adversity

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.

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Courage, Heroism, and Other Delusions

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Blindness is scary for anyone who hasn’t experienced it. Blindness is, for some people at least, the ultimate worst-case scenario. People have told me, to my face, that they’d rather be anything else—deaf, paralyzed, depressed—than blind. I always marvel at this shortsightedness (pun intended) but I understand it, too. If I went totally deaf tomorrow, I’d feel frightened and desperate. The thought makes me shiver, though I’d never presume that deaf people’s lives are abysses of misery. Even if I did, I’d never say it to their faces, because it’s one of the most insensitive ideas I can imagine.

Perhaps the worst thing to hear, though, is “I could never manage a life without sight…how do you do it?”

How indeed. As we all know by now, most blind people live successful, productive lives. Those who don’t usually have other factors to contend with; blindness, by itself, does not guarantee a hopeless existence. Certainly, it can be a struggle. I’m not going to gloss that over. I’ve spent the past year blogging about all the ways it can be difficult. I confess I’ve sometimes indulged in a little self-pity. Eventually, though, I just go back to my life, because what else am I going to do? I can’t wallow forever.

So, how do I do it? How do I live with this disability (or indeed my less visible ones)? I am going to tell you my secret. I am going to reveal to you the cornerstone of my continuous courage in the face of adversity. I can even tell it to you in four words. Ready? Here goes.
“I have no choice.”

Yup, that’s all there is, folks. I was born this way, and I’m going to stay this way indefinitely. I deal with blindness because it’s my constant companion. I surmount blindness-related obstacles because I have no alternative. I keep my head up because the only other option is to put it down and never lift it again. To not “deal with this” is to not exist at all, and that’s definitely not a viable solution. I mean, what would you do if you went blind tomorrow? What would you do if you had no other choice but to be the way you are? What would you do, kill yourself?

Actually, yes. Some people have admitted that they would at least consider it: “God, if I were blind, I’d be suicidal. I could never have your life. It’d be too hard. I’m not brave enough, or heroic enough, or strong enough. I’d give up completely.”

First, ouch! You think my life—or a life like mine—is so full of despair that I’d be better off dead? Second, how can you say this with any conviction until you’ve experienced it? Third … you think I’m brave? Heroic? Strong?

I hate to disappoint you, but I’m none of those things, at least in relation to my disabilities. There’s nothing like necessity to spur you on. There’s nothing like adversity to force flexibility. When enough pressure is exerted, you either bend or you break. I’ve managed to bend, that’s all. There’s nothing mystical or herculean about that.

I’m not brave because I cross the street without looking at the traffic. I’m not heroic because I advocate for my right to equitable treatment. I’m not strong because I haven’t folded yet. The human spirit is surprisingly supple—it can adapt to just about any situation. People carry far heavier burdens with more grace than I carry mine. Just because I seem brave, or strong, or heroic doesn’t mean I am. It just means I’m getting on with things.

So many people shoulder things that seem impossible to bear. They don’t do so because they want to display their courage. They do it because it happens to be what life has thrown at them, and now they’re making it work as best they can. And, if you had to do the same, I can just about promise that you’d make it work, too. There is no point telling someone how brave you think they are, and further telling them that you could never handle it. They’re not handling it out of a desire to draw attention to their mettle. They’re handling it because it’s the only way.

I’m not here to be an inspiration for others, and I’m not here to prove to myself that I’m a brave soul. I’m here because humanity went forth and multiplied, and I’ve been dealt an imperfect hand, just like everyone else. If that makes me heroic, then we’re all heroes—each and every one.

Go Ahead, Laugh!

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People can become very twitchy about humour in relation to disability. Laughing at any aspect of it can seem a transgression of the gravest sort. How could anyone with a conscience make fun of the poor little blind girl, right? Barbaric!

Contrary to this belief, I find humour inexpressibly helpful; indeed, sometimes I’m not sure how I’d survive without it. There are many situations in my life that seem to demand tears. When I can’t (or won’t) cry, I can always laugh. Laughing can defend me from the scorn of others; it can shelter me from the humiliation of what has just happened; it can strengthen me in the face of whatever it is I’ve messed up this time; and it can encourage others to laugh the hard stuff off, as well.

Take a simple blunder like this one: during a camping trip many years ago, I was visiting with my sister, a friend of hers (a stranger to me), and a cousin. All evening, my cousin had occupied the same chair. I usually pay attention to where people choose to sit, as it makes it easier to interact with them with a modicum of social grace. Believe me, I need all the grace I can find. Unfortunately, this system isn’t infallible, as I was soon to discover. Assuming that my cousin was still seated where she’d been all night, I went up to her from behind and hugged her, crooning “I loooove you!” for good measure. Without missing a beat, my sister’s friend replied “Aww! I love you too, Meagan!”. I wasn’t about to cry…so I laughed. This wonderful person had the grace to laugh with me.

Social slips like that one are sometimes enough to make a rather shy girl like me recoil in horror, retreating into a ball of humiliation until everyone else has long forgotten the incident. I have, however, learned to use humour as a tool to handle embarrassment with confidence—something that is essential when trying to put others at ease. If you’re planning to pursue a career in communications and public relations, as I am, networking is an unavoidable component of the field. I learned early that if I pretended I was comfortable with my “blindness mistakes”, others would become comfortable with them as well. Getting them to giggle with me over them is even better, so I aim for a laugh almost every time. Of course, if the slip is tiny, it’s sometimes better just to let it rest; chances are whomever I was with didn’t even notice it anyway. No need to draw more attention to myself than I already do. And you know what they say about faking it till you make it…that really works. Since using humour as an instrument of social bonding, I’ve become much more at ease in my own skin, even in the most terrifying of public situations.

I’d like to address something far more important, though, and perhaps far less well-known to people in general. From a very early age, I have acknowledged the benefits of a little gallows humour when things go horribly, horribly wrong. While blindness doesn’t often put me into devastating situations akin to, say, terminal illness, it certainly tests my patience and fortitude at times. I’ve talked about getting hopelessly lost, being denied essential opportunities, and struggling with a minor identity crisis. All these things would have been so much harder to bear had I been unable to laugh at them. Even some of the small stuff—submitting essays with messy fonts, groping strangers on the bus, and tripping that poor guy on crutches (more on that later) seem a little worse than they actually are while they’re happening.

Reactions range from admiration to outright horror when I make light of serious issues surrounding my disability. It’s as though people think I’m degrading myself by laughing at it, even though it’s my issue to laugh at if I please. “Don’t talk about yourself that way!” they exclaim, leaping onto soap boxes that have appeared from thin air. I always respond the same way: “I need to laugh. If I don’t, I’ll cry, and nobody wants to see that.”. While there’s nothing wrong with venting frustration or sorrow in whatever way suits, I generally prefer a good belly laugh to a storm of tears. Besides, I’m far less attractive with a red nose and puffy eyes and, as we all know, unattractiveness is a tragedy!

It is true that the suffering experienced by those with disabilities is no laughing matter in general. It is not to be taken lightly and should be treated with some solemnity and respect. With this in mind, it is perfectly acceptable for both the sufferers and those closest to them to find a little humour in a bad situation, especially if the alternative is to wallow in despair. I realize that this might seem like clichéd advice, but it’s advice that few people actually seem to take. Maybe it feels like crossing an invisible line, over which you might be considered callous or unfeeling. But they don’t keep doling out this advice for nothing. It really works; this pronouncement comes from a veritable flood of experience. I’ve been in just about every hopeless situation a blind person can find themselves in, and humour has helped me out of nearly all of them.

We’ve all heard the wry, brave humour of the desperately ill, bereaved, and endangered. Their ability to laugh at themselves and their various predicaments isn’t just something to be admired; it is something to be imitated. Even if you don’t feel in the least strong, laughing at your problems will make them seem more manageable, even if nothing has changed. Laughter, after all, means that you’ve gained some distance and perspective on the issue, and are able to find whatever silver lining there might be in it. It’s not just about putting on a brave face and displaying the appropriate heroics. It’s also about lightening your burdens as much as you can, and allowing others to lighten theirs as well. You can be sure that if you’re suffering, someone else is suffering with you. Do them a favour: make them laugh.