coronavirus

My Best, Most Exhausting Self

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I wandered out of my bedroom last week, dressed casually for a walk to Starbucks, only to have my husband point out that I’d colour-coordinated my socks and my hair elastic. Both were pink, not that I’d noticed, and the observation was sitting funny with me. When was the last time I’d intentionally colour-coordinated anything? How long had it been since I’d bothered to choose an outfit, rather than slipping into what was most functional? I couldn’t remember, but it had been several months at least, maybe longer.

After my workplace sent me home in March of last year, I made a noble but short-lived commitment to dress professionally, groom to business-casual standards, and pretend I was going into the office every day. I soon lapsed into sweats and tank tops like almost everyone else, assuming things would be back to normal in a few weeks and treating myself to a little well-deserved sloppiness after a lifetime of self-consciousness. What would be the harm?

A year later finds me as casual as I was then, largely unaware of what I’m wearing and which coloured elastics are holding my artless ponytails together. I’ve allowed my hair to grow to my hips and beyond. My jewelry collection is literally gathering dust. My work wardrobe is wrinkled after a year of sitting unworn on hangers that have been pushed to the back of my closet. I think my fancier boots and heels are in a box somewhere; I’ve moved and have not yet unpacked the relics of what feels like a former life – a life in which I left the house regularly and cared what people thought of me.

This new carelessness would have been unthinkable before COVID-19 shuffled my priorities. As a blind woman, I have been conditioned from the cradle to obsess about how I appear to others, by well-intentioned people who wanted the very best for me. Atop the default pressures of feminine presentation—look young, pretty, unblemished, controlled—every trusted sighted person in my life reminded me to remain vigilant about my looks, and to defer to other people’s aesthetic preferences.

My clothes were selected for me, and I was not encouraged to develop my own tastes or sense of style. How could a blind person be qualified to develop such things? I straightened my hair for years because it was fashionable, even though it ate an hour of my life every single day and I didn’t enjoy the dry, staticky outcome. I submitted to makeup before musical performances and special events, but it irritated my skin and I didn’t feel I needed it. I worried constantly about things I couldn’t visually verify for myself, consumed by the fear that if I didn’t embody a narrow put-togetherness, people would never see past my disability.

From a shockingly early age, I was warned that a sighted world would expect me to be disheveled and clueless. I must not play into those stereotypes, for my own good and the good of blind peers. To seem as sighted as possible was to be respectable. Didn’t I want to be respectable?

As an adult, I gained more autonomy. I started choosing my own clothes and paying a friend to design jewelry according to my personal tastes. No anxious presence was hanging over my shoulder, insisting I look unhealthy without makeup. I haven’t straightened my hair in years, and hairdressers are always exclaiming over how healthy it is. (Refusing to scorch, dye, or saturate it with product will do that.) I followed dress codes where appropriate, and I genuinely enjoyed formal dress, but overall I embraced the intoxicating adult privilege of deciding for myself what I would and wouldn’t do to look a certain way to others. I got to decide that unless makeup and fashion and messing with my hair brought me joy, unless they were part of my authentic self-expression, I wouldn’t force myself to do them. Sure, I wore dramatic makeup on my wedding day, and I loved an excuse to pretty up, but I was no longer spending hours getting ready just to go get the mail.

Before the pandemic, I’d have told you I was being my best self. But my husband’s throwaway comment about my spontaneous colour coordination made me realize that my best, pre-pandemic self, while slightly more emancipated, was still a little exhausting. A lot exhausting, if I’m honest.

She worked very hard to be acceptable to the world, she worried about the opinions of people who had no power over her—who may not even have noticed her, in fact—and she expended her already-scarce energy coordinating her hair elastics with her necklaces with her shoes and so on.

She shied away from bright colours because what if, God forbid, she picked two things that clash a little? She dreaded the wealth of makeup tutorials for blind people, fearing the new baseline standards for blind womanhood would soon include excellent makeup skills, on top of all the other stuff she hadn’t yet mastered. She placed her body mass index above her health and fitness, because being visibly disabled was only bearable if the rest of her was without flaw, and because internalized fatphobia was a demon she hadn’t conquered yet.

So she was more autonomous, yes, and bold in her choice to rarely wear makeup and let her eyebrows go a little rogue. But was she free?

Oh no, dear friends, I see it now. She exchanged one type of restrictive lifestyle for another, told herself she was in charge, and called it good enough. It took a very different type of restriction to nudge her to the back, letting me step forward and realize that my ideal self never existed. Chasing her was only going to make me tired.

Staying inside a lot and living in sweats has not been my idea of a good time, and I do look forward to wearing dresses and skirts and blazers again. However, I’ve been confronted with the reality that the things that most need my attention are not, and have never been, my outer packaging. I should be more focused than ever on becoming a better cook, traveller, artist, friend and community member. Resilience and confidence will take me so much further than obsessive colour coordination anxiety. No one liked or admired me for my fashion sense, though I don’t do too badly on that front when I try. They liked me as a writer, musician, and loving human being, traits that will survive anything, even a pandemic.

In moments when the world feels like it’s ending, you want the confident, resilient people by your side. You aren’t going to care whether their hair accessories match their socks. You’re going to care about their ability to keep you safe and move things forward. More than a year into this, I feel like I’ve shed so much, and discovered even more. I can keep myself and others safe. I can move things forward. Everything else is just fear and marketing.

Who I am, in this difficult moment, is the only self with whom I ought to be concerned. She’s the only one who actually exists, and I like her for her increased interest in a more just world where a pandemic wouldn’t mean preventable death on a grand scale.

The thing is, when she’s not obsessive and fearful, when she’s working hard on things that bring real value, I quite like this new self. I like her renewed relationship with art for art’s own sake. I like her ability to do well at her job, no matter what she’s wearing while she does it. I like her practical acknowledgement that while we all fit ourselves into boxes to maintain a functioning society, she gets to choose whether to lose sleep over how well she is fitting inside hers. I like that, for the first time in decades, she is neither exhausted nor exhausting. While crises often bring out the worst in people, she has stumbled, quite by accident, upon her best.

Eventually, I will go back to my former life, the one where what I wear and look like does matter, regardless of what I might wish. I will start paying more attention to my appearance again. I will begin slotting myself back into mandatory boxes, just as before. It’s inevitable. Some form of confinement, in my line of work and way of life, is inevitable.

But obsessing, fretting, self-diminishing are optional. They always were, and I don’t think they will be useful for whatever is coming next. Faithful as they’ve been, familiar as they are, I think I’m ready to get to know myself without them.

Losing Touch in the Time of Coronavirus

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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.

Social Distance and Silver Linings

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

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

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

Like, without me asking.

Or insisting.

Or pleading.

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

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

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

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

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

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

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

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

Now they get it. Sorta.

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

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

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

Eat, Pray, Panic: Dubious Advice for Uncertain Times

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

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

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

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

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

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

Desperate Times Call for Desperate Feelings

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

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

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

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

Life is not Cancelled

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

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

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

Crises are Special Occasions

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

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

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

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

Be Nicer Than Necessary

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

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

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

Settle in for the Long Haul

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

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

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