identity

My Best, Most Exhausting Self

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I wandered out of my bedroom last week, dressed casually for a walk to Starbucks, only to have my husband point out that I’d colour-coordinated my socks and my hair elastic. Both were pink, not that I’d noticed, and the observation was sitting funny with me. When was the last time I’d intentionally colour-coordinated anything? How long had it been since I’d bothered to choose an outfit, rather than slipping into what was most functional? I couldn’t remember, but it had been several months at least, maybe longer.

After my workplace sent me home in March of last year, I made a noble but short-lived commitment to dress professionally, groom to business-casual standards, and pretend I was going into the office every day. I soon lapsed into sweats and tank tops like almost everyone else, assuming things would be back to normal in a few weeks and treating myself to a little well-deserved sloppiness after a lifetime of self-consciousness. What would be the harm?

A year later finds me as casual as I was then, largely unaware of what I’m wearing and which coloured elastics are holding my artless ponytails together. I’ve allowed my hair to grow to my hips and beyond. My jewelry collection is literally gathering dust. My work wardrobe is wrinkled after a year of sitting unworn on hangers that have been pushed to the back of my closet. I think my fancier boots and heels are in a box somewhere; I’ve moved and have not yet unpacked the relics of what feels like a former life – a life in which I left the house regularly and cared what people thought of me.

This new carelessness would have been unthinkable before COVID-19 shuffled my priorities. As a blind woman, I have been conditioned from the cradle to obsess about how I appear to others, by well-intentioned people who wanted the very best for me. Atop the default pressures of feminine presentation—look young, pretty, unblemished, controlled—every trusted sighted person in my life reminded me to remain vigilant about my looks, and to defer to other people’s aesthetic preferences.

My clothes were selected for me, and I was not encouraged to develop my own tastes or sense of style. How could a blind person be qualified to develop such things? I straightened my hair for years because it was fashionable, even though it ate an hour of my life every single day and I didn’t enjoy the dry, staticky outcome. I submitted to makeup before musical performances and special events, but it irritated my skin and I didn’t feel I needed it. I worried constantly about things I couldn’t visually verify for myself, consumed by the fear that if I didn’t embody a narrow put-togetherness, people would never see past my disability.

From a shockingly early age, I was warned that a sighted world would expect me to be disheveled and clueless. I must not play into those stereotypes, for my own good and the good of blind peers. To seem as sighted as possible was to be respectable. Didn’t I want to be respectable?

As an adult, I gained more autonomy. I started choosing my own clothes and paying a friend to design jewelry according to my personal tastes. No anxious presence was hanging over my shoulder, insisting I look unhealthy without makeup. I haven’t straightened my hair in years, and hairdressers are always exclaiming over how healthy it is. (Refusing to scorch, dye, or saturate it with product will do that.) I followed dress codes where appropriate, and I genuinely enjoyed formal dress, but overall I embraced the intoxicating adult privilege of deciding for myself what I would and wouldn’t do to look a certain way to others. I got to decide that unless makeup and fashion and messing with my hair brought me joy, unless they were part of my authentic self-expression, I wouldn’t force myself to do them. Sure, I wore dramatic makeup on my wedding day, and I loved an excuse to pretty up, but I was no longer spending hours getting ready just to go get the mail.

Before the pandemic, I’d have told you I was being my best self. But my husband’s throwaway comment about my spontaneous colour coordination made me realize that my best, pre-pandemic self, while slightly more emancipated, was still a little exhausting. A lot exhausting, if I’m honest.

She worked very hard to be acceptable to the world, she worried about the opinions of people who had no power over her—who may not even have noticed her, in fact—and she expended her already-scarce energy coordinating her hair elastics with her necklaces with her shoes and so on.

She shied away from bright colours because what if, God forbid, she picked two things that clash a little? She dreaded the wealth of makeup tutorials for blind people, fearing the new baseline standards for blind womanhood would soon include excellent makeup skills, on top of all the other stuff she hadn’t yet mastered. She placed her body mass index above her health and fitness, because being visibly disabled was only bearable if the rest of her was without flaw, and because internalized fatphobia was a demon she hadn’t conquered yet.

So she was more autonomous, yes, and bold in her choice to rarely wear makeup and let her eyebrows go a little rogue. But was she free?

Oh no, dear friends, I see it now. She exchanged one type of restrictive lifestyle for another, told herself she was in charge, and called it good enough. It took a very different type of restriction to nudge her to the back, letting me step forward and realize that my ideal self never existed. Chasing her was only going to make me tired.

Staying inside a lot and living in sweats has not been my idea of a good time, and I do look forward to wearing dresses and skirts and blazers again. However, I’ve been confronted with the reality that the things that most need my attention are not, and have never been, my outer packaging. I should be more focused than ever on becoming a better cook, traveller, artist, friend and community member. Resilience and confidence will take me so much further than obsessive colour coordination anxiety. No one liked or admired me for my fashion sense, though I don’t do too badly on that front when I try. They liked me as a writer, musician, and loving human being, traits that will survive anything, even a pandemic.

In moments when the world feels like it’s ending, you want the confident, resilient people by your side. You aren’t going to care whether their hair accessories match their socks. You’re going to care about their ability to keep you safe and move things forward. More than a year into this, I feel like I’ve shed so much, and discovered even more. I can keep myself and others safe. I can move things forward. Everything else is just fear and marketing.

Who I am, in this difficult moment, is the only self with whom I ought to be concerned. She’s the only one who actually exists, and I like her for her increased interest in a more just world where a pandemic wouldn’t mean preventable death on a grand scale.

The thing is, when she’s not obsessive and fearful, when she’s working hard on things that bring real value, I quite like this new self. I like her renewed relationship with art for art’s own sake. I like her ability to do well at her job, no matter what she’s wearing while she does it. I like her practical acknowledgement that while we all fit ourselves into boxes to maintain a functioning society, she gets to choose whether to lose sleep over how well she is fitting inside hers. I like that, for the first time in decades, she is neither exhausted nor exhausting. While crises often bring out the worst in people, she has stumbled, quite by accident, upon her best.

Eventually, I will go back to my former life, the one where what I wear and look like does matter, regardless of what I might wish. I will start paying more attention to my appearance again. I will begin slotting myself back into mandatory boxes, just as before. It’s inevitable. Some form of confinement, in my line of work and way of life, is inevitable.

But obsessing, fretting, self-diminishing are optional. They always were, and I don’t think they will be useful for whatever is coming next. Faithful as they’ve been, familiar as they are, I think I’m ready to get to know myself without them.

Make Yourself Uncomfortable. I Dare You.

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Let me start here, with a question I’ve had to ask myself many times recently: What is your personal comfort worth to you?

 

More specifically, what would you give up to avoid feeling unpleasant things like awkwardness and shame?

 

I invite you to be radically honest with yourself for this one: What are you willing to let someone else suffer so that you can feel comfortable in your skin? Is there a cost for comfort you consider too high, and if so, what is it?

 

Amid 2020’s many conversations on race, gender, queerness, class, and ability, I’ve been seeing the same theme cropping up over and over again: Discomfort. The people with the most privilege are made most uncomfortable by these topics, possibly because they believe they have the most to lose or, as race and gender columnist Shree Paradkar pointed out in this brilliant interview, because they worry that what the privileged have done will soon be done to them, in a kind of vicious, table-turning reckoning. The oppressors shall be oppressed. The straight, white, wealthy, highly educated male will somehow lose his right to be free, to marry, to own property, to vote, to have a voice, to run things, to be heard, to be respected, to hand out inflammatory hot takes on Twitter.

 

Perhaps nondisabled people have terrifying visions of a new world order where disabled people lock them into the institutions and low expectations that were once reserved for them.

 

Perhaps middle-class white writers like me are under the impression that if we let this “diversity thing” get out of hand, we will soon find ourselves crushed beneath the weight of all we have ignored.

 

(Perhaps marginalized groups aren’t actually calling for anything like this, and these fears say a lot more about the privileged than they do about those who call them out. Moving right along…)

 

I suspect that were it not for the visible disability that has defined and marginalized me from birth, I would be bleating just as loudly, defending my right to a comfortable life, free of hard questions, free of the obligation to make room at the table, free never to acknowledge that I’ve been playing my life on ‘easy’ mode, while so many have been stuck on ‘very hard.’

 

Yes, my whiteness has been a protective shield, one I liked to pretend wasn’t there at all so I could tell myself I merited everything I’ve been given. But the one thing I have never experienced for more than a moment here and there is comfort in my skin. My broken eyes and long white stick have seen to that. Fitting in is a foreign concept, and I know exactly what it has cost me to live at the service of other people’s comfort.

 

My entire life as a blind woman has, to one degree or another, revolved around other people’s need to feel comfortable with me. Different is automatically discomfiting, and it was my responsibility as the disabled person to mitigate this as much as I could. I must never put people on edge. I must never do anything too ‘blind.’ I must look and behave as much like a sighted person as possible, and I must face every rude question, every invasion and every aggression with saintly patience. I put people off, you see. People shouldn’t be held accountable for what they do and say when they’re uncomfortable, should they? People can’t progress beyond what they’re taught, can they?

 

As for my comfort? As for my desire not to feel unpleasant things like awkwardness and shame? That luxury isn’t mine to have.

 

If the person asking me why I bother to get a job makes me uncomfortable, well, them’s the breaks. People don’t know any better. Educate your little heart out, and move on, kiddo.

 

If powerful school officials and academics debating my right to an equal education makes me uncomfortable, well, I’d best work extra hard to prove them wrong. It’s on me to protect my rights and my dignity, to be a good example so the next disabled person won’t have it so hard. No pressure.

 

If the man dragging me by the waist because he insists I’m going the wrong way makes me uncomfortable, well, maybe I should get out of public life if I can’t handle the consequences. People are going to help in ways I don’t like, and I might want to try gratitude on for size. It’s not their job to be up on the latest how-to-help-disabled-people trends, come on.

 

If people congratulating my husband for “taking me on” makes me uncomfortable, maybe I ought to consider the fact that not everyone would be willing to “take care” of a blind partner. I’m really very lucky, you know. (My husband’s disability is invisible. The emotional labour I invest in supporting him through it goes uncongratulated, and so it should.)

 

I’m losing some of you, I know. You’ve heard all this before. It’s all very sad and whatever, but what can you do about it? You’re very sorry I had to go through this, that so many people had to go through this, but … shrug? You’re pretty sure you’re one of the good ones? Thoughts and prayers?

 

Stay with me just a moment longer, because I think I know where you’re coming from. If you’ve never walked into a new space and been physically blocked by people who thought that, just by the look of you, you shouldn’t be there, I can understand how you’d clutch your comfort close. If you’ve never had your hard-won qualifications dismissed because one glance convinced someone you were incompetent, I can see how you’d find all this a little mystifying. If you’ve never been asked, encouraged, even ordered to put up with abuse because your identity makes someone uncomfortable, then absolutely, I can imagine you’d be willing to give up an awful lot to make sure you never experience that.

 

I, privileged though I am, have lived with all of these realities, and I know the cost of someone else’s comfortable life. There are many levels of oppression I will never experience because I am a middle-class cisgender white lady with a pretty enough face who can usually get people to warm to her if they give her a minute or two to try. I’ve never been accused of committing a crime because I “looked” guilty, never been trained to fear the authorities the way Black and Indigenous people have. I’ve never been spat on or screamed at because I spread the “Chinese virus,” or because I belong to a religious minority, or because my gender presentation offended someone, or because someone assumed I must be a terrorist. And I will never get stuck behind the layered barriers faced by fellow disabled people who have racial, sexual, gender and other identities that put them at risk and push them even further to the margins.

 

Yet, I have lived in a visibly disabled person’s skin long enough to understand that each time we are made comfortable, each time our privilege is upheld, someone else suffers for it. Someone else is made uncomfortable. Someone else feels awkward. Someone else feels the shame and displacement we dare not shoulder.

 

This is what keeps me up at night, how attached I am to being comfortable, how in love I am with the security blanket of meritocracy and the bedtime-story mythology of ‘work hard and you shall be rewarded’ or ‘you get what you give.’ And if you’re white and disabled, if you’ve known one kind of oppression but have a hard time getting fired up about the kinds you don’t personally have to confront on a daily basis, I see you. I see you and I’ve been you and I think maybe you’re a little bit in love with that blue-sky meritocracy, too. You’ve hustled, haven’t you? You’ve worked hard and broken barriers? Why should anyone take that away from you? All this is making you a wee bit uncomfortable, isn’t it?

 

Yes, I see you there.

 

It’s time to sit with those sleepless nights. It’s time for me and, I hope, for even one person reading this, to move beyond conversations about discomfort. It’s time to stop giving each other credit for allowing ourselves to be uncomfortable, because that’s not an end. That’s the very beginning, the very first step. Much as we may resist it, Shree Paradkar was right when she asked that if the price of comfort is violence, oppression, murder, systemic marginalization, then what on earth is comfort really worth? Why are we celebrating our selfless willingness to experience discomfort when there is so much on the line? Why did I ever believe the lie that a little shame, a little awkwardness now and again would be enough?

 

So I’ll ask you again: What is your personal comfort worth to you? Is it worth violence directed at people you may never even meet? Is it worth the marginalization, abuse, and shaming of people who have never been allowed the luxury of being comfortable in their skin?

 

Think about it. Lose a little sleep. Watch how much you can grow when you stop being quite so comfortable. I dare you.

The Blind Girl Who Sings

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In her memoir, Hourglass, Dani Shapiro writes about a “third thing” that all married couples should have in order to live happily together long-term. The first thing is you, the second thing is your spouse, and the third thing is the external glue that unites you. It could be a common taste in music, or the process of raising your children, or a mutual love of the outdoors. Whatever it might be, you need a third thing to give your relationship shape. And, as I read about this concept, I realized that music is the “third thing” in my relationship with myself. There’s me (first thing), disability (second thing), and music (that essential third thing).

I’m a complete nobody, but while I was growing up, I had a modest musical reputation. Rural surroundings made it easier to stand out, and my family’s love of music was all the encouragement I needed. One of my earliest memories is picking out “Mary had a Little Lamb” on my grandmother’s piano, refusing offers of help with growing stubbornness. At five, I was singing publicly. By the time I left home for university at seventeen, I had sung competitively for eleven years, and was a common figure at local fundraisers, funerals, weddings, and other community events. I’d never be Idol material, perhaps, but I was dependable and versatile, occasionally bringing crowds to their feet. Sometimes, I’d even win competitions. It was enough.

Once I began studying communications and preparing for a career centred more on writing than music, I let much of my talent go dormant. I still sang to myself constantly—to the dismay of my roommates, I’m sure—and found the time to sing with friends and perform at the occasional family funeral or wedding. I had shifted gears dramatically, releasing my careful posture and letting my exceptional lung capacity deteriorate. Music seemed to have no fixed place in my new reality, and city living meant that if I’d wanted to claw my way back up to where I’d been, I’d have to fight for it. Stressed as I was by academic pressure, chronic pain, and mental health struggles, I didn’t have that fight in me. I focused on writing, sang exclusively for fun, and made noises about joining a choir someday. Two years have passed since my graduation, and serious musical pursuits are still at the bottom of my to-do list.

Though I’m occupied with other things, I miss being a singer every day. I miss it for the obvious reasons: the rush of performing for an enthusiastic crowd; the joy of learning new and challenging pieces; the grind of endless rehearsals that somehow turn into effortless beauty when you’re looking the other way. I miss dressing up and connecting with strangers and congratulating fellow musicians. It could be gruelling, but I miss it dearly.

There’s another dimension to my longing: music was my conduit to a life less defined by disability. People often thought of me as “that blind girl who sings,” it’s true, and many of them waffled on about my vocal gift being divine compensation for my undesirable eyes. Even so, while I was singing, I wasn’t thinking about cane technique or traffic patterns. When people flocked to me after a performance to tell me my voice had meant something to them, no one was dwelling excessively on my broken eyes. If someone reached out to touch me as I passed, it was out of a desire to express something more positive than “You’re going the wrong way! I must save you!” Adjudicators were mostly impartial, occasionally referencing my lack of eye contact with audiences but otherwise more interested in what I sounded like than what I looked like on stage. With a few exceptions, I was judged for my talent, hard work, and emotional expression. Nobody who watched me earn a standing ovation with “Don’t Cry for Me, Argentina” was likely to label me incompetent, graceless, or pitiable. Music, especially in the minor leagues, was as close to meritocracy as I was ever going to experience, and I had no idea how valuable it was until I had to live without it.

The musically-talented blind person is a narrative with which society is comfortable and familiar. Few people questioned my right to inhabit that world. My “We’re not in Kansas anymore!” moment came in a rhetoric class, a couple of years in to my communications degree. I was unpacking my laptop, lost in thought, when a student I’d never spoken to before approached me.

“Why are you here?”

The question came with no bark on it. It wasn’t hostile, but there was a straightforwardness to it that made it shocking. Immediately, other students began to gather around, wondering how this would unfold.

“I’m in this course, so…”

“Right,” he continued, “but why are you here? In university?”

“I’m taking the Bachelor of Communication Studies program, and this class is one of the option courses.”

“I know, but blind people can’t be writers.”

It dawned on me that I didn’t have to participate in this bizarre conversation. I was being baited, or insulted, or something. Being a dedicated glutton for punishment, I responded.

“Of course we can be writers.”

“But how?”

By now, he was starting to sound genuinely curious. Receptive, even?

“Well, I use a computer, like everyone else…”

A few other students pressed closer, making disapproving noises. The student continued, sounding defensive.

“Well, I’m not up on all the technology…”

Clearly not.

Class began at that moment, interrupting one of the most unsettling conversations I’d ever had. As the instructor introduced the course outline, I realized, all at once, that I was back at square one, back to proving myself, back to basics in the worst way. Blind communications professionals made less sense to people than blind musicians, it seemed, and I had never felt more disabled. The student and I eventually became friendly, and I’ve since learned that the blunt approach I found so off-putting is simply part of his communication style, but he reminded me, whether intentionally or not, that I must always be ready, at a moment’s notice, to explain my place in the world.

The oft-repeated observation about minorities needing to work harder, shine brighter, climb higher than everyone else just to be regarded half as talented still holds true. Being disabled is a little less demoralizing when you have some talent or skill that helps you stand out for something other than your disability. If your reputation as a singer or designer or writer or chef becomes more powerful than your reputation as the weird girl with the stick, or the weird guy with the wheelchair, you’re winning. The trick is to train people to see your brilliance before they see your supposed deficiencies. Distract them with your finer points, and maybe they’ll forget about all the ways you don’t fit in.

There’s plenty of bitterness buried in this truth, but I’ve found a way to put a more encouraging spin on it. Instead of looking upon music as the only part of my life that made much sense, I choose to view it as a valuable skillset that set me up for greater success in other facets of my life. All those public performances have cured me of paralyzing stage fright. Public speaking doesn’t scare me, and thriving under pressure comes more naturally than working in slow-paced, gentle environments. Musicianship expanded my social circle, increased my confidence, and helped me shape my identity outside of the box marked “blind.” I may have been the “blind girl who sang” to most of my community, but that’s still better than simply being “the blind girl.” Now, I can be “the blind girl who writes,” or “the blind girl who edits,” or, you know, “another disabled human trying to live her life.” I’m happy enough in all of those boxes.

I hope every disabled child has the opportunity to find their third thing. Maybe, like me, they’ll discover fourth and fifth and sixth things, just to keep life interesting. These days, writing and editing have become almost as essential to my identity as music.

Discover that third thing. Give your relationship with yourself shape and definition. Allow others to see past the cane, or dog, or walker, or their own perceptions. Do it for yourself, primarily, and watch as other people begin to notice you in ways far more pleasant than “Hey! There’s that disabled person I always see at the bus stop!” Perhaps you’ll master that third thing to the point of renown, or perhaps you’ll choose to embrace it quietly. You do you.

Wherever your journey takes you, find your third thing, and be seen.

The Man Who Taught Me To Fish

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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 resilient, 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 mundane things like the location of straws at the Starbucks near my apartment, I experience a moment of undiluted triumph. 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 slow progress is worse. Even so, as 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.”. 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 patient enthusiasm, I realize I’m feeling just a little less blind, a little more curious about the world around me.

* * *

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 rhubarb plant, an earthworm, a bird’s nest. New kittens were placed delicately in my eager hands, and I was permitted, even encouraged, to hammer in a few nails or 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 abstruse 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 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 two-dimensional diagram. I think a 3-D model will make way more sense to you. You’re not dumb; I know you can understand this. See?”

Sure enough, as he points out each facet of the cube, demonstrating 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 self-doubt–no room at all for surrender. 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 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 feistiest 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 incapable. Disabled, sure, but never incapable. I was discouraged from wallowing in self-pity, or inviting anyone else to feel pity, either. Through patience and determination, my father convinced me that I am strong—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.

Dead Ends: 6 Battles I Refuse To Fight

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I’m a fan of healthy debate, and since I can see grey in just about every conceivable area, I’m all for engaging with everyone about nearly every topic. However, I’m finding it progressively less useful to engage with certain types of people, who continue to pick fights with others about debates that should, in my opinion at least, have been retired long since. Some perspectives are simply too antiquated, inaccurate, or unconstructive to be worth examination, and today I’ll present a few of the arguments I’ve promised myself I will never become embroiled in again. Part of a healthy lifestyle is knowing which battles to fight and which are lost causes, and this is a list of arguments I believe we need to put to bed, once and for all.

1. Cane versus guide dog: travel is intensely personal, and any cane vs. guide dog debate needs to account for individual preferences, needs, and abilities. Guide dogs offer numerous advantages, but they are not the only efficient mobility tool. Some blind people don’t like dogs, dislike guide dog travel, feel more confident with a cane, and/or are unable to afford a dog. Additionally, canes offer their own advantages. You don’t need to feed, relieve, or plan your schedule around a cane’s needs, and the cane provides tactile feedback some blind travellers, like me, consider essential. So, however you might feel about it, please stop arguing with people about which is better. Instead, focus on the advantages and disadvantages of both, leaving it up to each blind person to decide for themselves. Blanket statements and definitive answers simply aren’t useful, so there’s no point in resorting to them.
2. The duty to educate: I have always valued my ability to educate able people, and am usually open to answering questions and spreading accurate information. Education is one of the primary purposes my blog exists, and was the original reason I began it at all. I don’t align myself with those who insist it is every disabled person’s duty to educate, though. If you enjoy it, and find yourself routinely annoyed by people’s ignorance, then you should certainly raise awareness and answer as many questions as you’d like. If you’re more concerned with going about your business unencumbered by other people’s curiosity, or if you just don’t like putting yourself or your ideas out there, by all means refrain from doing so. Ultimately, you are the only one who should dictate how you spend your time, so I hope people will eventually stop squabbling about duty and purpose and obligation.
3. Public versus mainstream education: I spent grade school and postsecondary school in mainstream education—that is to say, I attended publicly funded institutions and did not generally receive specialized education tailored to blind students. The only school for the blind in my country was too far away to be a viable option, and in any case I preferred to be integrated into the sighted world as much as possible. I’ve heard horror stories about schools for the blind. People talk about lowered academic standards, inadequate enforcement of social skills, abuse that went unchecked, and a serious lack of encouragement when it came to helping blind people prepare for independent living. By contrast, I’ve heard other students praise their schools, having learned valuable skills mainstream schools usually cannot teach, and being among people who understood them and their struggles intimately. My own experiences with public school were mixed. I had to balance the benefits of inclusion with the severe lack of resources my rural school was able to procure. All in all, I don’t think it’s useful or wise to argue back and forth about which type of education is objectively better. The reality is that the subject is too varied and too personal to debate properly, so while it’s fair enough to pick apart the merits of specific institutions, making general statements demonstrates a disregard for nuance that seldom does any good.
4. Sighted versus blind partners: I covered this topic extensively in previous posts, and that’s the last I really want to say on the matter. It’s all very well to discuss the merits of dating both types of partners. Blind partners are able to understand us on a gut level, which can be enormously comforting. Sighted partners are typically able to provide assistance, such as driving us around and helping us navigate unfamiliar areas, which is an awfully nice perk. I fail to see the point of telling fellow disabled people whom they should date. Regardless of personal preference, we shouldn’t be meddling in anyone else’s love life. Let people exercise agency, because goodness knows able people love to badger us as it is. Promote freedom of choice, and otherwise keep your nose out of other people’s romantic lives.
5. Language policing: this is another topic I’ve covered before, and once again, it’s an argument I refuse to revisit. It’s one thing to be sensitive to other people’s wishes and keep up with the evolution of language, but when you are describing yourself, do so however you see fit. No one—and I do mean no one—has any right to insist you should change or criticize you for using incorrect labels. You are in charge of your self-concept and identity. Don’t let anyone convince you that you’re “doing it wrong.” Everyone is entitled to their opinions, but that doesn’t mean you have to listen.
6. Doing blindness the right way: there is no such thing as “doing blindness wrong.” Really, there isn’t. There are harmful behaviours and unwise practices, but disability is just a personal trait. Just as there’s no right or wrong way to be queer or female, there’s no wrong way to be blind. That doesn’t mean you’re above reproach and should be insulated from criticism; part of a community’s job is to watch out for each other and call each other out, but anyone who tries to claim there’s only one way to live this life is hopelessly narrow-minded. They can share their definitions of a life properly lived, but you don’t have to care.

Do you find yourself sick to death of any dead-end arguments? Feel free to share them in the comments; I’d love to hear them.

Letting Go Of Normal

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Don’t talk about disability. Don’t write about your blindness. Don’t mention anything that makes you different. Feel ashamed of your cane. Never disclose. Blend in. Hide.
Not so long ago, I lived by these rules, and most troublingly, they were of my own making. I’d endured my fair share of awkward stares and been asked to conceal my cane in photographs, but on the whole, I was not discouraged when it came to simply being me. I was blessed with a relatively accepting community that understood blindness was a part of me (but not the only part), and never required me to pretend otherwise.
Yet, I felt an overwhelming desire to “be like everyone else.” I suppose most young people seek a sense of belonging, but this ran much more deeply than a youthful herd mentality. I was always a bit of a loner, so wasn’t as influenced by popularity contests as my peers.
Instead, I pursued a much less attainable goal: I wanted total erasure of my disability. Seeming “too blind” was a mark of failure. I’m not entirely sure where it came from, but a persistent sense of shame dogged me everywhere, and while I tried to combat it at different points and never resorted to refusing to use a cane, I fought my essential differentness just as fiercely. It didn’t show much, because on some level I knew it was foolish, but I carried a lot of internalized guilt and unhappiness, and the voices in my head told me to erase any traces of perceived inadequacy, which included blindness.
The way I saw it, disability was nothing but a stumbling block. If I was sighted, my life would be ever so much more fulfilling. (I’ve grown a whole lot in the last five years. It’s really rather astonishing.) I fervently believed that disability stood in the way of everything I lacked: a job, a boyfriend, general acceptance, and the right to be “normal.” Blindness certainly interfered with these goals, but assigning sole blame to my broken eyes was far more disabling than acknowledging there might be other factors at play.
When I was introduced to other disabled people who were content with themselves, the problem worsened. I was resistant at first. Why is everyone yelling about disability? Shouldn’t we be stressing how normal we are? Why aren’t we working harder to blend in?
My refusal to be identified with my disability began to permeate my writing, my self-image, even my relationships. I resented it when I needed help, and avoided writing about disability, even when encouraged to do so. I went on and on about how I wasn’t “like other blind people.” No no, I was much more committed to assimilation, and far more aware of my place in the sighted world. All these people placing disability at the forefront of their lives had it all wrong. The key to a better life for us all is to be more like able people! Why don’t they realize this? Why?!
I eventually had to come face to face with an uncomfortable truth: disability is not the only or most important part of my identity, but it matters, and it deserves to be acknowledged. Further, I was forced to admit that pretending my disability didn’t exist, and only referring to it in a self-deprecating, apologetic way wasn’t helping anyone, least of all fellow disabled people. The path to equality did not lie in erasure, but in acceptance. How could others accept us if we did not accept ourselves? How could others understand us if we didn’t open up? Why did it feel so wrong to express myself in the context of a disability I live with each day?
Of course, I still feel squirmy when my blindness is brought up in unrelated discussions. I dislike talking about it in job interviews, at the doctor’s office, in cabs, on the bus, on a street corner. I grow weary of proving that I’m more than my blindness, and that my disability doesn’t hamper other forms of self-expression.
On the other hand, I now feel at ease with bristling when someone suggests I put my cane out of sight. I make blind jokes with joyful humour rather than with shame disguised as mirth. Asking for help is still difficult, but I take it in stride rather than cringing with embarrassment. I speak up. I stand up. I don’t hide anymore.
No, blindness will never be the chief focus of my life, even though I consider myself a disability advocate. I’ll always frame my identity in a much more complex way than as “blind girl.” I am a blind girl, yes, but I’m also a writer, and a communications specialist, and a friend, and a lover, and a daughter, and a sister, and a musician, and a bookworm, and, as my Twitter bio reveals, a fierce defender of the Oxford comma.
All this being said, I hope I will never again believe that the best way forward involves concealment and shame and the quest to disappear completely. I’ve found that, in my own life at least, asserting my humanity is best accomplished by embracing my differences rather than shunning them. The world is far more diverse than many would think, and I’m merely a part of that glorious tapestry of diversity. I don’t have to be proud of my disability, or view it as a superpower, or “embrace” it. No one has to do anything in particular; isn’t that the whole point of our advocacy, in the end? Aren’t we all just focused on giving everyone equal choice and license to express themselves however they wish?
So, talk about disability, as often and as loudly as you want (or don’t, that’s okay, too). Write about your disability. Mention anything that seems relevant, even and especially if it makes you different. Never feel ashamed of your cane or service dog or wheelchair, or any other symbol of your disability. Disclose, if you think it’s wise. Don’t blend in unless you really want to. Most of all, never hide. Whether you live in the spotlight or in the most ordinary of circumstances, never hide.

My Words Are My Own: Language Policing In The Disability Community

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“Don’t talk about yourself that way!”
“You shouldn’t devalue yourself!”
“You should always use person-first language. Do not put your disability before your personhood.”

I remember the first time I encountered the language police, and experienced the odd sensation of having my own words criticized and found unsuitable. It’s one thing to be careful when addressing other disabled people and the community as a whole; words are powerful and should be used with care. Even so, I’m not sure I’ll ever get used to being told that the words I use to describe myself are objectively wrong.
If you are at all familiar with the disability community, you’ve probably seen an article or three about the importance of person-first language: “person with disability” supposedly places the person before the disability, preventing people from letting disability define them in any way. (The policing of individual identities has long puzzled me. What is the deal with that?)
I’m perfectly willing to address and describe others in the way they prefer. Respecting individual preferences is a practice I value very highly. Autonomy is a luxury we are so often denied. Far be it from me to take it away from someone else, especially if their voice is not as loud as my own.
However, when it comes to my own identity and disability, I consider my words and preferences to be above everyone else’s. I do not say this out of arrogance or dismissal of the beliefs of others. My ears are always open, and the way I define myself has shifted with time and experience. That said, if I want to call myself visually impaired instead of partially sighted, disabled instead of differently abled, or normal instead of special, that is my prerogative. I do not feel that anyone has the right to dictate how I ought to view myself, particularly not on my own blog. (Besides, I find “person with a disability” clunky, especially when it comes up multiple times. It’s just quicker and easier to say “disabled.”)
For the most part, this misplaced desire to correct and police my language comes from misguided, well-intentioned able people, who do not understand that just because that one blind guy they know doesn’t mind being called special doesn’t mean they’re at liberty to assume everyone feels that way. I’m constantly running into the frustrating notion that disabled people’s wishes are not as important as nondisabled people’s. I am angered and dismayed by the idea that they know better than we do, and it seems that even those with minimal knowledge of the community are willing to tell us we’re wrong.
Surprisingly, though, some of this policing comes from fellow disabled people, who seem to think that I am somehow harming or degrading myself by using terms they deem offensive. Offence is ultimately an individual experience, and I do not believe anyone can seriously expect to know what should offend me and what should not.
I personally find euphemisms like “differently abled” and “handicapable” repugnant. I see them as proof that society still wishes to tiptoe around disability, remaining unable to fully accept and make peace with its existence. Branding me special or differently abled takes away from the fact that my condition is basically just a hardware failure. No, it does not have to define me, and no, it does not consume my whole life, but yes, it’s a meaningful part of me—one I’ve learned to live with in relative contentment. There is no need to gloss it over or refer to it using roundabout language designed to make able people feel better about it.
Please do not police my language when I describe myself. Please do not presume to know how I should treat my own identity. Please do not shame me for the way I choose to look at myself and my place in the wider world. By all means, let me know your perspective on the best terms to use in general, but do not take it upon yourself to set me straight when I’m talking about myself. When it comes to my blindness, and mine alone, I know best.

It’s a Human Thing

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Over dinner with a dear cousin of mine, I was waxing pathetic about how much it grieves me that I can never slice vegetables in a straight line. My cucumbers and carrots end up being very fat on one side while dwindling to a mere ghost of themselves on the other. I was going on and on about how I can never get the angle right, and that blindness really gets in the way. I told her that I imagined there was some kind of mystical trick to it, because there’s no way that everyone was messing up the way I was.
“Meagan, that’s not a blindness thing. That’s a human thing. I can’t cut straight either.”
“Oh…really?”
“Really.”
“You have no idea how much better I feel right now.”

Sometimes, blind people hold themselves to much higher standards than sighted people do. I think it’s because expectations are tragically low: a blind person is lucky if their sighted family and friends think they’ll be able to feed themselves and hold down a job. These low expectations can force some of us to aim very high—even higher than the average sighted person might.

There is this drive to be totally independent (never mind that no one is entirely independent). Even sighted educators and consultants have fallen into this trap. They expect a blind person to go the extra mile to be an excellent student, a fantastic cook, an immaculate housekeeper, a highly successful employee … and on and on. As Leo once said, few sighted people aspire to or manage these things, especially in this age of convenience.

Sighted people aren’t perfect by default. They aren’t even particularly successful by default. Sighted people make many of the mistakes that blind people attribute to their failings as a blind person. Revelation after revelation has led me to the point where I’m not nearly as ashamed of my own struggles, because I now realize they’re a result of being human, not of being blind.

Some sighted people don’t eat neatly, while I generally do, depending on what I’m eating. Sighted people spill things, knock things over, and drop stuff; I rarely make messes, because I’m very careful not to “seem too blind.” Many sighted people don’t know the bus system, while I berate myself for not being familiar with its every component. So many sighted people aren’t great cooks, so now I don’t hate myself for being a mediocre one.

I look around at the students I’ve gotten to know, and I find that even the older ones aren’t as capable as I thought I had to be at, say, sixteen. If they can pop a bowl of soup in the microwave, deal with their leaning tower of dishes, and occasionally vacuum, they’re doing okay. I was taught to see that lifestyle as the lowest point you can ever experience. I thought that, if I wasn’t perfect, then I was being a bad blind person. I was exemplifying all those lowered expectations, while simultaneously failing to meet the much higher standards others had imposed upon me.

While in junior high, I struggled to complete an art-based science project on my own. I’m very creative, but not when it comes to using my hands. My idea of arts and crafts is to put random beads onto a piece of string. Maybe I’ll glue a feather and some seashells onto construction paper and call it a collage. I wasn’t an art person in any sense, and being blind didn’t help, of course. While I was struggling with this exercise, my EA came over to show me a gorgeous science project some blind girl at another school had made. The assumption, I suppose, was that if she could do it, I should be able to do it, too. You’d never ever say to a sighted student, “Someone in a completely different school made this. What’s wrong with you? Why can’t you make this, too? Why can’t you go the extra mile?” Yet, when it came to me, my inability to equal her work was attributed to laziness. I must be an underachiever, right?

I’ve written about why it’s a mistake to compare blind people on more than a superficial level. Having different strengths and weaknesses than another student is not a blindness thing, but a human thing.

Once a blind person grasps this, they can start living a more relaxed and contented lifestyle. Once educators and other professionals who work with us realize this, too, everybody will be happier for it.

Another dear cousin (my cousins are awesome, what can I say?) once gave me this advice:

Ultimately, the only person you have to live with all your life is you. The only person who will always be there is you. Therefore, the only person you have to please, in the long run anyway, is yourself. Live up to your standards, and nobody else’s.

Whether she knew it or not, that advice altered my thought processes and, by extension, my self-concept. It has, in short, changed my life. I hope it changes yours, too.

I’m a Real Girl!

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A few months ago I was enjoying lunch at a pub with some friends. We were chatting idly about Lush Cosmetics, a particular weakness of mine, when the server approached to bring us drinks. Interrupting, she said, “Oh! I’ve heard of Lush, but don’t really know anything about it; I’m not a real girl.”. And this got me thinking…

 

What does it mean to be a “real” girl? Or, more appropriately, what does it mean to be a real woman? Some claim it’s motherhood—that the ultimate purpose and design of woman is to bear children. Our society has moved a little beyond such a primitive and restrictive view, but what hasn’t It moved beyond? Some say it’s about being “girly”. But what does that mean, exactly, and at what point aren’t you girly enough to be “real”?

 

When I was growing up, my lack of “girliness” was keenly felt. Not only was I a practical person who didn’t like to spend my precious free time jabbering constantly about makeup and boys, but I was also unable to fully appreciate many of the pursuits my girlfriends enjoyed. Sure, I could let someone give me a makeover, but I couldn’t look into the mirror and appreciate the full effect. I was not comfortable doing anyone else’s makeup either (though there are many blind women out there who do makeup, hair, and nails with confidence—I applaud their courage!). So, the common sleepover parties didn’t really appeal to me; they were filled with trying on each other’s clothes, giggling a lot, an drooling over “cute” boys I’d never even spoken to before.

 

There are many small things I have not and will never do for myself that would make me a more “real” girl. I didn’t get to pick my own grad dress; my sister and mom, both being possessed of excellent taste, did most of the “choosing”. All I could tell them was what I liked, and having been exposed to very few dresses of that grandeur, I really had no opinion. I soon realized It wasn’t about comfort or the feel of the fabric or any other element I could actually understand. It was all about the look. Similarly, I will not be able to independently choose my own wedding dress. While I’ll definitely have a say in the matter, I won’t be able to comprehend on a gut level how it flatters my body, or skin, or eye colour, or any of the rest of it. Even when I do occasionally let people do my makeup for me (it’s not something I bother with on a regular basis), I can’t say it’s a huge source of excitement. I appreciate the glow of being told I look beautiful, but that’s about as far as it goes in a lot of cases.

 

For a long time, I felt horribly ostracized. I worried that I wasn’t “real girl” material. I fretted that not being enthusiastic about fashion and general cosmetics made me inferior, somehow, even a step lower than someone who can see but who chooses not to get excited about such things. But that server in that pub got me thinking, and she made me realize something: I am as real as it gets. I love perfume, and fragrant tea, and artisan soap, and candles, and pretty dresses. I love picking out skirts and fancy high heeled shoes it’ll take me ages to learn to walk in at any speed. I like Lush Cosmetics, and The Body Shop, and Rocky Mountain Soap Company, and even Scentsy. So, I must be a real girl, right?

 

Hang on, though: if these are the measuring sticks by which we measure a “normal”, “real”, or even “successful” girl/woman, is that not just as primitive as the idea that it is motherhood which defines us? Some girls like things that smell and look pretty, but others don’t. Some girls plan to have children, but some can’t or won’t. Is there some arbitrary threshold past which you are an acceptably real girl and before which you’re straddling the line, not quite belonging? We should be past all that. We should be relating to each other as human beings who like the same things, not as “girls” and “guys”. If my male friend likes candles, then we’ll go candle shopping. It doesn’t mean he’s not a “real” boy.

 

It’s okay to generalize, but when you start pushing people out—especially for reasons they can’t control, like personal preference or in my case, visual impairment—that’s your cue to draw the line. We put people in neat little boxes enough as it is. Let’s all just focus on being real human beings, shall we?

Can You See Me?

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A few years ago, I performed an informal little social experiment while in the grocery store: I began by walking just behind the cart (I was pushing, my sighted companion steering) with my cane out and plainly visible. After a few minutes, I folded the cane and put it in the cart so that it was out of sight. I have “normal” eyes, so I don’t look conspicuously blind; if the cane isn’t easy to see, people don’t always realize right away that I have any sort of disability at all. Since I was just pushing the cart, the blindness really wasn’t obvious. You may well ask what the point of such an experiment could be. Here is what I discovered: while my blindness was on display, as it were, I got pitying, fascinated, or outright terrified looks. Mothers instinctively pulled their children from my path, even when they were in no danger whatsoever of colliding with me. The elderly and the very young gazed at me as though I were some foreign creature they’d never seen before. It was clear that while everyone was looking at me, they weren’t seeing me, the human woman. They were seeing a blind person, and no more. When the cane was out of sight though, people either didn’t notice me at all, or (in the case of the young male population, anyway) looked at me with interest. (This is not vanity; my sighted companion was the one who told me of this!)

 

What have I learned from experiments such as these? Well, quite a few things. One is that people are inherently afraid of (or at least fascinated by) what they don’t understand. Another is that people will never be completely comfortable with difference, no matter how hard we work to encourage tolerance. A third thing is that those with disabilities are hypervisible and totally invisible at the same time. We are either the centre of attention (in a zoo-creature kind of way) or we don’t exist at all. We are either being asked to speak on behalf of all disabled people, or we’re being completely overlooked. We’re either being asked if we need help (or other more intrusive questions) or we’re being severely marginalized. Our canes, dogs, wheelchairs, cochlear implants, talking phones and computers…these all ensure that we are very visible to everyone and anyone who is curious, frightened, or hostile. Yet these things also make us totally invisible as human beings. We are not individuals. Instead, we are archetypes, or representatives, or ambassadors. If we’re not any of those things, we’re not anything at all.

 

These are general observations; do remember that. Before you indignantly point out that not all people treat us this way, please keep in mind that I’m aware of that. I am surrounded by wonderful friends, family, instructors, employers, and total strangers who treat me with dignity, respect, and courtesy. Most of the people I know think of me as an individual and not as a spectacle to be gawked at.

 

The trouble is, there are also many people who do treat me like a spectacle.

People watch me perform every little minor task, exclaiming over it and pestering me with endless questions. I am hypervisible.

People discuss me well within earshot, sometimes complimenting but often just speculating about what might be wrong with me. I’m invisible.

People stare openly at me while I enjoy a day at the mall, being careful not to actually interact with me in any way. I am hypervisible.

People confuse me with other blind people because they recognize the cane but don’t recognize my face. I am invisible.

 

My life is not a spectator sport. My identity is not simply made up of disability and the quest to overcome it. As I’ve said time and time again, there is far more to me than what I can’t do. I don’t want to be anyone’s representative. I don’t want to be “special” just because I’m the first person to take a certain course, or work at a certain organization. Many people with disabilities find themselves pioneering and paving the way (more on that in upcoming posts) but we seldom enjoy it. It’s just another reminder that we’re less an individual person and more a symbol.

 

I understand that you’re curious. I understand that you mean well (mostly). I also find that the open, discourteous way people often stare at me bothers the people who love me far more than it bothers me. Just ask my sister; she’ll tell you what she thinks of people who do that. (She has been known to smile and wave at them until they are shamed into looking away, because she’s gloriously protective. I’m very lucky.) I understand that difference will always be intriguing, and scary, and daunting. I get it. But…

 

Please don’t watch me eat. Please don’t comment on every little thing I do as though it were the most interesting thing you’ve ever seen. Please don’t observe me with an eagle’s eye, leaping to react to my every movement. Please don’t talk about me like I’m not in the room. Please don’t make fun of other people with disabilities (derisively) when I’m present…

 

Please try to see past my cane and get to know my face. Please get past the fact of my blindness and get to know me as Meagan—the professional communications student who loves cats and hates mosquitoes.

 

Can you see me?