and cute, and lots of people like dogs. You, on the other hand, are an icky blind person.

“I have nothing in common with an icky blind person,” says (insert person). “Better just talk to the dog, or about the dog, or tell stories about my own dog.”

You tell yourself: You’re having so much fun without a dog. Sure you wake up at night and listen for the breathing that should be there. Sure you can only pet your sweaters. Sure it’s much harder for you to go places since you don’t have regular access to mobility training. But being upstaged all the time? Having to deal with incessant questions? Giving one of your best friends a hug and listening to her sneeze for hours because of her allergies? Making friendly with people who are besotted with your dog for no good reason other than its “OMG a dog!”

Also, dogs can be inconvenient at sleepovers. They require attention and extra executive function and vacuuming.
And having a dog, loving a dog, means one day you have to say goodbye, and your heart becomes a chew toy that they’re squeaking, squeaking, and suddenly not squeaking because they’re not responding to the antibiotics for their pneumonia and their cortisol levels are sky-high and your family has asked you what you want to do…

Do you want to get another dog? Really?

Fall 2019: Some Mad Hope (and All the Anxiety)

It’s hard to get a handle on why I submitted my application. Probably it was because one of my best friends has a guide and witnessing their bond and the way they work together gave me hope that things could be different. When I did my home visit with the school I am attending for my new dog, we discussed techniques I had never heard of — simple orientation and mobility stuff that would have made a huge difference working with either of my old guides.

There’s regret now when I think about what might have been possible with my previous dogs. Regret, and a new anxiety about how much I still have to learn. This anxiety piles up on top of the existing anxiety when I think about interacting with people on an exclusively dog-related basis.

Why am I doing this again? Do I like being an anxiety sandwich? Have I surrendered to my fate as auxiliary to a much more adorable creature? Am I using Meagan’s blog as an alternative to talk therapy?

But maybe things really could be different. Third time’s the charm?

Spring 2020: Notes From Elise’s Future Dog

You know what’s relentlessly awesome about being a guide dog? It’s having someone who appreciates everything about you—who endures home interviews and goes on waiting lists and rearranges their life so you can be on their team. It’s knowing someone loves you for your brains and not your body. It’s knowing that, while your handler doesn’t love everything about being with you, it’s all worth it in the end.

Sighted people won’t shut up about how beautiful I am. They’re always going, “Oh look at the beautiful dog!” Nobody except Elise goes: “Seriously why don’t you join MENSA?”

I get to go for lots of walks downtown where there’s always interesting stuff going down, like political marches and half marathons and shady drug deals and gay couples walking their cat. Also also,
Elise knows all these totally-good smelling people who are by default my best friends because they’re her best friends.

The other day I got to meet Elise’s retired guide dog, who is kind of an idiot, and he told me that Elise goes on adventures to hospitals and writing conventions and vegan restaurants, which sound like good fun to me! He also warned me sometimes Elise has trouble getting out of bed or off the couch, in which case it’s my job to pretend like I have to go to the washroom really bad, even if I don’t, or to stick my nose underneath her blanket and give her kisses, especially on her bare feet.

I mean, I was going to be a guide dog anyway, and I think I could have done a lot worse. Elise doesn’t drink or smoke or listen to music at obnoxious volumes. She’s done all the boring university already. I feel like she’s finally kind of sort of got her life unstuck and can focus on the cool.

We’re going to go new places and smell new people and chew on new bones and I’ll probably end up saving her life down the road, just saying.

Life is short and that’s why it makes a difference who we spend it with. Am I right? Am I a good dog?


Looking for more? Check out Elise’s previous guest post on gender transitioning as a blind person: “Smart People, Stupid Questions, and Knowing What We Cannot See.”

The Red Robin Effect

Red Robin: a comforting, bustly sort of place where the food and music compete to see who can be the cheesiest. The birthday rituals are silly, the menu puns are cringe-worthy, and the fries require hours of hard work to digest. It’s one of my favourite places, and now that all locations in my area are closing, I think it’s time I wrote about everything it has meant to me.

I moved to the City of Edmonton to attend university at seventeen—a wide-eyed small-town girl with woefully little knowledge of what was about to hit me. Being visibly disabled in a rural setting came with its own challenges, but given enough time and community involvement, virtually everyone felt comfortable with Meagan and her long white stick. I wasn’t always included, but I was, at the very least, known.

Without warning, after seventeen years of solid familiarity, I was in chaos. I didn’t know anyone, and nobody knew me. My blindness fascinated and frightened people. I could no longer walk into a new environment and assume my welcome. Strangers had questions. Acquaintances had more of them. I had never felt so visible and at the same time, invisible. Reduced to a curiosity, I felt unmoored, lonely, and unsure of where I belonged. Everywhere I went, I was an inconvenience, or a safety concern, or another burden busy people didn’t have time for.

Not so with Red Robin.

Given that my residence building was steps from the nearest location, I found myself visiting regularly. At first, it was merely the most logical place to take just about everyone; the food was reasonably tasty and even more reasonably priced. I soon realized I was enjoying far more than the gooey cheese sticks and nostalgic mid-2000’s playlist, however. I was experiencing, for the very first time outside my inner circle, unconditional inclusion I didn’t have to earn.

The staff knew about their own braille menu, (by no means a given), handing it over without batting an eye. Servers nearly always described the location of dishes and drinks when setting them down, as casually as if every single diner needed the same detailed information. Plenty of extra help was offered, but never foisted upon me. When I showed up with visually impaired friends, no one seemed flustered or out of their depth. When paratransit took ages to pick me up, they let me hang out in their comfy seating area without a whisper of annoyance. Not once in seven years of frequent visits did I feel like anything less than a valued customer—a customer worthy of the same professionalism everyone else received as a matter of course.

It doesn’t sound like much, does it? But several of my friends agree that, whether through diligent training or a generally positive culture, Red Robin has cultivated broad, environmental inclusion of their blind customers on a grand scale few other businesses have managed. For me and for many, they have danced delicately along that razor-thin line between help and hindrance; attentiveness and intrusiveness; kindness and condescension. And they have done so in a way that will always set them apart.

My husband and I enjoyed one final dinner at Red Robin, waxing nostalgic and eating far too much. We reminisced not only about our first date there, or the many happy evenings I’d whiled away as a student, but also of the effortless way I’d fit in. Red Robin had taken on an almost mythical greatness in my mind. It had become a safe haven where I could just about guarantee I wouldn’t be spoken to like a child. They’d never have a menu I couldn’t read independently. The servers wouldn’t talk to my tablemates to find out what I’d like to order. No one was about to grab me without asking, tell me a menu item I’d chosen was “too hands-on” for a blind person to manage, or refuse to help me operate the debit machine (the idea that blind people can and do pay for their own meals is too much for some, sadly). In short, I could walk into any Red Robin, any time, and expect to be treated with dignity.

I no longer have a starving student’s appetite, nor am I able to gobble fish and chips the way I once did—at least, not without plenty of protests from a stomach that has been spoiled by a healthy diet. I won’t miss the bottomless fries or the syrupy cocktails. But I will miss the incredible luxury of knowing that I can come through that door with my long white stick, and sit down to a peaceful dinner like everyone else. I’ll forever be grateful to all the folks at Red Robin for giving me the gift of forgetting, if only for half an hour, that life isn’t always this simple.

Meagan and her husband face each other, smiling and holding hands. She wears an ivory mermaid-style wedding gown covered with seed pearls. A veil is pinned over her hair. He wears a black tuxedo. A wooden archway, decorated with flowers, is in the background.

It Takes an Army: How to Enjoy Your Wedding Without Losing Your Mind

It takes at least two to get engaged.
It takes at least three to get me into a wedding dress.
And it takes an army to help a blind, migraine-prone, overstressed and undercaffeinated introvert survive her wedding day.
Here’s how we managed it—i.e. here’s who did all the hard stuff while I freaked out—with some advice you didn’t ask for. You’re welcome.


My husband and I wanted the big wedding—really. We wanted a massive party where more than a hundred people could eat, drink and be merry with relative abandon. We wanted dinner and dancing and all the lively, extravagant trimmings. We wanted it to take place in a rural (read: affordable) location, access barriers and all. We wanted everyone to have a fantastic time despite the pitfalls…
And we wanted it to be enjoyable for a bride whose inability to handle loud noise, confusing environments, and tricky logistics is legendary at this point.
If you want all that to somehow reconcile itself, you’d better have an army. Good thing I had one!
First and foremost, it takes a patient, forgiving fiance, because if you can survive wedding planning without driving each other insane, you’re winning.
Pro tip: Marry the right person. Helpful, I know. I’m here all week.
Second, it takes incredible wedding planners. Mine weren’t afraid to describe visual elements, make decisions when I was like, “I dunno,” build archways, haul benches, and drive the blind guests around, because my location was the worst.
Pro tip: Hire my family.
Next, it takes a stellar wedding party. Fortunately for my sanity, mine have excellent de-escalation and emergency caffeine-fetching skills. One of them knew where to find good sushi and wine at a moment’s notice—a lucky thing, considering my wedding-eve-jitters. (For the record, I was freaking out about tripping over my dress, or ruining my makeup in some irreparable way. The joining myself to another human being for the rest of my life bit was chill.)
Pro tip: Find groomsmen and bridesmaids who can make anything fun, even photos. A willingness to do a fortifying shot minutes before the reception helps.
Then, it takes photographers who aren’t afraid to give precise, detailed descriptions, down to where chins should be, because that stuff is not super intuitive when the bride and groom are both visually impaired to varying degrees.
Pro tip: Ideally, you’ll select photographers who don’t mind physically posing you, because you will eventually admit you have no clue what wedding photos usually look like. Oh, and make sure your photographers tell you when it’s okay to stop smiling. Your facial muscles will thank you.
After that, it takes a very special officiant. Ours, a beloved auntie (I have a lot of them, they are lovely, 10/10 would recommend) knew our quirks, so she could serve the dual function of keeping us calm while preventing things from getting too serious. Her improv skills came in handy when we realized, halfway through the ceremony, that nobody had the rings.
Pro tip: A wedding isn’t a wedding until you’ve invoked Gandalf at least once, and you should probably throw in a Dumbledore reference, just to be safe. The rain held off long enough for us to get hitched, so I guess we had our bases covered.
Of course, it takes hilarious MCs. Ours kept us in stitches all evening. We gave them a mile of leash, and they ran with it. (I think at least one person was a little scandalized, but no pearls were clutched in the making of this wedding.)
Pro tip: If it brings you joy to laugh at yourself, work out your limitations ahead of time, then let them “go there.” This is your day. If you’re cool with a wee bit of a couple’s roast, dig in.
It takes an entire battalion of friends and family to play the piano, travel long distances in rough conditions, tie a zillion twist ties, stand around in the rain, help a load of blind people navigate a bewildering buffet, take beautiful pictures, and keep the hair from falling out of my head.
It takes coworkers who throw parties so thoughtful that I broke my no-crying-at-work rule (again).
It takes people who give braille cards, and tactile cards, and hand-drawn cards, and fabulous hugs, and jaw-droppingly generous presents.
It takes a task force of “virtual bridesmaids,” of all genders, who have listened patiently to an entire year of rambling, stress cries, indecision, and other tirades.
It takes a tribe that made a loud, chaotic, confusing environment fun, even for my husband and me, worriers extraordinaire.
In short, it takes an army of love, creativity, and grace.
Pro tip: Find your army, big or small, and let them carry you through this. It’s more fun that way.

Meagan, wearing a colourful summer dress and tall black boots, smiles as she touches soft, fuzzy leaves. Purple petunias are visible in the background.

Meagan’s Guide to Stylish Farewells: On Coming to Terms With Vision Loss

Sighted people are always caught off guard by how casually I treat my vision loss, whose inexorable progression began the day I came into the world. While I understand the assumption that vision loss is all sadness, all the time, that isn’t the case for me. If my vision was ever good enough to accomplish useful tasks like driving, or fun things like painting, I’d likely be far more bereft. As it is, what little vision I was born with is more liability than blessing, becoming increasingly burdensome as it dwindles.
The one thing I occasionally allow myself to mourn is the loss of colour perception. Though my understanding of colour was never perfect, my childhood is filled with memories of gazing with fascination at anything brightly coloured, especially in nature. Now that I’m all grown up, and my vision loss is more advanced, I don’t reliably notice colour unless I make a deliberate effort. Even then it’s hit or miss.
I’ve always known I’d eventually lose all my colour perception, but over the past few months, I’d begun to view that loss as part of my present, not my future. It was no longer on the horizon. It was upon me, happening in real-time, and I couldn’t deny that it seemed to be slipping away more quickly every day.
The way I saw it, I had two options: I could lament its vanishing and write more soppy posts about it, or I could give it a send-off worth remembering. I chose the second option.
I wanted to infuse this time in my vision loss journey with joy and gratitude, focusing on what I had rather than what I’ll lose. To that end, I enlisted the help of my charming and devastatingly attractive friend Krissi (did she pay me to say that? You decide.)
She fell in love with my vision (ha ha) and planned the most colourful day she could imagine: a plant crawl. All day long, we visited various greenhouses, including the Muttart Conservatory and Greenland Garden Centre, exploring plants from around the world. There was more colour than I had the capacity to process, and it truly was a feast for my eyes and soul.
Surrounded by vibrant flowers and exotic trees, I got all the colour-gazing I could ever want. I also discovered something else. Interacting with plants is a surprisingly tactile experience, if you have a brave and patient plant expert like Krissi nearby to keep you from impaling yourself on a cactus. I’d always thought of plants as delicate things that didn’t like to be touched, and there was the looming threat of insects that would make their displeasure painfully known. In these climate-controlled environments, I was able to gently acquaint myself with the glossiness of banana leaves and the shapely curvature of a fruit tree. I stroked roughly textured bark and soft foliage that rivalled felt. I found a leaf that looked exactly like a feather, with its slightly downy grain. I touched leaves so fuzzy they felt like peaches, and other leaves that felt like nothing so much as the rough but cozy blanket my grandfather might drape over the back of his rocking chair. I discovered creepy-feeling succulents and graceful, delicate herbs. Krissi nearly had to tear me away from a plant that appeared to have sprouted its very own umbrellas. There was so much to touch that I occasionally forgot I was primarily there to look.
The biggest surprise came when we stopped off at Krissi’s house so she could teach me the tricky art of flower arrangement—another chiefly tactile activity. I assumed it was all about doing whatever looks prettiest, but I soon realized that what felt symmetrical was the most reliable test for what would look fabulous in a vase. To my surprise, I learned that rookies use their eyes, while pros use their hands. Krissi patiently showed me how to trim stems, strip leaves, and thread flowers through my fingers in an awkward X shape.
Thread, twist. Thread, twist. Thread, twist. Snip snip snip…
Boom! I suddenly had a gorgeous bouquet, which made it look like I really knew what I was doing. (I still don’t, but photographic evidence of my triumph will forever suggest otherwise. Tell no one.)
As I cleared away the pile of stems I’d cut and sat back to admire an arrangement so bright I could actually see it, I experienced the air of celebration I’d hoped to inspire. I knew I’d soon see the world in shades of grey, and that not long after that I’d see nothing at all. But in that moment, I sat back and absorbed the incredible gift I’d been given, which was no less wonderful for its impermanence.
I’m sure that sadder times are ahead of me, with a blind community that is so often dismissive of partially sighted pain. I do not expect to remain this philosophical and high-minded about it all. I will have days where I’m grumpy about this slow march to darkness, even though I am already blind, for most intents and purposes.
But I’ll always have the comforting knowledge that I can live well and happily, colour or no colour, light or no light. And I’m lucky to have enjoyed both, if only for a while.