inspiration

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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Disruption, Script-Flipping, and the Art of Carrying on

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While riding the elevator this morning, a stranger paid me the kind of compliment that normally sets off alarm bells.

“You seem so independent,” he chirped, pushing the elevator button for me as he did so. (The irony, my God the irony.)

“Well, I’m used to being blind, so it’s no big.”

“But you seem like someone who doesn’t blame the world for your problems, you know?”

“I mean … I just sort of get on and do, right? That’s all you can do.”

“Exactly! See, not everyone gets on and does. You’re choosing to do it. I’m telling you, you’re a ray of sunshine.”

I did my usual smile and nod thing, internally preparing myself for the usual inspiration porn doom spiral. The script, well-rehearsed by now, goes something like this:

I’m not inspiring. There’s nothing praiseworthy about living my little life. People think I’m impressive but I’m not. I am reduced to their daily hit of inspiration. They’ll never really see me. I’ll never get past this. Bring me my saddest violin. Life’s but a walking shadow. Et cetera et cetera.

This time, for reasons I don’t yet understand, a different script presented itself: What if he was right?

Not precisely in the way he intended, of course. In the immortal words of so many of my visually impaired friends, ‘blindness is whatever.’ (We’re an eloquent bunch.) But could I, just this once, flip the script? Could I worry less about feeling guilty because I don’t educate every single person I meet? Could I be praiseworthy for “getting on and doing” for reasons other than my most prominent disability?

A mere hour before this interaction, I was talking myself out of bed. My tension pain was flaring up. My recently-healed back injury had left a grumpy ghost behind, always most irritating in the mornings. My depression was pressing down more heavily than usual, insisting that my very happy life was actually not happy at all. I was dealing with a longstanding accessibility issue at work, and I didn’t want to confront it today.

And I ignored all those reasons to stay down. Not such a grandiose achievement, nothing cinematic, but still: I carried on and did what needed done, independently, because that’s what I do.

Maybe my resolve, my tired but determined air, was visible to this kind stranger, even if he attributed it to the wrong struggles.

So, was I allowed to interpret his compliment in a way that made more sense to me? Is flipping the script, disrupting those nasty doom spirals, a legitimate way to deal with those moments where education just doesn’t fit? Do I ask myself way too many questions?

I’m gonna say yes. For the sake of my sanity, my energy, and my need to take a break sometimes: Yes!

Here’s to the noble art of letting the little things go.

Here’s to living as the person you are, not the one you think you ought to be.

Here’s to life being so much more than an endless parade of teachable moments, not all of which you can possibly be expected to seize.

Here’s to chilling out and, every now and then, taking that problematic compliment—because guess what?

You’re tired. I’m tired. You’re doing cool things despite the obstacles, and so am I.

So, by all means flip the script when you can. It’s good for the soul.

I Don’t Want You to be Grateful

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

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

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

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

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

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

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

Singing up the Mountain

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There’s a piece of wisdom I’ve often heard, though I’ve never traced its origin:

In life, we’re all just hiking up the mountain. You can complain about how your feet are sore, or you can sing all the way up. Your choice.

I’m no champion of relentless positivity. I maintain that, for people whose brains are wired like mine, mantras and affirmations bring on more depression than inspiration. I don’t wear rose-coloured glasses well, and even my most indulgent friends remind me to watch my pessimistic streak.

Yet, the idea of life as a long, mandatory hike appeals to me. Some will have an easier time than others. Some will find the path to be wide and accommodating, designed for their every need and wish. Others, especially those who represent at least one minority, will find the hike more arduous. Perhaps the path is narrow and winding. Perhaps your equipment is in rough shape, and you don’t have the means to upgrade. Perhaps your way is obstructed by treacherous pebbles that will send you tumbling if you’re not careful. Perhaps it’s littered with concerned strangers telling you to turn back, choose a less ambitious path, or adjust your pace to a speed they consider more appropriate.

Whatever your mountain looks like, whichever obstacles you might encounter, only you can decide how best to climb it. You can take advantage of the wide, welcoming paths, never sparing a thought for those on more dangerous journeys. You might decide to stray from your comfortable stroll to shift a boulder or clear a trail for someone else. If, like me, your hike is rocky and unpredictable, you may want to contribute to a large-scale effort to make the hike safer and more equitable for everyone who is stuck on this mountain with you. (This mountain is yours. There is no right way–only your way.)

There is another choice to make, and as I experience one of the most trying periods of my life, I’m thinking more often than usual about this mountain of mine. There have been times—and I’m sure there will be more—when climbing felt natural and simple. Boulders were moved from my path by forces much stronger than me. Fellow hikers let me lean on their broad shoulders. The map was clear. I knew where I was going and how I’d get there.

At this moment, my landscape is much more uncertain, and I am tired. My feet are sore. My canteen is nearly empty, and my fellow hikers carry burdens even heavier than my own. I can’t hear myself think for the struggles around me, and my desire to broaden the path for others is tinged with despair at my own sad smallness.

But as I write this, as I contemplate a path that has never seemed less welcoming, I know that it’s time I started singing again.

My song might falter while I cling to jagged places. Tears and frustration might dampen its beauty. Sometimes, I’ll be making up the lyrics, or humming nonsensically, because damn it if I haven’t forgotten all the words.

But I don’t know of any other way to keep climbing.

So I’m gonna sing my way up this mountain. It won’t be pretty, but it will sustain me. It will have to do, because turning back? Giving up? Slowing my step to suit someone else’s comfort? These aren’t options—not for me.

Yes, we can still complain that our feet are sore, that we are tired, that we can’t read our maps. These admissions are valid and necessary. We will need to pause, rest, drink some water, lean on the nearest shoulder.

But whenever we can, wherever we can, let’s not forget to sing.

If A Blind Person Could Do It…

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“If a blind person could do it, what’s your excuse?”
Here we go again.
Here is yet another nondisabled person using blindness, that infamous limiter, to boost motivation levels while simultaneously shaming any sighted person who has accomplished less than any given blind person.
My strong distaste for this specific motivational quote has long baffled me. I see ridiculous inspiration porn plastered all over the internet every day, and I don’t even have to look for it. Why, then, does the “what’s your excuse” line crawl so persistently under my skin? What is it about the “if a blind person could do it” reasoning that makes me feel both belittled and misrepresented? Why do I care what strangers use to get them out of bed in the morning?
Unpacking inspiration porn, as many in the disability community call it, is never enjoyable and often controversial. However well-reasoned your conclusions, someone is always going to chime in with a plea to stop all the negativity. Why begrudge someone the right to feel inspired and uplifted by you? It doesn’t cost you a thing.
Or does it?
Let’s begin with “if a blind person could do it” rhetoric, shall we? My interpretation of this statement is that anything a blind person does must be relatively easy, because we are so much more limited and incapable by default. For example, if a blind person can learn to ski, or play the piano, or cook a five-course meal, anyone can. According to the typical inspirational framework, the “if a blind person could do it” narrative depends upon disabled people being less-than: less capable, less talented, less accomplished. It also depends on us being more-than in one way: determined. Supposedly, our innate resilience is such that, despite our nearly-insurmountable challenges, we manage to get out of bed, go to the gym, hold down jobs, and raise families. Were it not for our remarkable courage and superhuman desire to succeed, we’d be sitting inconspicuously in a lonely corner weaving baskets and smiling vacantly at the wall.
It gets worse: This specious line assumes that any skills and talents developed and honed by disabled people are immaterial. If a blind person could do it, it’s possible for everyone, right? I spent four years in university learning how to communicate professionally and edit meticulously, but if I can do these things well, anyone can. If my blind friend spends years practicing her jewelry design craft, making use of existing talent and working hard to improve, none of those efforts matter because if she can design beautiful jewelry, anyone can. After my high school valedictorian speech, a sighted stranger turned to their companion and whispered “If she can learn to speak like that and accomplish so much…what’s my excuse? Why haven’t I achieved those things?” Hollow admiration when you deconstruct it, since the reason I had already accomplished as much as I had by high school graduation was a combination of gifts I was born with and hard work I’d put in to get where I was. The glaring flaw in this backhanded compliment leaves a very bitter taste behind. (Side note: I wasn’t a particularly outstanding student, but as we all know by now, expectations are lower when you’re me.)
Let us move along to the “so what’s your excuse” portion. The logic of this idea states that sighted people should use us as a way to stem the tide of excuses that frees them from everyday tasks like cleaning, cooking, and working out. If a blind person gets up every morning and gets these done, that must mean sighted people have no excuse at all, despite any challenges they might be facing. Maybe the nondisabled person struggling to motivate themselves has had less sleep than the blind person they’re using for emotional fuel. Perhaps that blind person is an early riser by nature. Could they be healthier? Could it be that they enjoy cooking and cleaning and exercise? Myriad explanations come to mind, and they all lead me to the same destination: tasks don’t diminish in meaning just because a blind person can do them and a sighted person can’t.
I’m reminded of some of my more brilliant blind friends—the ones who laughed at the words “can’t” and “never” and achieved things any sighted person would be immensely proud to accomplish. One of my friends has more or less mastered physiotherapy, cat breeding, and cooking. She has starred in a documentary, travelled Europe on her own, and is currently teaching herself to sew. At thirty, she has achieved more than most sighted seniors I know, and I don’t think anyone can honestly say that all of the skills she’s acquired are less impressive simply because she happens to be blind.
Other blind friends are published authors, admired public speakers, skilled carers, talented designers, and exemplary instructors. They attain great things because they have the necessary passion, desire, and talent, not because great things aren’t really as difficult as they seem. I would never allow anyone to cheapen the hard work and exceptional talents of my disabled friends on the basis that anything a disabled person does mustn’t be all that hard.
What is your excuse, nondisabled person? I certainly hope it’s something reasonable like being too tired, or too busy, or too preoccupied with living your life.
I hope you motivate yourself by being authentically and respectfully inspired by those around you, for the right reasons. I hope you motivate yourself with passion, desire, hard work, and discipline. I hope you chase your dreams because you desperately want to, and not because some blind person did it first and inadvertently shamed you into it. I hope you recognize the accomplishments of disabled people as important and impressive because they are, and not because disabled people don’t normally succeed. Most of all, I hope you admire disabled people not for getting out of bed, or cooking a basic meal, or doing what all grown-ups are expected to do. I hope you admire us for our unique, personal, hard-won achievements, and nothing less.

Chicken Soup For The Nondisabled Soul (And Why You Won’t Find It Here)

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Along with being asked why I’m so angry and negative, I’m also advised, by disabled and nondisabled alike, to be more positive. Sure, I’m allowed to write about exploitation and discrimination, but why am I not serving up more feel-good, inspirational content? Where’s the comfort food? Where’s the acknowledgement that the world is, at its core, full of decent people who just don’t understand me? Where?!

I know what so many people want: they want chicken soup. They want brief, digestible, guilt-assuaging content that reminds them that life is essentially good, no matter what. People certainly enjoy rage-fuel, and my passionate posts receive far more attention than my sweet little gratitude pieces, but there is still, it seems, a demand for what we in the disabled community lovingly call “inspiration porn.” You know the stuff—content that portrays disabled people in a light most pleasing to the nondisabled eye.

In these pieces, we are courageous, steely individuals with more guts and gumption than anyone else would ever need (and the drive to use them). These pieces highlight inspiring people who have achieved ambitious heights, shattering expectations with an appealingly musical crash. They are high-powered athletes, successful entrepreneurs, survivors of devastating illness and injury, or astonishingly talented superstars. They have “overcome.” They have “transcended.” They have “made it.” Life as an everyday (boring, tragic) disabled person is a battle, and these unicorns have “won.”

The rest of us? Well, nobody really wants to hear about us unless we’ve been thrown out of a restaurant for having a service dog, or been paid less than minimum wage by Goodwill. The stories the public seems most attached to are the ones where a disabled person is either beating the odds in the face of adversity, or standing proud and unflappable after shameful treatment.

These reassuring bowls of chicken soup are not just favourites of those with no disabilities. They’re also beloved by many in the disabled community, who are convinced that the only right way to be disabled is to reach newsworthy goals. There’s only one acceptable narrative, and if we don’t fit neatly into it, we’re doing life wrong. We’re “surrendering.”

The only way to get the world to care about how we are mistreated is to uplift them. Make them admire us, and after that, maybe they’ll come around to respecting us as well. You know, eventually.

I like a good story as much as the next person. I’m proud of my disabled peers, who work hard and weather fierce storms along the way. I admire and respect their strength, knowing they wouldn’t have to be so strong in a different, more accessible world. I laugh and cry with them, exulting when they succeed and commiserating when they fail. I celebrate with them when they win big, and hold space for their anger when society fails to recognize who they are outside the default disability narrative of struggle. I share empowering stories when they do particularly well, so that others will know they are more capable than many might imagine. Inspiration is not, in itself, toxic, and positivity in moderation is indeed excellent nourishment for anyone’s soul, disabled or otherwise. The blog has been, I hope,  a vehicle for empathy and understanding as often as advocacy and education.

We need to be vigilant, though, because it’s so tempting to conform to the expectation that demands we remain brave and heroic at all times. Living our lives does not necessarily require heroism, and we deal with disability because there’s no alternative, not because we’re superhumanly strong. The public doesn’t know that all the way down, though, not yet. If we don’t pay attention to how we are portrayed by popular media (and judged by each other), we will inadvertently place strain on ordinary disabled people simply trying to live their lives.

Not every disabled person is brave at all times. Not every disabled person will soar to new, hitherto unexpected places. Many of us will stumble, and fail, and give up, at least temporarily. Many of us will live quietly and contentedly, just like the majority of nondisabled people. We need to remember that it’s okay to stumble. It’s okay to falter. It’s okay to break away from the inspirational mantras circling in your head long enough to remember that you are not obligated to feature in the Huffington Post. Your life is meaningful because it is yours, and is not made less meaningful if you never break a glass ceiling or awe the masses. Plenty of people go through their whole lives without doing anything of note (I expect that will be my own lot, and I’m okay with that) and they’re still perfectly happy. You deserve an accessible, welcoming environment whether you’re “making a difference” or going quietly about your business. Our deeds do not render us eligible or ineligible for decent treatment. Having a disability or illness does not have to shape your personality or desires. Being brave and strong should not determine whether you deserve the struggles you’re up against.

Reach for the stars, if that is what you believe you should do. Don’t succumb to the doubts and misgivings of others. I’m the last person to limit you. While you’re aspiring, just keep in mind that you don’t have to function as living chicken soup. If you want to be ordinary, if you feel too exhausted to be strong at all times, or if you fail spectacularly, know that it’s an acceptable circumstance and, while you can always get back on the horse, you don’t need to be inspiring while you do it.

If you need to cry, to rage, to crumple, please do. Gather your support system close and let them carry you for a moment. You’re allowed.
In short, you do you.

Looking for chicken soup? Sorry, I’m fresh out.