Month: April 2020

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.

Who We Are When Life is Good

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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.

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.