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.

Social Distance and Silver Linings

Long walks in the woods are pretty exciting, particularly in a time when going outside at all is a coveted luxury. So when my husband and I explored some walking trails near our apartment on a crisp Saturday morning, I was prepared for that singular invigoration that only trees and birds and green space inspire in me. (Plus, the buzzy, six-legged monsters hadn’t woken up yet. I take joy wherever I find it these days.)

What I did not expect was the exhilarating feeling that I’d stumbled into an alternate universe, one in which visibly disabled people could exist in public spaces without having their service dogs stroked, their canes stepped on, their hands grabbed, their wheelchairs moved. In this parallel paradise, I strolled along, unbothered, while people around me kept their distance politely.

I’ll say this again for the people waaaay in the back: People stayed out of my way, and they helped me stay out of theirs. Nicely. With their words.

Like, without me asking.

Or insisting.

Or pleading.

It got weirder. I also noticed—can you tell I haven’t been out since the pandemic clamped down?—that people were doing useful things like giving verbal descriptions of where they were, which way they were heading, and how best to avoid bumping them.

“Coming up on your left,” said the jogger, giving me ample time to move out of her way.

“Coming up on your right,” said the cyclist, ringing his bell in an uncharacteristically helpful manner as he whizzed by.

“Wow, I love her hair,” said the random stranger to my husband, speaking right over my head as usual. (Some things don’t change, not even during global pandemics.)

We spent about an hour on the trails, encountering many others as we went. My husband and I were both nervous, since my vision is useless and his isn’t perfect. Would people keep the required two metres away? Would we have to swerve to avoid others? Would anyone be paying attention but us?

Our worries weren’t as irrational as they may sound. An environment in which the average person doesn’t keep their distance, doesn’t respect personal space, is what I have learned to expect. It’s what many people with visible disabilities expect, so much so that angry posts about being grabbed by strangers on the sidewalk, on the escalator, on the bus, in the workplace are banal at this point.

This strange new world in which everyone cultivates self-awareness while they’re out and about, in which it’s not okay to touch someone, disabled or otherwise, is not something I’ve experienced before. It’s something I’ve asked for, repeatedly. It’s something I’ve tried to explain to countless folks, many of them as baffled at the end as they were at the beginning. It’s something that gets people saying defensive things like ‘I’m just being nice,’ and ‘I’m just helping.’

It took a pandemic, it would seem, to hammer the point home. Now that people live in fear of unsolicited touch, they stay away. They use their words. They shudder at the very idea of being grabbed out of nowhere on a street corner, or of doing the grabbing themselves. Who would do a thing like that in these times?

Now they get it. Sorta.

As many countries around the world sketch out relaunch strategies, people are asking each other what will change after COVID-19 has run its course. They talk about social changes, political recalibrations, a more compassionate, evolved society, or one that collapses altogether.

I don’t pretend to know what the world will look like when this is done, nor do I know how subsequent waves of the virus will affect a population that is already traumatized and grieving.

For my part, I can’t wait to be able to gather again, to shake hands without anxiety, to hug my loved ones. But if we can hang on tightly to the habit of deliberate physical distancing, especially out on the street, I think many disabled people will move through this world with a lot more confidence. I know I will.

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.

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

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

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

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

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

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

Well, no one but me.

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

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

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

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

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

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

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

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

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

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

Am I getting warmer?

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

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

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

“You Got a Permit for Those Feelings, Ma’am?”

When we think about gaslighting, we tend to focus on calculated, premeditated abuse, carried out over time for some nefarious purpose. We rarely think of it as something unconscious and unintentional — something we do to ourselves and each other, in some cases with disturbing frequency. Gaslighters are vindictive, manipulative bullies. Gaslighters aren’t decent, well-intentioned folks in widespread, shared denial. And gaslighters certainly aren’t members of marginalized communities who have learned to second-guess their perspectives. Perish the thought!

I’ve generally thought of gaslighting as something that rarely happens to me, something other people deal with, until a recent moment of public humiliation at the hands of well-intentioned strangers brought me up short.

Two recruiters for some sort of club approached my sighted friend and me, diving straight into their pitch without preamble. My friend grabbed a pamphlet, but I was totally in the dark about what was going on and who these people were. They spent the next few minutes talking about me as though I were an engaging art installation.

“Can she speak?”

“She can speak, right?”

“Our club is for, you know, all individuals.”

“Even she could participate in this, I think!”

“She’s okay, right? She can…”

“I know you’re guiding her today, but we could work something out…”

“And she really can speak?”

During this onslaught, I struggled to get my bearings while one of the strangers held some food item, a bag of chips as it turned out, right under my nose without explanation. I kept interjecting, trying to redirect their attention, to demonstrate my ability to have this conversation for myself, but nothing I said got through to them. Meanwhile, my poor friend stood there, horrified but unable to extricate us from the situation.

Finally, my attack of politeness paralysis lifted: “Excuse me but we really need to go.”

As we power-walked away, my friend swung between apologizing and expressing shock.

“Did that just happen? I am so so sorry! I didn’t know what to do. Did that seriously just happen?”

I assured her there was nothing she could have done differently and thanked her for acknowledging my own shock and embarrassment. We parted ways, and I was preparing to shove this incident into my trusty ‘shit happens’ folder when I realized something at once forgettable and bizarre: I had thanked her for being upset about this. The first articulate thing I’d thought after it happened was, thank God I had a sighted person with me. I was hugely grateful to someone for whom this sort of treatment was an anomaly, not an inevitability, the way it is for me. I was relieved that she’d been there, with her working eyes, to assess my feelings and find them valid.

Why?

This realization crystalized further as I sent a message to a blind friend I knew would understand.

“The sighted friend I was with was more upset than I’ve ever seen her. That gave me permission to be, I guess. I dunno. I’m still shaking.”

There it was, in plain language. Somewhere along the line, I’d become so distrustful of my own perceptions of reality that I needed validation, sighted validation in particular, before I’d let myself react. What was this self-diminishing nonsense, and when had it started?

If I’m being truthful, this subtler form of gaslighting began early, and it came from just about everywhere. Remember those decent folks I mentioned earlier? The ones in widespread denial? I believe I learned this pattern, however unwittingly, from kindly people who couldn’t bear the idea that they could do real damage without even knowing it, who clung stubbornly to the belief that intentions trump results, always.

How many times had I been encouraged to be extra patient, unfailingly gracious? People just don’t know what to do with me. How to talk to me. How to work with me. How to live alongside me

How often had I been reminded, by sighted and blind people alike, not to be too hard on people because they didn’t know any better? They’d never met someone like me before. Not everyone has read my blog. They didn’t mean it. I read the situation wrongly. They meant well. I must have misunderstood.

And how many comments have I heard and read, online and off, asking for sighted validation? Was anyone sighted with you? Did anyone see what happened? Maybe you misheard? Maybe it would help if you could see their faces? Most communication is nonverbal — maybe you’re just not good with social cues? Maybe there was something going on you couldn’t see?

Then there is the gaslighting I have done to myself. Even a sighted person couldn’t have done this, known this, understood this, accomplished this, noticed this, fixed this. I had a sighted person check so I know it’s okay. I need a sighted opinion on this please. I wish I had a pair of eyes to verify this.

Sure, sometimes I misunderstand things, miss out on context, because my eyes don’t work. Sometimes I need someone’s vision: Did this document print okay? Is this picture what I think it is? What’s on my screen right now? Did she look upset or was she smiling when she said that?

But when I get to a place where either a sighted person was there to witness it or it didn’t happen—either a sighted person thinks what happened to me is discrimination or it doesn’t count—something is very, very wrong. And I doubt I’m the only one doing this self-defeating dance.

I should be leaning on all my friends, sighted and blind, for everyday validation, the kind many of us crave when we’ve been through something difficult. I am comforted when people join me in my anger and acknowledge my shame. What my sighted friend did for me that day, standing beside me, getting offended right along with me, was good and kind and helpful.

The wrongness lay in my intense relief that her sight, more than any of my own senses, gave me permission to feel my feelings; that I worried about confiding in too many other friends for fear they’d poke holes and imply I shouldn’t be upset; that some internet commentator would materialize to tell me I don’t get to be offended; that any of this would influence me so easily.

The fact remains that I was there. It happened to me, not a friend or coworker or random internet troll. I should be able to own my reaction and sit with it a while without guilt or undue doubt. I should be able to confide in some friends, take in their support, ignore any advice I didn’t ask for, and move the hell on with my life.

The good news is that I believe I’ve learned my lesson. This incident should have been an annoying blip, not a miniature crisis of faith in my judgment. Speaking of faith, it’s time I placed more of it in my perception, less of it in hidden, well-intentioned gaslighting, and mastered the art of sitting still with what hurts me without picking apart that hurt or trying to explain it all away.

In case my faith crisis is also your faith crisis, here are some thoughts. People will behave in ways that hurt you. Sometimes you will have witnesses; mostly, you won’t. You will have feelings about the things that harm you, like shame and embarrassment and even rage. Some people will disagree with you about those feelings and whether you should experience them at all.

Here’s the wild, subversive, beautiful bit: You don’t have to change, suppress, or deny your feelings. You get to sit with them, express them without questioning their fairness, their reasonableness, their right to exist. Then you get to let them go, and carry on living a kind and gracious life, whatever that looks like for you.

If you want to educate those who hurt you, if you want to cut them some slack or analyze their reasoning or question your reading of the situation, there will be plenty of time for that later. But the immediate aftermath of a painful thing is not for educating or reasoning or arguing on Facebook with your cousin’s hairdresser about whether it was really as bad as you claim. No, immediate aftermaths are for your anger, and your shame, and your frustration with this silly old world.

Put out your gaslight, friend. You won’t be needing it anymore.

Beautiful Things Are Happening

I remember the first time I worried I might not ever be okay.
I was fourteenish, embroiled in a toxic not-quite-relationship with an older boy who’d discovered the exquisite pleasure of exploiting my insecurities. I had burgeoning confidence in my potential; I could picture a successful, if difficult, road ahead. But secure, relatively intelligent young girls who are quite sure they’re doing all right aren’t any fun to manipulate, so he began to poke holes in my bright future.
“You really need to be more independent,” was the regular refrain, delivered with tender cruelty I was meant to mistake for tough love.
“It’s a hard world out there, dear,” and “you’ll struggle for sure,” and “good thing I’m here to help.”
I got miffed, all the time. I even pushed back some, when courage was close at hand. On some level, I understood these criticisms were as rich as turtle cheesecake coming from a person who had accomplished less in his 18 years than I had in the four years that separated us. I had a lot to learn, in the blindness skills department most of all, but I was competing at music festivals, getting excellent grades, and managing not one but two chronic conditions without much medical support. I was about as on track as any teenager I knew.
He, on the other hand, was perpetually angry, hopelessly off track, with an uncertain future and a penchant for blaming his disabilities for abusive outbursts and bouts of frightening possessiveness. If anything, I should have been the one clucking with concern, but much as I sensed the wrongness of it all, I let his doubt poison my faith. Faith is there when the odds aren’t favourable, and to be disabled in a harsh world is to live with unfavourable odds. And faith, more than skills and talents and support, has always been the engine of my success for that very reason. I’m convinced he knew that.
In my senior year of high school, that engine had all but stalled. I’d broken all contact with that toxic friend long before, and he had since died suddenly. He could no longer mail me packages I didn’t want, or threaten suicide if I didn’t play nicer, or use social media to stalk me, or email sanctimonious lectures about my tragic inability to take care of myself. But the damage was done. He had triggered a landslide of second-guessing that, helped along by myriad forces in my life, had buried me to the point where all I could do was dread everything – dread university, dread my first job, dread new cities and exciting adventures and fresh mistakes to run with. I still had so much to learn, and I was paralyzed, rather than energized, by all of it.
Depressing, amiright?
Fortunately for us all, this is a new-year-new-decade reflection post, and those have to have a happy ending and a hopeful outlook. Them’s the rules.
The past decade has presented a lot of pain and self-doubt, brought on in many cases by the doubt of others. The pressure to make something of myself—to ‘transcend’ blindness, chronic pain, mental illness, limited educational opportunities, the whole bit—sat smugly atop the self-defeating prophecy that I’d never do or be enough. What was the point in trying?
But it has also blessed me with plenty of people who had so much faith that they couldn’t conceive of me being anything other than enough, maybe more than enough. I’d make mistakes, sure, and fall flat on my face a few times given that stubborn streak running through me. Ultimately, though, I’d pick myself up and keep charging ahead, because that’s just who I am.
“Listen,” one friend said bracingly during one of my late-night fall-apart sessions, “you are going to screw things up sometimes, in the blindness department and in the general life department. You’ll put reds in with your whites and burn hell out of your dinner and at some point you’re going to get really lost in a new place, and all of that will suck.”
“Exactly!” I wailed, missing the point spectacularly.
“It’ll suck, but you’ll wake up the next day and realize that life keeps going. And you’ll discover after a while that trying stuff is messy and scary and you can’t be good at everything you touch. I was embarrassingly far into living on my own before I felt comfortable with my life skills. I survived. You’ll survive too, and then you’ll understand that when someone says ‘you’ll never make it,’ that’s not helping you. That’s not motivation. That’s not love.”
This come-to-Jesus moment came on the heels of another friend getting so sick of my constant self-flagellation that he nearly cried with sheer frustration.
“I swore to myself I wouldn’t sit here and watch you do this to yourself anymore. Seeing you beat the shit out of yourself all the time hurts me, and it’s not my idea of a good time. Cut it out.”
(Some of my friends sure knew how to bring the constructive tough love, wowsers.)
As many of you know, I did end up going to university and getting jobs and doing fine on my own. I learned most of the skills I’d need to do well in the world as a disabled person, as a writer, as a professional, as an aunt and mentor and wife. And at one of my lowest moments, total strangers would remind me that I’m not alone in my doubt and my despair, that if you’re running low on faith you can always borrow someone else’s.
This journey hasn’t been romantic, and I’m still learning to have faith in myself and ask for help when I need it. I’m still suppressing the reflex to put myself down, just so I don’t have to deal with fear and failure head on.
But here is the wonderful, indispensable lesson of the decade: now that I’ve allowed people to believe in me, now that I’ve let their faith rekindle mine, brave and beautiful things are happening.
I’m wide open to another ten years of failures, and to many more beautiful things.

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.