Losing Touch in the Time of Coronavirus

So far, 2020 has been the year of losing so many things: The ability to gather guiltlessly, the security of jobs and livelihoods, the assurance that the healthy people you love will probably not fall prey to an unknown virus. Like everyone I know, I’ve struggled with the loss of routine, of connection, of the gift of nonchalance when I wake with a scratchy throat.

Most acutely of all, I feel the loss of touch. By this I don’t merely mean the obvious, near-universal longing for human contact. I’m not talking so much about warm, fearless hugs and handshakes that don’t involve hand sanitizer or the furtive acknowledgement that we’re not really supposed to be doing this, are we? I’m a warm-and-fuzzy, touch-oriented person, and have been known to find touch from strangers, under the right (consensual!) circumstances, to be bracing and beautiful.

But as a blind person, I have lost more than these. I have lost my ability to move through the world with the elegance and precision I once enjoyed, if you can call anything I do elegant. You don’t realize how often you touch things until you are required to wipe them down afterward. In my shared workspace, for instance, I have given up tea, coffee, and even water I don’t bring from home, because it’s just too hard to navigate a common kitchen as a blind person without putting my hands all over everything. When things stay in one place, as they do in my home kitchen, I can pretty much plop my hand down on exactly what I need, no groping required. The rest of the world doesn’t operate with the same dedication to putting things precisely where they found them.

I’m a scrupulously clean-handed person, partially because of all the touching I need to do to find things, but I still feel self-conscious as hell touching anything at all in the time of COVID-19. After many tense conversations with blind friends all over the world, I know I’m far from the only one.

I search for the wipes, which move ten times a day as people use them, only to encounter someone’s discarded mug, a basket of sugar packets, a roll of paper towels, somebody’s oatmeal bowl. These I must now sanitize.

I fumble and wave experimentally into the ether, searching for the hands-free door-opening mechanism I know is there but can’t quite find without making contact with it. Before March 2020, I’d have simply opened the door manually, because that’s far more precise when you can’t see. But now there’s a policy about these things, no touching doors please, so now I’m flailing.

I trail my hand along a row of seats on a bus to find an empty one. I press buttons just to cross the street. I touch a door handle, then my cane, then a railing, then my cane again, then a length of wall to orient myself, then my cane again, and so on, because who has time to stop and sanitize every few feet?

I ask for help figuring out the buttons on a pin pad. I instinctively default to hand-over-hand exploration when someone tries to teach me something new, because touch transcends language barriers and clumsy directions better than any medium I know. I automatically reach out to touch when someone wants to show me their new haircut or cozy sweater or nifty pair of shoes, because that’s a small but meaningful part of how I appreciate the world around me. Then I pull back and blush hard with embarrassment, feeling empty and off balance for a moment.

I ask for an elbow each time I must be guided, and for the first time in my life, this feels like an unspeakable favour to ask, a brazenly selfish and risky request.

“Hi there, may I, a stranger, put my hand on you in the year of plague and terror? Hate to ask, sorry, but my mobility skills aren’t great and this area is totally unfamiliar to me and I can’t keep up with you otherwise. Really sorry about this. Want some sanitizer for your elbow?”

Besides the impact on other people, and the self-consciousness that comes with using high-touch surfaces to orient oneself in an era where the word ‘high-touch’ gives people nightmares, I’m also dealing with the logistical puzzle of keeping myself safe without sacrificing independence. Just how often should I sanitize? How often do I need to wipe down my cane? Is there a hands-free way to do the things I’ve always done by touch, and if so, how safe is it? How can I follow social distancing guidelines when they’re shown using arrows and signage and other things I can’t perceive? If I accidentally bump someone, will they behave aggressively toward me, even if there was no way for me to prevent it? Should I walk around with Ziplocs on my hands? Really lean in to it?

Then there are additional concerns my friends with service dogs deal with, like how do they keep their dogs from getting covered in a bunch of COVID particles? How well will their dogs adapt to social distancing conventions? What if their dogs get infected, which doesn’t seem common but has been known to happen to both cats and dogs? What if someone decides to pet, feed, or otherwise mess with their guide in the middle of a pandemic? Heaven knows propriety, safety, courtesy and basic respect haven’t been adequate deterrents before now. Why would a novel coronavirus change that?

Time and experience will provide me with more answers than I have now. If nothing else, the self-conscious shame I feel each time I so much as brush a counter or chair-back with a fingertip will fade, because I can’t sustain that level of anxiety indefinitely, thank goodness. Many guide dog handlers and fellow cane users have told me they’re feeling more comfortable all the time, and I will, too. One day soon, I’ll memorize the locations of all the hands-free door-openers and no doubt be brave enough to pour myself a coffee at my workplace. Maybe I’ll even convince people to stop moving the wipes, dang it.

Until then, I’ll trot out my favourite refrain since this whole mess began, as much for myself as for you, dear reader. Stretch yourself, even as you feel fear and self-protection, to be extravagantly, abundantly, excessively kind to each other. If you’re disabled and annoyed with this new normal that seems designed, unintentionally but maddeningly, to shut you out and strip you of your confidence, assume there are ways to make things better, and help others implement them. If you’re sighted and feeling icky watching a blind/disabled person interacting with their environment in a way that seems too hands-on for comfort, be helpful and patient, because we’re all confused and none of us has this figured out just yet.

Wash your hands, wear your masks if you can, and stay healthy, friends. And most of all, be good to one another. We’re going through a major global upheaval whether or not we choose to be the best of ourselves through it. We may as well lead with grace.

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.

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.

Breaking: Voting Blind is Still a Mess

I remember the first time I voted in an election—Alberta’s last provincial election, in fact. I wasn’t sure what to expect, but I’d been advised to anticipate, well, just about anything. Some blind voters wove enchanting tales of gloriously accessible experiences: knowledgeable volunteers, helpful Braille overlays to make paper ballots accessible, and plenty of dignity for everyone. (Yay!) Other visually impaired voters described confusing polling station layouts, bewildered election officers, and ballots that were impossible to fill out independently. Since I was voting via a mobile polling station on my university’s campus, I had no way of knowing what would be waiting for me.
The experience was about as bad as it could have been, I’m sad to say. If I hadn’t happened to run into a sighted friend on my way to the polling station, I would have been totally demoralized by the disorganized space and baffled volunteers who were supposed to be managing things. I could tell they all meant well, but no one seemed sure of how to handle the situation. Indeed, one of them made a phone call, pleading for help: “What am I supposed to do with a blind person?” (She … she really couldn’t think of another way to put that?)
In the end, after much table-shuffling and whispered conversation, it was decided that my sighted friend should fill out my ballot for me. No one present, besides the friend in question, offered to assist me; I believe they figured I’d intentionally brought her along for that very purpose. There was no formal procedure, no consent form or oath of any kind, and the entire rigmarole took so long I was beginning to sense I was holding up production with my pesky access needs. The experience was so unpleasant it took a lot of courage to vote in the federal election that came soon afterward. As this post points out, Elections Canada didn’t have their act together any more than Elections Alberta had. Voting may have been my sacred right under democracy, but standing among those frazzled volunteers, I felt as though I were asking for the ocean in a cup.
Today, I voted in the 2019 Alberta provincial election, hopeful and eager to give the process another shot. Friends who’d voted in advance polls claimed their experiences had been considerably more encouraging this time around, and I thought I might get lucky. I was also excited to vote in a regular polling station rather than a mobile one, which might have better-trained elections officers. A girl can dream! However, I did bring my partner with me, just in case. That turned out to be a sound decision.
For the most part, things went well this time. The polling station had adequate signage, and seemed well-organized. There were people stationed near the entrance to help voters find their way, and everyone I interacted with seemed competent and self-assured. I got the impression that these people were working together like a well-oiled machine, which I found reassuring. In general, I can’t fault anyone working at this polling station, and I believe the inconsistencies I’m about to recount were down to incomplete training and preparation.
My partner and I approached the voting table, only to be told that the sole work-around for filling out my ballot was to request assistance, either from an officer or from my companion. The officer we dealt with was unfailingly kind, but obviously nervous. He frequently directed questions to my partner instead of me, and I had to work hard to redirect him. He seemed so uncomfortable with the whole procedure that, after listening to his halting explanation of how to complete the special declaration form, I knew I’d not be leaning on this well-meaning but flustered stranger—not when an alternative was available, anyway.
First, my partner read and signed a brief oath swearing to provide assistance to me. Then, the elections officer signed as a witness. I waited, assuming I’d also be asked to sign, seeing as I was giving official permission to let another person cast my vote for me. Surely, something of this gravity would require my explicit consent.
Nope.
Immediately after signing as a witness, the officer waved us behind the table, and my partner filled out ballots for us both. I trust him without reservation, of course, but it all felt a little too easy, too casual, for my liking. Before I knew it, my partner was handing both our ballots back to the officer to check, and I didn’t even get to place my own ballot in the slot. And the lack of a Braille ballot—a low-tech overlay that’s easy to produce and easy to use—was still bugging me as we walked away from the table.
As soon as we left the station, my partner burst out: “I can’t believe they didn’t make you sign anything! It’s your vote! That doesn’t seem right.”
Perhaps it didn’t seem right because, according to this summary of the Election Act, it wasn’t. The summary states that according to the section on voter assistance, both the person providing assistance and the disabled voter must take an oath. For whatever reason, that was either excluded from the declaration we were given, or a separate form wasn’t provided at all.
More interesting still, the act goes on to specify that a visually impaired voter can use a “voter template,” which I assume refers to a Braille and/or large-print overlay, if they don’t’ want to be assisted by anyone else. The language seems clear, but if there was any kind of template designed to help me, no one knew about it. As always, the incredible inconsistency of the process obstructed proper accessibility, even though the language in the Election Act is unambiguous.
All in all, things could definitely have been worse. I had a partially sighted person with me to curb some of the awkwardness. The officers were respectful to a fault. The station was easy to locate and even easier to navigate. I enjoyed the atmosphere and made sure everyone knew I appreciated their service.
But, considering how important it is that elections be fair and accessible to all, our provincial and federal agencies have a long way to go before every disabled person can expect a dignified, consistent voting experience.
I tolerate messy processes in every other area of my life, and I try to do so with grace because life is busy and we’re all doing our best with what we have. When it comes to voting, though, I think I can reasonably expect better.

I Don’t Want You to be Grateful

I don’t want you to be grateful that you don’t have my life. I want you to ask yourself why it’s so hard, why it’s so unfair, and what you can do about it. I want you to see the barriers—the inaccessible environments and the crushing weight of low expectations—and realize that, without these roadblocks, it wouldn’t be quite so hard and unfair. I want you to know that I wasn’t put on this earth to encourage you to appreciate what you have. I want you to understand that, in a more inclusive world, there would be little need to look at a disabled person and think, “Thank God that’s not me.” I want you to know that through the smallest acts, you can help make that happen.

I don’t want to inspire you. I want my ordinary actions to be just that: ordinary. I want to be more than a motivational meme or symbol of struggle. I want you to see me, not just the white cane, the dog, the wheelchair, the diagnosis, the brain or the body that doesn’t work exactly like yours does. I want you to admire my strong points without erasing my weak ones. I want you to stop attaching “for a disabled person” to every compliment you pay me. I want you to see my talents and charms, my flaws and my quirks—the things that make me every bit as human as you.

I don’t want you to tell me you’re my ally. I want you to show me. I want you to model that care with your actions, your values and your votes. I want you to describe your photos and call out that friend who’s always complaining about the “handicaps” on welfare. I want you to ask why that new restaurant doesn’t have an accessible entrance. I want you to recognize that a thousand social media posts can never equal an in-the-moment act of kindness. I want you to accept that how you make me feel is far more impactful than what you tweet.

I don’t want to be in your diversity poster, your diversity working group, your diversity brochure. I want to be consulted for practical solutions, not publicity stunts—because my time is worth more than that, and so is yours. I want you to seek my feedback not because the optics are favourable, but because my perspective is of value and I have something to offer you. I want two-way streets. I want to help move things forward, but I can’t do that while I’m sitting at the token table.

I don’t want to make you a better person. I want to increase your awareness and deepen your understanding. I want to point you toward opportunities for growth and education. I want you to be part of the solution. I want you to stand beside me as my equal and my ally, not because it makes you a good person but because better treatment of disabled people makes good sense for everyone.

I don’t want your charity. I want you to hire me. I want you to rent to me. I want you to let me take your class. I want you to be the patient or the client or the customer who doesn’t flinch when a disabled person walks into the room. I want you to trust that I am suitably qualified and that I will meet your standards. I want you to be comfortable with the concept of working, productive disabled people. I want you to wonder why there aren’t more of us.

I don’t want you to be my voice. I want you to acknowledge that I have my own voice. I want you to amplify it, bring it to the ears of those who wouldn’t otherwise listen. I want you to help the world understand that I am not, and have never been, voiceless. I want you to refuse when you are asked to represent me. I want you to point in my direction when someone asks, “What does she think? What does she need?” I want you to step back, because I am my own best advocate. And when the world asks you to speak for me, I want you to pass the mic, because my story is mine to tell.

Wait!

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

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

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

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

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

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

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

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

Walk and wait.

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

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

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

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

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

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

Better Living Through Severed Shoestrings

“Money doesn’t grow on trees, you know,” played on repeat throughout my time in public school. I was better off than many blind students, since my school division rarely hesitated to fund what I needed, and my educational assistant’s skill far exceeded her salary. Despite this relative abundance, I was never permitted to forget how lucky I was to receive basic educational tools. Fellow classmates were forever losing or damaging their books and equipment, while I was reprimanded for so much as bending a binder. I was threatened with a $700 fine for misplacing one volume of a Braille book. If a piece of expensive equipment malfunctioned—usually because I had not received the most rudimentary lessons on how to use it—I was held solely responsible, my attempts to explain myself summarily dismissed. Almost nothing I used belonged to me, so a broken coil or missing stack of Braille paper was grounds for outright hysteria. In fact, my first panic attack was triggered by a problem with my school-issued laptop. It had been drilled into me by a few overzealous adults that I could either be a faultless steward of my assistive technology, or I could surrender the right to have any at all. Panic seemed warranted.

University was a welcome reprieve. Generous grants and scholarships covered all my equipment. There was an expectation that I’d take care of my technology to a reasonable extent, but no one was hanging over my shoulder, evaluating the way I carried my Braille display. Grant money wasn’t unlimited, so I still had to be cautious, and when something broke down, there was no guarantee I could afford to repair it. For those fortunate enough to be uninitiated, specialized technology seems to break down a lot.

Then, as if to cement this shoestring pattern, I started working in the nonprofit sector. Anyone who has worked in nonprofit organizations for any length of time knows that you can’t assume you’ll have reliable access to stamps and functional phone systems, let alone costly assistive devices and software. Funding is available for Albertan employers, but I had already developed the habit of accomplishing all tasks with bare-bones resources. Years of living on the disability shoestring meant I was a convenient employee, but not necessarily an optimal one. In the disability world, you often get what you pay for, and the nonprofit tendency to use no or low-cost alternatives to standard products spurred me to avoid asking for anything at all unless my job depended on it. My employer checked in periodically to make sure I didn’t need anything new, but I insisted I was just fine, thanks. Again and again, I chose the long, winding path to every goal—whether at work or in my personal life–because it meant conserving other people’s money and time. What could be more important than that?

Recently, I switched to a position in which employees are expected to make any reasonable request that will increase their productivity. Nothing is promised, but much is delivered, and my shoestring habits are neither lauded nor useful. Profligacy isn’t encouraged, but neither am I praised for taking hours to perform simple tasks just because I used a cheaper option, or refused to ask for help, or failed to request an accommodation. In my new environment, resources are plentiful, and I’ve had to do major soul-searching to become comfortable with that.

It has taken me years to pinpoint why I find the hard way so easy. The trouble with the shoestring lifestyle is that while it’s not enjoyable, it’s comforting. If no one can accuse you of being a drag on the system because of those dreaded “special needs” of yours, you can indulge in self-righteous piety. Doing everything the difficult but economical way is a bulwark against societal pressure to take as little from a harsh world as you can. I convinced myself I had to earn my right to work, which meant ensuring that no employer or disabled peer could view me as financially burdensome. Amid all my anxiety about costing too much or needing too much help, I forgot that employers are typically more attached to excellence and efficiency than economy. If I proved to be valuable and competent, employers would find ways to accommodate me. On the other hand, if I cost them next to nothing but lagged in terms of productivity, they’d be well within their rights to trade me in.

A lawyer friend said it best: “A good dose of get-sh*t-done is important, but time is money.” Cultivating an independent, innovative spirit is worthwhile, but it’s equally important to identify what you need, and have the guts to ask for it. Shoestrings make great security blankets, but when resources are within reach, it’s best to snip those strings. The severing exposes you to potential criticism, yes, and it means someone might conceivably make the case that you’re too costly to keep, sure …

But it also means you’ll do your best work, in good time, with minimal risk of burnout. What could be better for your work-life balance, your health, and your employer’s bottom line?

I’ll keep my ability to improvise and adapt. I’ll hang onto my talent for working under tight budgets and tighter deadlines. I’ll learn multiple ways of circumventing disability barriers, because the ideal environment will not always be there.

As for the scarcity-based, shoestring mentality? I think it’s time I let that go.

The Settling Kind

In may, I visited my very first escape room. I expected some hiccups, but was nonetheless excited. Escape rooms sounded like the ideal amalgamation of everything I find fun: low-key activities, free of unnecessary stimuli, packed with puzzles and bolstered by a team atmosphere. I’m not naive, and I anticipated visual challenges I’d be unable to meet, but I assumed there would be enough tasks I could manage to make the experience worthwhile. Besides, I was used to settling for a little less. It’s an art form at this point.

The escape room proved less accessible than I could have imagined. We didn’t make it through the entire sequence, so I can’t guarantee there weren’t accessible brain-teasers lurking near the end, but everything we encountered was, at minimum, partially visual. Even the logic puzzles required such complexity of description—and such perfect recall on my part—that I gave up completely. While the fully-sighted participants swarmed the claustrophobic space, ransacking shelves and deciphering tiny writing on the walls, I hung back, at loose ends. Occasionally, some sympathetic soul would try to include me, but the activity was on a tight timeline, and none of us could think of a timely and effective way to let me participate at all, let alone as fully as everyone else. Ultimately, I was of no more use to anyone than the toddlers running around our legs.

I left the room disappointed, berating myself for being so. Shouldn’t I have expected this? Shouldn’t I be used to this by now? Why did I let myself hope, anyway? I ought to know better.

When you grow up rural and disabled, disconnected from opportunities and understanding peers, you’re likely to adopt the art of settling as a survival mechanism, and quickly. If you’re unable to be at peace with missing out, you’re probably in for a war of attrition.

It wasn’t all bad: My family and friends were unfailingly accommodating, and my sister was denied many an activity because my parents worried it would exclude me. Cousins and friends modified games to make them easier for me to play, and valued my participation almost without exception or complaint.

The rest of the world wasn’t so inclusive, and I came to accept, at a very young age, that I’d better get used to the sidelines. After a few years of skipping rope on the stage while my gym class played dodgeball, or solving math equations while my classmates took swimming lessons, I even grew to prefer the fringes. It seemed safer there—more suited to my introverted, self-conscious personality. Inclusion seemed like an unreasonable burden to place on anyone, and when you grow up surrounded by nondisabled people, you tend to prioritize harmony over desire.

By the time I started university and amassed a group of disabled friends, I noticed how demanding—that’s how I viewed them then—they all seemed to be. They wanted described video and tactile museum exhibits and blind-friendly versions of mainstream sports. Their determination to participate felt foreign and frightening. I’d spent years convincing myself I was happy to spectate. A deeply-embedded combination of habit and self-protection had let me hover on the sidelines without acknowledging my own desire for a life more fully lived. All this time, I had thought myself the kind of person who hangs back, sits things out, and says no to anything that seems too fun or messy or adventuresome. With the exception of my musical performances, I’d rarely permitted myself to reach beyond my limits and ask for more. On the cusp of adulthood, I was forced to accept that I had contorted myself into the settling kind to avoid rejection and exclusion. It’s easier to say “I don’t want to be included,” than to say “I wanted, and did not get.”

Growing pains set in, and some of them persist today. I still catch myself being a “no” girl. Settling for less than everyone else comes far too naturally, even now, and I continue to demand higher things for others while quieting my own dangerous longings. Loved and encouraged as I am by my family and friends, I still instinctively reassure myself that I don’t need inclusion. I don’t need to be welcomed. I don’t need to transcend my most basic needs. If I can pay my bills and hold certain types of jobs, what right have I to anything more frivolous?

Growing pains are not eternal, and look how much growing I’ve done! I’m now more focused on inclusion than access. I’m more inclined to ask for a pleasant experience, rather than contenting myself with a bearable one. If my reaction to the escape room is any indication, I’m becoming downright spoiled, expecting to enjoy social gatherings and play an active role in activities I’ve paid for. I’ve practically become a princess!

I’ve come a long way, but I won’t diminish what it took to get me here. Dismantling my tendency to settle has been a painful and unpredictable process, with many discouraging moments when I’ve judged myself or others for wanting what nondisabled people are given by default. Occupying my place at the table has been, and remains, an ongoing work-in-progress.

Are you a settler? Have you learned to think of inclusion in terms of what you deserve, while believing it’s a right for everyone else? Is fun something you force yourself to earn? Do you pretend you like the margins because the centre might reject you?

Don’t settle to survive. Do not place yourself in a supporting role because main characters have bodies and brains that pass as “normal.” Break the pattern of treating less like it’s more. Be grateful, and be patient, but be a little demanding, too. Realize that a more vibrant life is possible, and allow yourself to want it, because no one else can make it happen for you.

Most nondisabled people don’t tie themselves in knots, wondering whether they deserve to enjoy their lives. So, my fellow disabled people, why should we?