Guest Post by Elise Johnston: Smart People, Silly Questions, and Knowing What We Cannot See

Most blind people who have spent any time dealing with medical professionals have learned to expect some very bizarre questions. Experienced practitioners can sometimes seem disconcertingly ill-informed as soon as disability is involved. Trained as we are to place vision at the centre of the human experience, it’s not all that surprising that even the experts think blind people can’t, say, live a normal life, or experience romantic attraction, or independently express their own identity.

Elise Johnston, a prodigiously talented trans writer who has been blind from an early age, has graciously agreed to share her own experience with the “smart people, silly questions” phenomenon. I hope her story will make you laugh and, more importantly, get you thinking about how and why medical professionals–the ones authorized to make life-changing decisions for us–assume that people without sight are people without understanding.


“So,” the psychiatrist asks you, in a delicate, hushed voice, “as a blind person, how can you be transgender?”

Pause. Breathe. Collect thoughts. Ignore impulse to scream like tea kettle.

You know how you’re sitting on this couch, petting the psychiatrist’s snuffling Boston terrier and telling your heart, “No, it’s not a good idea to jump out of mouth. That won’t bode well for getting the letter of recommendation for gender affirmation surgery. That’s the reason for being here, remember?” You know about this, right?

And you know weird questions might be coming because this dude just gives off that vibe. Also, you’re blind, and blindness makes smart people say stupid things.

But compared to able-bodied cisgender dudes with the power to make or break the lives of desperate patients, what the hell do you really know, right? Right?

“Wait,” says Meagan, reading the first draft of this blog post, “I doubt all of my readers know this gender jargon.”

Fine. I’ll explain.

[Trigger warning: special rainbow snowflake words and concepts follow. Hang on to your pearls.]

Gender

First of all, take the equipment out of the picture. That’s biological sex, not gender.

Okay, so find some new parents and watch how they treat their baby. Blue balloons or pink? Barbies or trucks? Ballet or soccer practice? “She’ll break hearts” or “he’ll go places?” That’s gender. Sure, there are beautiful exceptions to the binary, but that’s the general pattern, the pattern of gender as we know it.

Lest there be lingering confusion, gender is not about who you’re attracted to (or not attracted to), and has no specific relationship to sexual orientation. So forget about sex. That’s what I’ve done most of my life. Which leads us nicely to…

Dysphoria

Imagine you step in a rain puddle and soak your socks. And you’re not allowed to change your socks for the rest of your life. And every time you go somewhere, you step in a new puddle and soak your socks again.

Now imagine that your sock is your body and the puddle is your family, friends, teachers, employers, neighbours, everybody. They’re always drenching you in cold wetness. They can do this by calling you a name that doesn’t fit or using a pronoun that doesn’t fit.

If you don’t have an imagination—let’s face it, so many of us don’t—ask everyone in your life to use the opposite pronouns when talking about you and call you a name that’s not traditionally associated with your gender. Feels weird, right?

This weirdness is called misgendering, and the feeling of constant intense discomfort is called dysphoria.

Transgender vs. Cisgender

Everybody is assigned a gender based on whether they have a penis or a vagina when they’re born. “Let’s just forget about the huge number of people who have neither or a mixture of both,” says the doctor.

If what the doctor says agrees with you on the fundamental existential level, then hurray! You’re cisgender. You can go about your life discovering other interesting challenges to occupy you until death, like deciding how best to troll Meagan’s blog.

If the doctor’s assignment feels entirely, devastatingly mismatched, if you live with permanent feelings of depression and wet-sock misery, then you might be transgender, and wish to pursue transitioning.

Transitioning

This is when a transgender person explores a gender other than the one they were arbitrarily assigned. They might try on their siblings’ clothes, prompting disgust and anger and plenty of parental panic. If they have facial hair, they might burn it off with lasers or electricity. They might pursue gender affirmation surgery to help with dysphoric feelings, and get to deal with gatekeepers like our fine psychiatrist friend.

They may also take estrogen or testosterone. These can cause breast development or lower the pitch of the voice, among other marvelous things. Think puberty.

Back to My Story…

I presented the psychiatrist and his dog with my favourite transformation metaphor, with much solemn throat-clearing:

“When I was a young caterpillar, I despaired of my fuzziness, especially when said fuzziness appeared on my face. I longed to grow breasts—I mean wings—and take to the sky as the butterfly I felt like on my rainbow insides. Life was a tipsy wheelbarrow, full of loneliness and despair, tossed about on a stormy sea, sailing downhill toward Suicide Lake.”

It’s the same story I’ve told my parents, my friends, my therapist, that other psychiatrist, the GP who prescribes my hormones.

Except, then came the curveball, the weird question to end all weird questions. Here it is again, just for effect:

“So, as a blind person, how can you be transgender?” he asked. “Like if you can’t see women, how can you possibly know that you want to be one?”

Oh dear, I thought, I have just boarded the elevator of wrongness, and this elevator music is a symphony of shit. Let’s break it down:

This PhD thinks blind people can’t grasp gender like a sighted person can.

This credentialed, respected, supposedly woke expert thinks one must see woman to know woman.

Anyway, because I have access to someone else’s blog, and words are free, here’s what I told the psychiatrist. Maybe you might identify with some of it, especially if, like me, you don’t tend to base your idea of gender on how people look, invalidating the lives of blind people everywhere.

Firstly, in my world at least, gender isn’t biological. It’s not a matter of body, it’s a matter of brain. Or maybe it’s my gut? Or my heart? My bones?

I’ve been convinced for as long as I can remember that I am a woman, making one of the assumed premises of the psychiatrist’s question invalid: I don’t want to be a woman; I am a woman. What I want is an exterior that matches my interior, and I don’t need sight to be sure of that.

Secondly, my experience of gender is one of relationships, how people treat and mistreat me. Whether I’m included or excluded in activities and spaces – am I invited to the stag or stagette? It’s about my assumed preferences on beverages (wine or beer?), books (YA romances or SF alien porn?), movies (action or chick flicks). It’s about whether I’m expected to feel one way or the other about comedy, music, personal hygiene, hobbies. It’s about the instrument I’m assigned in band class (baritone, because flutes are girly), the birthday presents I receive, the clothes I’m expected to wear. It’s not all about the clothes, though god, it really is all about the clothes.

I do, of course, have dysphoria about my body. Else I wouldn’t be sitting on this couch talking to this psychiatrist, hoping he can unlock the doors of his mind and accept the idea that people without sight are not people without experience.

I am indeed fortunate that my dysphoria isn’t triggered by seeing other women, but it is triggered by lots of other things, like hearing about periods, hugging them and feeling a chest that isn’t flat as a pancake, bumping into hips that aren’t cursed by narrowness, and knowing that those lucky bitches do not have to contend with the cursed crotch bulge.

So yes, on some level, my dysphoria is triggered by intellectual knowledge and not by visual reminders, but unlike certain cisgender dudes with doctorates, I actually use all of my senses around people, and even, on occasion, my brain. In fact, for me, one of the most dysphoric things in my life is my voice.

The Point of it All

The point, thanks for asking, is that whether we’re blind or sighted, our senses of self are bound up in our gender. I’m not sure about everyone else, but I don’t need functional eyeballs to tell me when there’s something out of whack with my sense of self.

But I’m just an anxious, blind transgender lady with two post-secondary degrees and a shit ton of lived experience.

What do I know?

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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.

Backhanded Compliments and the Tyranny of “Nice”

Many children learn early on that their smallest accomplishments are cause for cheers, applause and glowing social media posts. When you’re very young, your every milestone and every “first” are worthy of celebration, and with good reason. There’s nothing wrong with praising a child for walking well or pouring drinks with accuracy. For most people, this trend eases and finally stops, and they start earning praise for more impressive stuff like finishing a degree or landing a great new job. It would be pretty weird to keep cooing and cheering over an adult who can navigate their own home without guidance and pour coffee independently, yes? You’d be mortified if someone seemed surprised that you, a fully-grown adult, were capable of essential daily living tasks, right?

Right?

Sadly, an awful lot of  very well-intentioned people appear to have missed that memo—the one that says admiring someone’s basic skills stops being cute when they’re all grown up, and that disability is no exception to this rule. It is no less embarrassing to hear “Wow! You handled those steps so well!” or “You got your own coffee!” when disability is involved. While some of us do work harder than the average person on cultivating everyday skills—some of us very hard, in fact—drawing attention to our prowess can feelmore patronizing than validating. I don’t speak for everyone, which is the caveat I always mention at this point in a post, but I can say with confidence I do speak for a very large number of us.

Look, I get it: you want to say something nice, make someone smile, acknowledge what you consider to be exceptional talent or strength or perseverance. Maybe you feel inspired by the person you’re complimenting, or perhaps you can’t think of a better way to break the ice. It could be that you’re genuinely curious about how they get things done given the barriers they face, or you’re anticipating they’ll need help later and you want to develop rapport in advance. You’re a nice person, just trying to do a good deed for someone else. I truly do understand.

Keep this in mind, though: a great many times, being kind is preferable to being nice. Emotions tend to run very high in these types of situations, because no one likes discovering their attempt to make someone happy might be backfiring. Nevertheless, I do believe most people want to treat disabled people kindly, and kind people don’t make others feel condescended to or humiliated, even with the best of intentions. Kind people consider context, and compliment accordingly. And kind people don’t let “I was just being nice” outweigh any harm they might cause.

You may be shaking your head, feeling down on yourself because you know you’ve messed up this way. I beg you not to take this personally, however. In my experience, just about everybody makes this mistake at least once. It’s not isolated, and it’s not rare. Even if you actually have a disability, you have probably done this to someone without being aware of it. Proximity to disabled people should never be mistaken for immunity, and I’d be hard pressed to think of someone who hasn’t fallen into this trap. I’ve certainly spent some time there myself, and I ought to have known better.

So, here’s a simple test to help you. Next time you plan to praise a disabled person for a specific skill, ask yourself whether you would feel awkward if that compliment were directed at you. Would it make you uncomfortable if someone patted you on the back for, say, picking out your own outfit? Might it be a little off-putting if someone congratulated you for knowing where the staff kitchen was, six months after you started working in the building?

If you determine that the compliment you want to offer would make you feel pretty good about yourself, go ahead, as long as it’s contextually appropriate. Feel free to tell me if you like my writing skills. Tell my designer friends they have excellent creative instincts. I have no doubt my partially sighted partner would love to hear that you enjoy his cooking. These are all respectful compliments, and there’s no backhanded “You do well … for a disabled person”subtext attached. Further, you avoid giving the impression that people whose disabilities mean they do need help with basic tasks are somehow inferior to people who are able to do those tasks independently. After all, an adult who needs assistance with grooming, for example, is no less worthy for needing that help.

On the other hand, if the compliment you’re considering would feel insulting or at least bizarre if directed at you, that is your cue to pause. Think about whether you might be causing more discomfort than goodwill, and be mindful of who is around. Being complimented on my travel skills when I’m crossing the street is one thing. It’s distracting and unnecessary, but I’ll survive. In a professional setting, however, it’s likely to make other people notice me not for my solid work ethic or valuable skills, but for a disability that does not and should not fully define me.

Don’t be shy about telling people what you admire about them. Nothing in this post is suggesting you have to conduct a full-scale cost-benefit analysis every time you make a positive comment around a disabled person. I’ve received quite a few thoughtful compliments in my life, and while I’m not as graceful about taking them as I’d like, they’re always welcome. I do ask that, in future, you run through that simple test in your mind, and practice being more deliberate about how you dish out praise. Many, many of us will thank you, if only inside our heads.

Oh, and if you simply want to know how something gets done, or how a particular barrier is managed? Google your question, or ask. If we’re not crossing an intersection or trying to do our shopping, most of us are quite happy to answer.

Let’s Hear it for the Small Wins

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

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

One down, many thousands to go. How uplifting!

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

Why not?

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

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

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

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

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

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

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

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

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

That’s not nothing.

That is, in fact, everything.

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

We, the Persons

It happens more often than you’d think. I’m scrolling through a piece of writing relating to policy or human rights, and I see it: “persons with disabilities.” It’s not something I find in much mainstream writing, but in the non-profit and government worlds, it’s ubiquitous. Though I’ve come to expect it, it always stands out to me in the most distracting way. It conjures other phrases, like “persons unknown” or “persons of interest.” It’s clinical and cold. It feels archaic and, especially outside the context of law, dehumanizing.

It seems like everyone else gets to hang out at what passes for the cool table, under the “people” umbrella. (Boy, that bar is high.) We don’t typically talk about persons of colour, or LGBTQ+ persons, or persons with low incomes. Governments don’t commit to supporting “working persons.” Politicians don’t address the “persons of this great country.” Democracy is not “by the persons, for the persons.” That would sound odd, if not incorrect. At best, it would be out of place, and give people pause.

I’m not usually a splitter of hairs when it comes to small linguistic details, unless I’m wearing my editor’s hat. I tend to think that while language has immense power, the sky isn’t likely to fall if someone refers to me as, say, “visually disabled” versus “visually impaired.” I may have a preference, but it’s a personal one, unlikely to inspire whole blog posts. You say tomato, I say “Who cares?”

There is something about “persons with disabilities” that continues to annoy, no matter how many times I come across it. Unearthing the phrase buried in legislation is one thing, but when I see it in a recent piece of writing, I can’t help but shake my head. Why haven’t we joined everyone else? Why have we yet to gain full “people” status? Why are we still being referenced, in a surprising number of documents, using a term that is jarring and isolating for no good reason? Are we destined always to remain in a medicalized category of our own, somewhere just to the south of “people?”

It really is a very minor detail, I know. Most people will look at “persons with disabilities” and not even notice the strangeness of it. Others will notice, and not care. I’m sure many people with disabilities (see what I did there?) will read this and shrug. There are bigger fish to fry, certainly–more important quibbles to discuss, definitely.

But my favourite thing about minor details is that they are so simple to fix. The complex issues are hard to solve, and I’m in no position to do much about any of them. What I can do is make sure “persons with disabilities” never creeps into my own writing. I can encourage my clients and coworkers to start thinking of us, and representing us, as a group of people much like every other. I can point out how bizarre it is to cling to such an outdated term, and hope that it will one day become a rare one.

If you’d like to see “persons” with disabilities become a relic of a society that really did view disabled people as less-than, instead of a phrase we cling to with bewildering obstinacy, you might consider joining me in this modest quest. I’d be more than happy to hear about your progress, pushback and all.

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.

Enough With the Sick Day Humblebrags

All my life, I’ve been surrounded—some might say afflicted—by troupers. You know the type: they can work through anything, raging fevers and hacking coughs be damned. Industriousness in the face of illness is a point of pride, and rest is for other, presumably weaker, people. Their insistence on being out and about when they’re contagious does cause some cringing from those around them, but discreet disapproval is nothing to a long-time trouper.

The trouper’s crowning achievement? They haven’t taken a sick day in ten, twenty, thirty years. Perhaps they did, once, but it was life or death, so that’s forgivable—just barely.

I’ve sat self-consciously among these trouper types, growing progressively guiltier as they list the ailments that didn’t stand between them and their work. Shifting restlessly, I’ve listened to them condemn people who choose to take sick days, trading anecdotes about rampant abusers of the system. I’ve begged the universe to disperse my atoms as they called for bonuses that would reward employees for refusing to use their allotted sick leave. No one stopped to consider what that might mean for people like me, even as I sat in their midst. Most irksome of all, no one stopped to admit that not needing sick days said less about their work ethic and more about the privilege of a healthy body—something many of them took for granted.

The idea that we shouldn’t come to work sick is gaining ground, though it’s cold comfort for people who don’t have the privilege of paid sick leave. Employees are encouraged not to expose their colleagues to contagious illnesses, and sick day guilt is finally being acknowledged as a mainstream issue. Doctors are calling for an end to sick notes, citing the valuable time wasted, the germs needlessly spread to vulnerable patients, and the hefty bills employees and students with common colds are left to pay. (A few months ago, my poor partner paid $40 for a sick note.) As a student whose migraines were not well-managed, I dragged myself to walk-in clinics and hospitals when I should have been at home, resting and suffering in peace. I, too, have paid pretty pennies for slips of paper that declared what I already knew: I had a migraine, and I needed bedrest. Hoops must be jumped through, and HR departments must be appeased, but that doesn’t make the system sensible.

Sick day guilt persists. Employees who should be resting will sometimes work remotely. They take calls when they should be sleeping, or answer emails from a doctor’s waiting room. People lucky enough to have access to paid sick time still have concerns about job security, workloads, and cover-offs. Despite cultural acceptance of self-care and work-life balance, feeling terrible about staying home is practically a cliché. Even when employers actively encourage time off, many employees–and I include myself among them–feel more comfortable toughing it out.

Aside from the usual bugs that strike everyone each winter, I deal with chronic pain in my neck, shoulders, and back. The pain typically manifests as nagging headaches, stiffness, and muscle aches. Occasionally, nausea, watering eyes, and disorientation will join in, making it difficult to focus. When the pain peaks, which isn’t often, thank goodness, I struggle to find words, concentrate, and even orient myself physically. Spurred by sick day guilt, I have insisted on working during those severe pain days, even when it meant bouncing off doorways or making silly errors. Anyone with sense could see I ought to be resting, not working, but growing up around all those proud troupers had left a powerful impression.

I hit my lowest point while working a summer job. A combination of emotional stressors and a new medication made my migraines spike, and I woke one morning with a leaden feeling of wrongness throughout my entire body. I got on the bus, limbs tingling, and realized I was getting yet another migraine. I crossed a busy intersection to access my office building, but was so dizzy I couldn’t identify which way was forward. When I tried to climb the steps into the reception area, my feet failed to make the appropriate motions, and I fell. Twice.

When I got to my office, I immediately began working, hoping I’d be able to make it through the day. By the time a colleague found me an hour later, I was draped over my desk, green and shaking. While a kind stranger drove me home, a bucket cradled in my lap, I understood that if I didn’t change, I’d be unable to work at all. An emergency hospital visit a few days later confirmed it: the guilt was unsustainable, and so was the trouper mentality.

Nowadays, I manage my pain much more consciously. I have several coping mechanisms I can use while at work, and I know how to ask coworkers for help and support. I take care of myself at home so I can function well at my job, and take the odd sick day without too much dithering about whether I deserve the time. This approach has meant I suffer less pain in the first place, and manage it more successfully when it does come along. My current work environment is a balanced one, and when I go several weeks without a severe pain episode, I feel lucky, not proud. I am not special for not needing sick days as often as some other coworkers do, and I know it.

Abandon the sick day humblebrags, and recognize that illness is not a moral failing. Avoid bringing that nasty flu into the workplace unless you’re positive your coworkers can’t get along without you. Stay home when you can, and strive for real, lasting recovery. If people take sick days around you, reserve judgment. Don’t treat your lack of need for sick leave like a badge of honour. If you have the option of taking paid sick time, coming to work when you’re unwell means you are either very stubborn or very dedicated. It doesn’t necessarily place you above your colleagues.

We’ll all have days when we feel as though taking a day of rest is not an option. We have too much to do. People are depending on us to be present, and we’re confident we can handle the discomfort. I’ve been there, and I’ll be there again. I’m not going to miss a file audit meeting or workshop because my pain is a bit worse than usual. It’s okay to be a trouper, at least some of the time.

But, as we overcome physical limitations to be present, let’s do so with the awareness that staying home is a valid choice, too. Let’s acknowledge there will always be those who abuse the system, without demanding that everyone lose out because of a few bad apples. Let’s stop expecting people to be impressed by a sparkling attendance record. Let’s shift our focus to performance and productivity.

Oh, and let’s take a crack at conquering that sick day guilt. Health is not a sign of strength, and illness is not a sign of weakness.