Month: July 2015

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.

Baby, I Wanna Hold Your Elbow

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I was rushing through a mall (everything happens in malls), because I’d lost a friend and her guide dog. They’d left me behind in a cloud of dust, and I was trying to figure out where they’d gone. A stranger wanted to help, which was very kind of him. Unfortunately, his altruism took the form of grabbing the tip of my cane off the floor, raising it so that the cane was fully horizontal, and pulling on it as though to lead me by my own cane.

What else could I do? I trotted along behind him, asking him more and more frantically to put the cane down, please! He either failed to hear me, or ignored me, because he kept going until we reached my friend, at which point he let me go and went on his merry way. This, I thought wryly, should have been a teachable moment.

I’m a little shy, believe it or not, and I’m also a little too tolerant. Sometimes, people grab me and I just sort of plod along, wanting to object but not finding a polite way in which to do it. Most blind people are much more vocal than I am, and they have every right to be. After all, their safety is of utmost importance to them.

There are many ways to lead a blind person, and most of them are problematic. I won’t go so far as to say there’s a “right” way, but there is a way that is considered standard, and for good reason. The “standard way” is called sighted guide method, and it usually involves the blind person placing their hand on the sighted guide’s elbow. The grip should be light but firm, just in case something separates the two. The blind person should walk behind and a little to the side of the guide, so that things like steps, curbs, and doors will be easily detectable. In a perfect world, everyone would know this and use it, but of course this is anything but a perfect world. I won’t waste too much time going on about details; there are many sources that can teach you the ins and outs of sighted guide. I will, however, explain why it’s important and what can happen if other methods are used instead.

Alternative method: leading by the hand
Why it’s a bad idea: First of all, this is sort of weird. If I’m not familiar with you, I don’t want to be holding your hand no matter what’s happening. Cab drivers who approach out of nowhere and grab my hand frighten me just a little, I won’t lie. The main problem with this, at least for me, is that it traps my hand so that it’s harder to get free if I need to. If I’m resting my hand on your elbow, I can let go at any time. If something terrible happens to you, I can quickly escape before I meet a similar fate, after all. This goes for holding me by the wrist as well.
Possible consequence: I have been taught to twist my wrist as soon as someone touches it, so don’t be surprised if, when you grab for my wrist, I break your grip, hard, without even thinking about it.

Alternative method: leading by the shoulder
Why it’s a bad idea: People love to go behind me and push my shoulders, especially when navigating a narrow space. It makes me feel a bit uncomfortable—I don’t like to have people so close behind me, I’m paranoid—and it restricts my freedom of movement. Also…it looks kinda silly, yes?
Possible consequence: At best, I’ll admonish you and try to wriggle out of your grip. At worst, I’ll bump into something directly in front of me, because I had no way to protect my path. (This can be mitigated by carrying a cane during sighted guide—something not everyone does.) It’s much easier to move your arm behind you so I know it’s a narrow space.

Alternative method: guiding while insisting that I ditch my cane
Why this is a bad idea: My cane is my mobility tool. I have grown very used to having it around, and I quite like the confidence it gives me. I have had some awful sighted guides over the years, and I still don’t trust anyone to guide me without my cane. You could be the best guide in the world, and I’d still want my cane in my hand. I do my best to keep it out of the guide’s path, and it gives me that extra bit of tactile feedback I find so helpful.
Possible consequence: You could have an attention lapse, even for thirty seconds, and bash me into a pillar, stroller, car mirror, pedestrian, or doorframe, among other things. (Yes, people have run me into all of those and more.) Even if your guidework is perfect, I’ll still glare at you. Lots of people say, “…but I guide blind people all the time and they never use their canes. Trust me!” No. Unless it’s in your way, or otherwise inconvenient, I’m using it, and that’s pretty much that.

Alternative method: linking arms
Why it’s a bad idea: Okay…so…I’ve done this one. I cheat a lot, because I have friends who like to walk arm in arm and it’s all very companionable. Still, it’s technically a bad idea because it forces us to walk side by side, which means I have less warning for steps and curbs. It also traps my arm, which is always dangerous.
Possible consequence: If my arm is in yours and something happens to you—say, you slip on a patch of ice—I’ll be dragged along with you unless I can get my arm out of your grip in time. When being guided by a stranger, especially, I am very careful to keep full control of my arm and hand.

The best method? Ask. Some blind people prefer different variants of the same basic guiding style, so if you’re not sure, ask them to show you how they’d prefer to be guided. If you’re dealing with a blind child and you know their preference is patently unsafe, then you have the right to insist on a different way. Otherwise, please respect the individual needs and preferences of the blind person you’re guiding. They will almost always know best.

“I’m Not Prejudiced! Some of My Best Friends are Blind!”

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“I’m not racist! Some of my best friends are black!”
“I’m not bigoted! Some of my best friends are LGBT!”

This century-old defence is generally dismissed, especially on the internet. People try to claim that, due to the presence of minorities in their circle of friends, they are above reproach. They can’t possibly be prejudiced. Would a racist have black friends? Would a bigot have gay friends? The general consensus is yes! a thousand times yes! Your best friends don’t shield you from your biases, even if they are willing to ignore or even embrace them.

Several months ago, someone I respect very much (let’s call her Alison) made a stereotypical blind joke: “Shouldn’t ads for blind people be on the radio instead of TV?” or something to that effect. I took no issue with the joke’s complete lack of comedic value; your mileage may vary, perhaps? What I did take issue with was the inherent (and silly) stereotyping in the joke. A lot of people think we don’t enjoy TV or movies simply because we can’t see. Apparently, the dialogue is some trivial, peripheral aspect of the whole experience. As helpful as described video can be, it is still very possible for us to enjoy TV shows (and cringe at the ads). Her joke played on that ridiculous stereotype, and she made it very publicly, reaching a large number of people all over the internet.

I, in my infinite foolishness, wrote to her:
“You do realize that blind people can still watch TV, yeah?”
“Um, hello? Of course. Ever heard of a joke?”
“Well, yes…it’s just that this one plays on some very pervasive stereotypes that we spend much of our time fighting against. Please please try not to perpetuate it.”

After this exchange, some friend of hers chimed in: “Wow, chill, bitch! Some of Alison’s best friends are blind!”

Ah, here we go…the ultimate trap: if my blind friend says it’s okay, then it is. No question. This is immutable, right?

Noooooo! Not even close. Not for one second.

I found this whole conversation distinctly odd. Alison is a well-known and very vocal feminist who supports the rights of minorities. She despises stereotypical jokes about women, LGBT people, and ethnic minorities. She devotes much of her time to dispelling the myths and encouraging truth and inclusiveness. All wonderful stuff, and I like her a great deal.

Why, then, does all this stop applying when dealing with blind people? Suddenly, all the ethics and inclusiveness and open-mindedness disappear. Suddenly, for no discernible reason, it is acceptable to make ridiculous, condescending jokes about us that, if made about a gay or black or transgender person, would be reviled for the bigotry that they are.

Jokes among your friends are different from jokes made in public. I play along with blind jokes made at my personal expense with enthusiasm. Blind people, in fact, are very good at laughing at ourselves. I’ve always written my blog with my sense of humour at the forefront, so it’s not the jokes I have a problem with, not really. Alison’s joke is pretty harmless, at least on the surface.

What I have a problem with is the defence itself. It’s such an empty, futile argument. It appears to lay a steel trap, but is really just so much shrinking from all responsibility. Maybe you have a blind friend who thinks stereotypical jokes are hilarious, and that’s okay. Feel free to make them whenever you’d like … around and about them, that is. Just because your blind friend is okay with something, does not mean that the rest of us are okay with it. Furthermore, it doesn’t mean that it’s okay, period.

There will be a lot of people who assume, judging by this post, that I’m an exceptionally uptight person. I’m not. I am almost too tolerant at times—something my friends never tire of telling me. My issue isn’t with the individuals, like Alison, who tell these jokes and/or excuse behaviour that would be bigotry if directed at any other group. My issue is with the people who allow that argument to stand unchallenged. I could have six hundred gay friends, and they could all actively encourage me to tell prejudicial jokes or otherwise behave in a bigoted manner towards them. That doesn’t change the facts, though: most people, LGBT or otherwise, would find that behaviour generally offensive.

Maybe your blind friend is okay with bad TV jokes. Maybe she thinks it’s funny when you pet her service dog while its in harness. Maybe he erupts into side-splitting mirth when you steal his cane and hide it. (God, I hope I never meet your friend.) None of that matters in the grand scheme. If you tried any of that in the wider world, people would denounce it, and rightly so.

If your best friends are allowing you to go out there and act like a bigot without at least warning you … get some new friends.

“May I Pray For You?”

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“Excuse me …”
“Yes?”
“What’s your name?”
“Meagan…any reason you ask?”
“Yes. Meagan, would it be okay if I prayed for you?”
“Why…”
“Well, I’d like to ask Jesus if He might help you with your eyes.”
“Ah.”

This one. It happens to most of us at one time or another. I admit that I’ve heard about it plenty of times, but didn’t experience it myself until I was eighteen or so. I hear all kinds of derisive comments about the situation, even from religious blind people. They hate pity as much as I do, and they consider the prayers insulting, or at least misguided.

I tend to react differently, and I must say that my approach is very unpopular. No, I’m not wild about the idea of people asking God to fix me. I wager that He would cure me (or not) with or without entreaties from strangers. I fight the good fight where negative stereotypes are concerned—you all know this, dearest readers—and I discourage pity as often as possible. And yet …

There is something so earnest and genuine about these offers of prayer. The requests might be misguided, yes. The desire to see us cured is misplaced, certainly. In many cases, we’re at peace with our lives as they are, and a cure is potentially frightening to many of us. So no, I don’t actively encourage anyone, stranger or otherwise, to pray for or even wish for a cure.

On the very few occasions when someone goes out of their way to ask if they can pray for me, I do my best to respond with grace. I respect and appreciate their openhearted compassion, even if I wish there wasn’t a need for it in the first place. I know in my heart that they have the purest intentions, at least most of the time. And, while I generally take issue with the “good intentions” card, there are, in my mind at least, exceptions. Will my life change in any way if a stranger goes home and prays for me? I suspect not. Will it hurt me, though? I don’t see how. Will I gain anything by berating them for even asking? No. Will I further my own cause by being harsh with them? Definitely not.

I’m at a point now where I decline these offers of prayer as graciously as I can. I spend too much time battling the idea that we’re just waiting for someone—anyone—to “make the blind to see” as it is. Still … I have to celebrate the goodwill of these people. Society is apathetic and individualistic to such a degree that these small kindnesses, however I might feel about them, remain special to me.

If you must pray, then pray for me, by all means. I ask, though, that you pray for my well-being. Pray that my various issues remain manageable. Pray that I continue to cross paths with fortune.

Don’t pray for the blind girl. Pray for the girl.

“Mommy, What’s Wrong With Her?”

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So there I am, walking along, just trying to finish my shopping and exit the crowded mall as soon as humanly possible. Suddenly, my animated discussion with a friend about soft vs. hard-bristled toothbrushes (my life is unbearably exciting) is interrupted by an inquisitive little voice: “Mommy, what’s wrong with her?” In my experience, parents and other caretakers have one of three reactions: fear and avoidance, uncertainty and discomfort, or tranquility and patience. I don’t think I need to tell you which one I prefer.

Avoidance And Fear

I encounter this often. Children tend to ask difficult questions, and adults are not all-knowing, even if they’d like to be. Children tend to assume that grownups have the answers to all their burning questions, and at a certain age, especially, they delight in asking “why.” The trouble is that a solid understanding of disability in general and blindness in specific is rarer than I’d like. Rather than trying to grapple with things they don’t understand (or worse, misunderstand), adults remove the source of the curiosity, hoping that “out of sight, out of mind” will apply. Probably it does. Of course, this solves nothing: the child remains uninformed, and the parent does as well. Nothing is gained, and plenty is lost, too. Mothers, especially, react more out of fear than avoidance, and that fear can be passed along to the child. The last thing I want is for anyone to be afraid of or disgusted by me. I dislike being a walking curiosity, but frightening people is far worse. I’m the furthest thing from frightening. Please don’t hide your children from me; I have no plans to eat them. No, I don’t bite. No, blindness is not contagious. No, my parents did not commit grievous sins, and no, I’m not the resultant punishment. And … no, I do not use the stick to hit people (feel free to substitute “set my dog on people I don’t like” here).

Uncertainty And Discomfort

Some parents don’t run the second they see me, but they’re still very uncomfortable with both my presence and the need to answer their children. If I’m lucky, they haltingly explain that my eyes don’t work; if I’m unlucky, they resort to furtive mutterings about God having made a mistake or something. As far as I know, most religions assume that God is perfect, so that one makes little sense even to most religious people. Inquiring minds won’t buy that explanation for long; I know mine didn’t. I sympathize with the inability to put esoteric concepts into words, but blindness is not an esoteric concept (Cue debate about whether the word “esoteric” is itself esoteric.) I carry a white cane, so unless the grownup in question genuinely doesn’t know what white canes symbolize (in which case they’re to be forgiven), it’s not difficult to describe me to a child: she’s blind. Her eyes are broken. Her eyes don’t work. Use whichever phrasing tickles your fancy, but it all amounts to the same thing. It is very possible—and necessary—to explain disability to a child. Children need to know that not all people are like them. It is so important that they learn about disability, especially in a positive or at least neutral sense. Parents often transfer their fear and/or intolerance of difference to their children, and that needs to be counteracted in whichever way suits. Most people don’t have a particular aversion to blindness, so it’s totally okay to tell a child about it. It’s not taboo, shameful, or scary, and it shouldn’t be uncomfortable. My hope is that it will become normal, easy, and comfortable for all involved. People need to be less afraid of disability. We’d all be better off for it. Personally, I see no reason to go into detail about low-vision versus totally blind etc. All of that will come with time; for now, it’s most important that the child has a rudimentary idea of what blindness is.

Tranquility And Patience

Sometimes, and only a very few times, adults respond in a calm, constructive way. Those who know something about blindness will offer patient explanations, employing frankness and respect. Others—and I love them for it—address me directly: “Excuse me, but do you mind talking to my child? She’s very curious and I want her to hear the right answer, not the one I’d come up with on my own.” I’m always so pleased with this latter response. It includes me in the conversation, rather than treating me as though I’m the object of your child’s curiosity; the mall isn’t the zoo and I’m not a giraffe. That response also takes courage: the grownup in question has to address me directly, and ask whether I’m willing to educate a stranger’s child. If a grownup is courteous and brave enough to ask this of me, I always oblige—and I do so with pleasure. Some blind people hate to educate. They resent the fact that they are treated like poster children for blindness and disability. They just want to go about their days without being bothered. I, however, will take being asked to educate a child over being treated like an object of fear, disgust, or condescension. When people address me politely, ask respectful questions, and allow me to enlighten them on whatever they’re curious about, I’m happy to educate all day long! If you do nothing else, please discourage your children from shrinking from me in fear. I’m human, too.