The Man Who Taught Me To Fish

Being disabled means having your competence questioned at every turn. It means accepting that your intelligence, your autonomy, your very worth are always up for debate by those least qualified to make judgments. It means, therefore, that you must be strong, whether or not it comes naturally. Finding this strength, this essential self-reliance, can come about in many ways. For me, one of the fortunate ones, the tools for independence were introduced early and often.

* * *

We kneel together on the thin carpet of my bedroom. My favourite cassette tape, a collection of fairytales, is in my small, tentative hand. Speaking softly, my father explains how to slide the tape into the player—gently, now—and places my fingers on “play.” As the opening music rings out and understanding of my new skill breaks over me, I can only smile widely enough to split my face, thinking dreamily of how delicious growing up can taste. It’s a small step, playing my own audio books, but the joy lingers.

* * *

Each time I learn something new–even something as mundane as, say, the location of straws at the Starbucks near my apartment—I experience a moment of undiluted triumph. Often hesitant and rarely overconfident, I am not the archetype of success some would wish me to be. Instead, I skirt the gaps in my knowledge and abilities with an unthinking ease bolstered by years of practice. While my blind peers pursue adventure and hone new skills for the sake of doing so, I hold my shameful passivity close to my chest, owning what is necessary and burying everything else. Showing weakness, I have learned, is a grievous sin; admitting I’m comfortable with where I am is worse. Even so, when I break this ancient habit and push my boundaries, I feel a thrill that once coloured each day of my childhood, when there was someone there to rejoice along with me. Of course he would still do so, if I called him on the phone and said “Hey, Dad, I learned a new route today.” Surely, my cheerleader is still waiting in the wings, should I ever need him.

* * *

We are traipsing through an amusement park in the sweltering summer heat. I am sulky and bored in that particular way of children. I’ve had my fill of rides and novelty food; I am ready for familiar surroundings and a good book. As I prepare yet another whiny entreaty—let’s return to the car, get a cool drink, pull out the Harry Potter novel I wish I was reading—Dad pulls me aside to examine a life-sized, intricate statue of a cow. It occurs to him that I’ve never touched a real cow before, despite having driven past them a hundred times. As he runs my hands over the statue, describing each part with astounding patience and enthusiasm, I realize I’m feeling just a little less blind.

* * *

The process of spontaneous discovery was a common feature of my childhood years. Seized by inspiration and vicarious wonderment, Dad would pause and encourage me to notice a truck, an earthworm, a bird’s nest. New kittens were placed delicately in my eager hands, and I was free—encouraged, even—to hammer in a few nails and help paint a wall. If it captured my interest, it was mine to touch and try and learn. Assumptions about safety and propriety and ability were seldom made. Mine was a world of discovery, because Dad had no doubts, no reservations, no unreasonable fears.

And so, I had no fears, no doubts, no reservations of my own.

* * *

“I’m just bad at math, okay? I’m stupid, I guess.”

Salty tears stain the Perkins brailler I’m using to hammer out surface area calculations. Slightly flummoxed by all the tears, Dad makes a joke about me rusting the metal brailler if I don’t stop crying. He coaxes a grudging laugh from me, but the levity doesn’t make the work any easier. I have sat before this useless tactile diagram of a cube for literal hours, convinced that I must be less intelligent than fellow students, all of whom had exclaimed that this unit was incredibly simple. I, a star student then, had trouble accepting this reality in which I was in need of help with my homework.

I look up to find Dad placing a wooden cube in my hands.

“I went to the shop and made you some shapes. I think your problem is that you’re not understanding the book’s diagram. I think this will make way more sense for you. You’re not dumb; I know you can understand this. See?”

Sure enough, as he points out each facet of the cube, telling me how they correspond to the ones on the page, something clicks into place. Suddenly, I’m finding surface area as easy as everyone else had, all because someone was able to teach in a way I could grasp.

I am not stupid after all, or terrible at math; I am just blind—blind, and very bad at deciphering diagrams, apparently.

* * *

Blindness has taught me to work more diligently than others. In my slow, steady climb, there is little room for surrender or self-doubt. On this journey, there is no room at all for giving up. When everyone else seems poised to give me an out, to say, “Well, Meagan, you tried your best; you can go home now…” I am compelled to reply in the same way each time: “Never.” The stubbornness and refusal to concede, (the very qualities that justly infuriated my father while I was growing up), are the sources on which I draw for support through each new hurdle.

When voices say, with stolen authority, “Meagan, you’re blind. You will never—“ another voice pipes up, strident even in its secret uncertainty: “Watch me.” Much as Dad must have cursed my inflexibility, I think he has grown to respect its power. He should, for I believe he is the one who gave it to me.

Dad taught me to fish, of course. I’ve been fishing since I was so small that my rod had to be tied to my life jacket. He taught me to cast and jig and reel in even the most unwilling ones. (He also taught me to respect the fish, never causing undue suffering or taking more than my share.)

But, as you may have guessed, he taught me to fish in other, less obvious ways. His unwavering faith in my personal abilities meant I was rarely allowed to think of myself as excessively disabled. I was not permitted to wallow in self-pity or allow anyone else to feel pity, either. Through patience and determination, my father convinced me that I am strong and capable—not constantly, but often enough to succeed. To this day, my dad is the person I think of first when I prove to myself, once again, that blindness doesn’t have to ruin my life or my career or my dreams. Whenever he describes something new or lights a much-needed fire under me, I remember and honour the joy of learning to fish—because at the end of the long, hard day, all I have is me. I have my father, among many others, to thank for making sure I’m a damn good person on which to lean.
So, thank the people who taught you how to fish, and those who remind you that you still know how. You owe them a lot.

Thank You For The Freedom: Or, Why You Shouldn’t Put Blind Kids In A Bubble

My parents did me a great service: they refused to put me in a bubble. I was rarely told, “I don’t want you doing it, it’s too dangerous.” As a child, I was fearless. I’d try anything, as long as my dad was there to provide assurance of safety. I took risks with very little anxiety. I was so accustomed to freedom that I could not imagine what being sheltered would feel like. I was fortunate indeed. Many blind people are placed in bubbles by overprotective parents, never permitted to engage in even low-risk behaviour. This is detrimental to any child’s development, even for a disabled one.

I was blessed with family and friends who included me in just about every game, even when it meant they’d have to slow down a little. I thought nothing of playing tag, (I hit a post or two at top speed, but I was more inclined to laugh than cry), ran recklessly through bushes to play hide and seek, and dove gleefully off haystacks. I played cops and robbers, sometimes skidding across a sidewalk and sustaining mild injuries. I tumbled from out-buildings that lacked steps, and fell off swings. I even tried my hand at a few sports, and received more than one blow to the head during dodgeball. I had a great time through it all.

I believe this liberty to try and fail, to flirt with just a little danger, shaped my character. It made me into a stronger, more confident person. I am less sheltered and less afraid of the world in general. I had the opportunity to experiment and I remain grateful to this day. I got to have unbridled fun, just like every other child and, while I was sometimes excluded, I enjoyed equal status far more often than I didn’t.

I understand that parents are more safety-conscious than ever before. Safety regulations abound, and if you leave your child in a car for more than about thirty seconds, you might receive a visit from police, courtesy of some concerned citizen. While I’m thankful that kids are safer than they’ve ever been, I deplore the tendency to shelter disabled children to excess. Parents go to extraordinary lengths to keep their children secure, and it stunts their personal growth. These children grow up to be more fearful, anxious adults, unfamiliar with risk and convinced they cannot enjoy many of the same activities as their peers. They’ve never experienced the rush of running full speed ahead, swinging sky high, or chasing a soccer ball. They’ve never done back flips off haystacks or nearly flown off trampolines. To a small extent, they haven’t had the chance to live, play, and grow in the same ways I did.

So, I want to thank my parents for giving me my freedom, and I want to urge other parents to follow their example. Letting children have a little low-risk fun is not neglect. It is, in fact, a form of special care, because you are putting their needs ahead of your fears. You owe it to your children, and they will be better people for it, I promise you. Life as a disabled person demands resilience and the willingness to face fear head on. Give them the best chance you can.

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.

“Mommy, What’s Wrong With Her?”

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.