Singing up the Mountain

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.

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

Along with being asked why I’m so angry and negative, I’m also advised, by able and disabled people 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 content that reminds them it’s not all bad and 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 (and unbearably boring) disabled person is a battle, and they 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 mistreatment.

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 it wrong. 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 really do work very hard and yield impressive results. I admire and respect their strength, even though I know 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 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 narrative of disability I discussed earlier—the one demanding we remain appealingly brave and heroic at all times. We already know that living our lives does not necessarily require heroism, and we also know that 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 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 others of us will live quietly and contentedly, just as the majority of nondisabled people do. 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.

Courage, Heroism, and Other Delusions

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.