childhood

Happy, Capable, Aggressively Okay

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For someone who has always dated men, I have fallen in love with a lot of women over the years. Of course, I didn’t recognize it as love at the time. I was a practically ancient twenty-two before I was sure of my queerness, because I was laughably out of touch with my own feelings. The archetypal queer story line, the one where you know it since kindergarten and come out all at once in a supreme act of courage, never fit me.

I came out slowly, haphazardly, often forgetting whom I’d told and whom I hadn’t. There were no secret girlfriends or covert confessions. There was no formal announcement, no awkward family meeting, no mess. People were either supportive or apathetic, given I had always been with men and it didn’t feel relevant to them. And because there was no closet narrative to speak of, I never quite owned my own bisexuality. It wasn’t hard-won, it didn’t oppress me in any meaningful way, so it felt like I’d cheated, somehow. That’s probably why I hardly ever talk about it; it doesn’t feel entirely real or entirely mine.

Recently, I’ve been thinking more about why it took me so long to realize that I was attracted to women in the same way as men. Some of it was the power of repetition. I always assumed I was straight, “straight as an arrow” as I used to put it, so when I experienced intense feelings for a woman, I imagined all women felt that way about their friends. Spoiler alert, younger self: No they do not.

But the more significant reason for my deep denial is related to my disabilities. When you grow up with needs society deems “special,” it’s hard not to resent your own body. Everything you are told about yourself as a disabled person is dusted with subtle (and not-so-subtle) messages about independence. At home, at school, at work and just about everywhere, you are served the paradox: You are dependent, and you should never depend on anyone. You are not as capable as others, and you should be as capable as everyone else. You are not okay, and you must always be okay.

Early on in my journey as a visibly disabled person, I learned to minimize and ignore my needs. I was the kid who wouldn’t ask to go to the washroom because she didn’t want to draw attention to herself, leading to inevitable and embarrassing consequences. I found it difficult to ask for food when I was hungry. If I got lost, I had trouble asking for directions. I made myself small, believing on some primal level that my needs were bad and wrong.

As I got older and better able to meet my basic needs independently, I learned to ask for help related to blindness, chronic pain, or mental health. I understood that interdependence was the only way I’d be a functional human being, so I mastered that uncomfortable art and gritted my teeth through the asking.

But I was more sure than ever that needing things was bad and wrong, so I sidelined my non-disability-related needs instead. I allowed myself to be bullied. I refused to share my struggles with most people, even those willing to help. When asked how I was doing, I was adamantly, aggressively okay. In that way, I made myself even smaller.

What does this have to do with queerness? If you’ll excuse some gender generalization, everything.

See, I was almost always able to convince men of my strength. If I told them I was just fine, even with ample evidence to the contrary, they usually believed me. Women, on the other hand, seemed to see right through my hard-shelled deception. Many men have cared for and nurtured me over the years, some of them perceptive enough to notice when I was trying to be a hero. But the women I kept falling for—elder siblings, motherly types, people used to looking after others—were the ones who could not, would not be fooled, maybe because they’d used all my tricks to hide their own pain. They were the ones referring me to crisis teams and buying me groceries because they knew damn well I was hungry and dangerously not-okay. They were the ones trying hard to save me from myself, doggedly asking the hard questions, at times offering help in ways that made me feel overwhelmed and resentful.

One of my crushes was so persistent I accused her of being a Mother Teresa type, which, far from deterring her as I’d hoped, seemed to embolden her. (I’m very good at making people go away when I fear they might actually get to the heart of who I am. She would not be fooled and she would not be turned away.)

All of this was hidden from me because of my afore-mentioned denial skills. It’s only in the past few weeks that I’ve realized I am not an open book with the vast majority of people in my life. Friends and relatives have complained that they can never get anything out of me. I tend to redirect conversations back to the other person if things get too serious. Part of me is still fiercely guarded, and I was the last to know about it. I tend to pull back when I sense someone is starting to understand me a little too well, and the moments in which I do overshare happen because I am so closed-up the rest of the time.

Lately, I’ve been sidelining my emotional needs less. I’ve been reminding myself that those who love me are pleased when I share my burdens and hurt when I don’t. I should not shy away from love’s vulnerable imperative. I should receive it as the counterintuitive, subversive gift that it is.

None of my needs is bad or wrong. No disabled person’s needs are bad or wrong. We should be teaching disabled kids to speak up loudly when they’re hungry, thirsty, lost, scared, or in need of a washroom. We should be encouraging disabled people to welcome, not apologize for, their very human, very normal needs. We should assure them that interdependence is positive and necessary, that they need not pay for their “special” needs by pretending to be aggressively okay. We should remind them of their legitimacy as healthy human beings with emotional and spiritual needs, and we should drown out the drumbeat of shame society forces them to march to each day. They’ll get plenty of that shaming from people who don’t love them the way we love them. Contrary to popular belief, hearing these narratives from loved ones is not less painful than hearing them from strangers, nor are these messages particularly helpful.

Listen, friend who is reading this and thinking, “I see what you’re saying, but…”

I am not telling you to abandon advocacy, independence and self-reliance. One of my greatest personal treasures is my ability to take good care of myself when I must. I am only telling you that you cannot make up for your disability by refusing to lean on the world in any other way. You can’t, and you shouldn’t. And when you meet someone who sees right through you, and wants to take care of you anyway, try letting them, because nondisabled people lean all the time. We just don’t call it “accommodation” when they do. Mostly, we call it love.

Whether you know it or not, friend, your refusal to lean as others lean is costing you. One day, you will be in great, undeniable need. One day, you will come to the end of yourself, of what you can do, and you will have to reach out. Take it from someone who knows: It’ll be a lot easier if you practice.

Living Well is the Best Redemption

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Over the past nine months, pandemic-induced isolation has forced me to get more comfortable than ever with my own company. To that end, I’ve been turning more and more to the Harry Potter series, my “problematic fave,” the one piece of pop culture that has shaped who I am more than any other.

Despite their many flaws, not to mention their viciously transphobic author, the Harry Potter books give my soul a safe place to rest. Reading them is like going home in the purest way, even when war and violence consume the narrative. If you’re an ardent fan, you’ll know what I mean. There’s just something about HP.

During this rereading, the most recent of at least a dozen, something stopped me dead in my tracks: The systematic abuse of Neville Longbottom, an anxious, downtrodden student whose brilliance remains hidden for most of the series because he is discouraged from gaining confidence. I’m not in the habit of armchair diagnosis, and I won’t try to guess whether Neville was disabled, but I do know that his anxiety and slower processing of educational materials were rarely addressed in a meaningful way. He was either ignored or berated for his struggles, so much so that a villain posing as a kindly teacher was able to manipulate him with sickening ease by being minimally supportive toward him.

The closer I looked, the more I found to relate to in Neville’s experiences at school. As a blind person who sometimes had trouble processing information in the same way my classmates did, I am familiar with the deep shame of feeling stupid, incompetent, behind. Helpful Hermiones have leaned over to whisper in my ear, less because they were altruistic than because it was painful to watch me flounder. I was a decent student in most respects, which gave me a leg up Neville didn’t have. Even so, the highly visual way most subjects were taught did a number on my confidence. So did the undiagnosed mental health condition and chronic pain issue that I didn’t have the language to describe at the time, guaranteeing I’d go without help for both.

To be crystal clear, I’ve never experienced abuse on par with what Neville endures from Severus Snape, the teacher who bullied him with astonishing regularity. No one was going around poisoning my pets. But I have dissolved in shame as grownups in charge of my educational development belittled me, because they mistook my anxiety for laziness, felt overwhelmed by their inexperience with my need for accommodations, or lacked the patience to wait around while the clumsy blind kid tried to keep up. When I shut down completely in sheer self-defence, their diagnosis of ‘lazy, passive kid’ was confirmed.

Most of my educational experiences were positive, so that I eventually developed the confidence we see Neville embody in his later years. I think most who knew me as a student will be shocked to hear that there was anything negative going on, surrounded as I was by Sprouts and Lupins who liked and respected me. With encouragement and support from dozens of adults, I transformed from a shy, passive mouse into a slightly-less-shy, proactive professional who is always up for beheading snakes and fighting evil. (By snakes, I mean writer’s block. By evil, I mean people who refuse to embrace plain language. Tomato, tomahto.)

So, no, there was nothing Dickensian, or even particularly Harry Potter-esque about my school days. Yet, I can’t help relating to Snape’s victims. as I read about Neville’s toad being tortured, occlumency lessons that involve insults and shouting, Hermione’s appearance and personality being mocked by a teacher entrusted with the education of young children, I wonder at the ease with which many Harry Potter fans have eagerly welcomed his redemptive narrative arc. Somehow, the man so abusive that he scared Neville more than anything in the world—and this is a kid from a sometimes-abusive family whose parents were tortured beyond imagining—becomes a sympathetic, even romantic figure.

It’s easy enough, I suppose, especially if you’ve never known what it’s like to be bullied by an educator. Being mistreated by your peers is one thing. Disabled kids practically expect that. Being targeted by an authority figure is wildly different. I’d wager plenty of Harry Potter fans have never been called babyish, stupid or ‘unlikely to amount to much’ by people who are meant to guide and encourage them. Assuming you’ve never been alone behind a closed door with someone who terrified you because they had the power to make your school life unbearable, who refused to accept you were genuinely doing your best with what you had, then it might be simple enough for you to dismiss Snape’s behaviour as entertaining, or at least excusable. The man was a hero, right? He probably hated teaching, anyway. He couldn’t be expected to suffer fools like Neville.

Plenty of HP fans have experienced exactly that, though, and maybe that’s why these books have always struck a chord with the lonely and marginalized, with kids who felt small and Neville-like. Lots of us had our Snape growing up. Lots of us dreamed of a Dumbledore who would swoop in and put a stop to the injustice. Lots of us clung to these books because they told a better story than the one we were living. These books promised us that one day, we’d be rescued, or become powerful enough to rescue ourselves.

But these very same books largely failed to recognize the trauma inflicted by heroic, “bravest man I knew” Snape. Harry names his child after a man who delighted in making children miserable, and everyone seems fine with that, I guess? How has this never bothered me as much as it does right now? Where have I been?

Since I’m an insufferable optimist these days, I decided I had to move beyond this new understanding to something I could use. So I thought about who Neville becomes at the end of the series, the way he takes the good, does his best to drown out the bullying, and builds a full, compassionate, heroic life. As an adult, he is a respected educator, one who, I feel certain, actively seeks out the lonely and marginalized to show them their hidden potential. In a way, he redeems what was done to him, not through punishment or revenge, but through a life well and graciously lived.

In a less impressive, unconscious way, I have done the same. I have taken the good, tried to drown out the bad, and grown into a fairly capable adult who does what she can to help those around her. And I’ve done a ton of work to understand those who harmed me, because forgiveness is so much easier, at the end of the day, than resentment.

Redemption is neither cheap nor easy. I still wake trembling from occasional nightmares. I still sometimes fall into shame spirals that have their roots in childhood school experiences. There are moments when I wander into a maze of contradictory what-ifs: What if I’d been smarter, or worked harder, or stayed even quieter, or been less frustrating, or cried less, or spoken out more, or tried to explain, or gotten that mental health diagnosis sooner, or been a better blind person, or, or, or…

Self-blame is seductive, because it gives me the pleasant illusion that I had control over powerful grownups, even though that’s a ridiculous notion. Telling myself a soothing story in which I could have been treated better if I’d just tried a little harder is comforting in the moment. Still, I know that the best way to redeem this narrative arc is to live well in the present, to seek out the marginalized and reveal the potential they don’t know they have because they’re too busy holding back tears or trying hard to please the people who bully them. I can pour enough good into their lives to balance things out, at least a little. And a little can go a long way. It did for me.

Like Snape, the tiny minority of educational professionals who mistreated me as a kid have redemptive arcs of their own, perhaps as compelling and surprising as his. Unlike Snape, they usually had more understandable reasons for how they behaved. They did what they did out of frustration, bitterness, ignorance, even what they must have imagined to be tough love. Some were so invested in my success they inadvertently pushed me hard in the opposite direction. Driven by determination, by fear, by overwork and stress, they caused a kid who loved learning to dread school and mistrust her own worth. None of it is okay. All of it is redeemable.

If I choose to, I can play a small part in that redemption, by living well and replacing old, trauma-soaked patterns with positive ones. I can’t decapitate my trauma with a big shiny blade, but this cycle of hurt people hurting people is an evil I can fight, a dark lord I can vanquish because I’m a grownup now. I have a voice now. I can make changes now. I am not a child, and I am not trapped. I am more free, more courageous than that grade-school mouse could have dreamed.

There will be no final atonement, no reckoning. No one is likely to crawl out of the woodwork and say, “Meagan, I apologize for X Y and Z. I’m sorry I stood by and let this happen. I’m sorry I didn’t encourage you. I’m sorry I let my frustration and fear turn to judgment and shame. I’m sorry I mocked you for crying instead of sitting with you in your pain. I’m sorry I was so often the source of that pain.”

Knowing this, I am no longer bitter, or angry, or afraid. I am no longer waiting for an apology. I am no longer wishing for a Dumbledore to appear and see justice done. I am holding the humanity and well-meaning efforts of those who have damaged me in tension with the knowledge that their actions were not my fault, in no way deserved. I am impossibly full of hope.

Hope is not a sword, but it’s enough.

A close-up of Minette, a calico cat.

A Cat to Scorn Me (and Show Me How to Love)

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I’ve heard it said that to achieve perfect balance in life, everyone should have a dog to worship them and a cat to scorn them. I’m proud to say that, having grown up in a household that was almost always populated by both, I must be an exceptionally balanced soul.

Over the years, three dogs have taken up residence in my childhood home, not to mention my heart, and we’ve had the same beloved cat, Minette—moderately scornful, often dog-like in her affection—for 17 years.

She is in many of our home videos. She has slept almost as many nights in my parents’ home as I have. She knows every secret nook, every cozy sock basket and every strategic perch. She made me into a cat person, all by herself.

I’ve cried into her fur after many difficult days, and stuck bows on her indifferent little head on many Christmas mornings. My parents joke that, functionally, she helped raise their kids. Few things in this world bring me more joy than the knowledge that this cat exists.

You know where this is going…

Tomorrow, Minette will be making a trip to the vet, and she will not be coming home from it.

And so, I will turn to writing, as I’ve always done when grief comes knocking, or barging rudely, as it’s wont to do. I will tell the story of a cat who remains, despite the multitude of wonderful dogs in my life, my very best animal friend—a friend who helped me grow, gave me confidence, and taught me that Albert Ellis was right when he claimed love is “largely the art of persistence.”

“You are not Special.”

From the moment she came into our lives as a delicate-looking kitten with a croaky mew, Minette made it abundantly clear she saw no reason to treat me any differently than the other members of the household. (You can try arguing she simply wasn’t bright enough to realize I couldn’t see, but given the amount of things she tried to get away with while I was the only one around, I’d beg to differ.)

No, she would not be moving out of my way, no matter how many times I bumped into her. Nuh uh, she was not going to signal when I was about to accidentally sit on her; I’d just have to learn to be more careful. No, she was not going to spare me from duties like letting her out, letting her in, fetching her water, and providing mandatory snuggles.

And, yes, I was just as capable, as loved, as wanted as anyone else.

This doesn’t sound like much, but as a disabled eight-year-old, I was accustomed to being treated differently by just about everyone in my life. Grownups had different rules, expectations, goals, fears. I struggled to be helpful. I felt out of place. I was uncomfortably aware, as were those around me, that I was the odd one out, despite my family’s best efforts.
But around Minette, I was just another member of her loyal human staff, perfectly able to do her bidding, and perfectly worthy of her unreserved affection. In scorning me–in expecting me to adapt to circumstances not tailored to my every need–she taught me that life is full of surprises that will wind around your ankles and trip you, no matter how unprepared you may be.

Humans would work around me. Dogs would get out of my way.

Minette, not so much.

Balance, right?

“Human, I Summon Thee”

Minette isn’t the least bit imperious. H. P. Lovecraft, who liked his cats “lithe and cynical,” would not have approved. The choicest spot was always as close as she could get to the nearest available lap, and her favourite activity was waking me in the mornings with a torrent of kisses. (Her tongue may have had astonishing exfoliation powers, but I would personally have preferred the alarm clock.)

Since she split her time between indoor and outdoor pursuits, she was often in need of something or other.

“Human, I have kicked my toy under the stove. Help!”

“Human, I need to take up 90% of your queen-sized bed, not this paltry 75%. Move over.”

“Human, I am hungry. I am thirsty. I need to go out. I need to come in. I need a cuddle. I need you!”

For the first time, a fellow living creature  was in sincere need of me, and I was able to fulfill that need. It was one thing to do chores, but it was another to hold, feed, and care for an animal that depended on me as much as anyone else in the family. Somehow, caring for a dog wasn’t quite as validating. The implicit, unwavering trust that cat put in me, a trust I hadn’t yet found elsewhere, not even in my dog, was transformative.

Adults were forever telling me to ‘be careful,’ ‘slow down,’ ‘let me do that for you.’ Dogs were always pushing me out of the way—of traffic, of water, of anything that looked remotely dangerous.

Minette, on the other hand, saw no reason why I should not attend her as faithfully as any other. She barely blinked as I handled her newborn kittens, and was never shy about insisting I find her a treat. Speaking as a blind person who still fights to be useful, nothing builds confidence like a little bit of trust.

“I’ll Be Back”

I don’t know of any cat who loved bigger, harder, more persistently than Minette. You couldn’t get rid of her. I have many memories—God, but they hurt to think about now—of pushing her off my lap as she walked all over my book, or my keyboard, or my plate, or my fancy new outfit. (In our house, you weren’t ready to go out until you’d been sufficiently furred up.)

She had to be on you, not beside you. She had to lie on your pillow or in your arms, not down by your feet. She needed all the snuggles, all the time. And she had a special, highly effective meow pattern in place to make sure she could always get through my bedroom door:

  • Meow #1: inquisitive and chirpy. “Meagan? Are you awake?”
  • Meow #2: cheerful and warm. “I knew you were up! Let me in, will ya? I haven’t walked all over your head yet today.”
  • Meow #3: confused and injured. “You mean … you’re actually pretending to be asleep right now? Seriously? I can hear you turning pages. I know you’re awake. Not cool, Meagan!”
  • Meow #4: resigned and piteous. “Okay, you win. I am now desolate and despondent, but that’s just fine … I’ll remember that. And by the way, the guilt’s going to kick in any moment now.”

The beautiful thing about having Minette in my life was that I got to observe unconditional, extravagant love on a daily basis. I could push her off my lap five times, but she’d come back six. I could trip over her, accidentally shut her in an empty room, even forget about her. But I could not ever lose her joy at seeing me—her delight in the time I spent with her. No matter what kind of day I’d had, no matter what mistakes I’d made or burdens I carried, there was always that engine-like purr. If I had a migraine, a broken heart, truly torturous chemistry homework, she was there. For her, my need for comfort was always valid.

I hope I can learn to love like that—with a few more boundaries and a little less keyboard-trampling, of course.

Run free and chase the sunbeams, Meeners. Thank you for everything you gave us.

Lightning, Molasses, and the Search for a Happy Medium

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It doesn’t take long for new acquaintances to notice that I operate at a quicker pace than most. I eat quickly, talk quickly, walk quickly (when I can safely do so), and get through tasks with a speed that stands out. I’m not sloppy, and I don’t like cutting corners, but there’s no denying my inner rhythm is a little out of whack. Sometimes it’s handy, like when clients praise my impressive turn-around time for assignments. Other times, it’s awkward, because when people ask, “What’s the rush?” I have no satisfactory answer for them. All I know is an austere, unforgiving clock has taken up residence in my head, and I can hardly think for the ticking.

I wasn’t always so frantic about everything. When I was little, I was frequently reprimanded for being the last one—the last to finish my dinner, the last to straggle outside for recess, the last to pack up my backpack. My punctuality wasn’t usually an issue, but I did tend to take more time than average with hands-on tasks where my agile little mind couldn’t save me. Give me an abstract problem to solve and I was a bolt of lightning. Hand me a pile of papers to organize and I was a pool of molasses. If the task required work-arounds to accommodate my blindness, that pool froze solid.

Somewhere along the way, I internalized the idea that I should always be in a tearing hurry. Part of it can be blamed on patchy time management skills that only improved with adulthood, but a lot of it can be traced back to my frenetic childhood environment.

“Hurry hurry,” grownups would chide, as I freed a stuck zipper or hunted an object I’d dropped. Never could I keep up, and even when I managed to accomplish something in a timely fashion, it was likely that I’d messed it up. The faster I moved, the clumsier I became, and my anxiety clamped down with crushing force.

Buffeted by duelling forces that insisted deliberate movements were bad but mistakes were also bad, I surrendered to a passive paralysis that froze me in place, unable to rush through tasks or tackle them at a pace that suited me. When you’re convinced that nothing you do will please those around you, standing in place seems safest, and that’s often what I did. Anxiety was mistaken for stubbornness, and I developed a reputation for being the kind of person who would stand gleefully by until someone else did my work for me. This couldn’t have been more off base, but I had neither the guts nor the eloquence to communicate that, and figured no one would listen if I tried.

Most kids would have dealt with this situation by learning by observation, asking questions, and/or finding trusted adults to fill in the gaps. I responded by nurturing an intense fear of failure, to the point where even minor errors seemed apocalyptic. Of course I cried when I got a mediocre grade or tripped in public; I genuinely believed the world was ending, and that judgment, when it came, would be swift and harsh. The vast majority of people in my life would have been horrified by the intensity of that fear, and would have done their best to set me straight. For whatever reason, I kept silent about it, and moved out on my own with the debilitating philosophy that doing something badly was infinitely worse than failing to do it at all.

For a while, I was able to coast along, with no pressing need to question this shortcoming. Eventually, however, after I realized I couldn’t even get a little turned around on my way to the grocery store without hours of brooding, I understood that if I didn’t learn to embrace my inevitable failings, I’d never get anything done. Learning by trial and error is one of the most powerful tools at a disabled person’s disposal, and it was vital that I teach myself to be comfortable with falling off the horse and clambering right back onto it. If I carried on believing that a job imperfectly done was not worth the effort, I was going to find the world an exceptionally inhospitable place.

Five or so years later and this demon is still with me. Every time I make a mess or move ungracefully, the urge to disappear overtakes me. Getting lost still feels like the worst-case scenario, and I hate to cook a new dish in case it doesn’t turn out. I’m still watching my disabled friends treat failure like an old friend or benign annoyance, wishing I could be so relaxed.

On the sunnier side, I’m making progress. When I learned during my first mobility lesson in years that I had been using my cane incorrectly my whole life, my reaction was a fierce desire to kill a decades-long habit and do whatever it took to improve. I didn’t dwell on all the ways others had failed to teach me the right way, nor did I fixate on all the people who must have noticed and thought less of me. Even one short year ago, I’d have collapsed in shame. I never would have responded with a mulish refusal to let my mobility journey end there. Getting lost is still the horror of horrors for me, but once I master proper cane technique, my next project will be to get good and lost, on purpose, repeatedly. I doubt I’ll ever enjoy the process, or intentionally seek out new routes just to challenge myself, but I can at least rewire enough to see failure as a bend in the road instead of a stop sign.

All this scares me silly. I could pretend it’s invigorating, that it feels like my world is opening up, but that would be disingenuous. Mostly it’s making me want to crawl in a cave where no one can find me. It’s not fun, it’s not an adventure, and it’s likely to be something I’ll struggle with for the foreseeable future.

There’s this, though: growth hurts. Growth is hard work, and it’s frightening, and if you’re entirely comfortable, then you’re probably not progressing. It’s lovely and warm here in my comfort zone, but I’m finally getting tired of the run-freeze-run pattern I’ve created. I’m content and confident enough, at long last, to think less about survival and more about joy. That means facing those demons with courage and—yes—a little stubbornness.

My unsolicited advice to you? Slow down, and let the people in your life do the same. Encourage people to try (and fail) on their own. Give everyone, kids and adults, the space to be independent, even if it’s faster or more efficient for you to jump in. Kids, in particular, may fight you on this, but unless an adult has asked for help, stand your ground. Take it from someone who knows all about it: they will thank you. The gratitude may not come right away, but I promise you it will.

And if you take nothing else away, remember that as rushed as we all are these days, there is almost always time to let someone learn.

“A” is for Advocacy

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I’m not a parent, but the internet has exposed me to the struggles, joys, and everyday dilemmas of parenting in this ever-connected, ever-judgmental world. I read discussions about how to teach kids to interact more gracefully on the playground; how to remove bread from a hot toaster; how to play traditionally-inaccessible board games; how to shave sensitive areas of the developing body. Each time I see one of these, my heart soars. My parents had to raise me with sporadic, impersonal support, while parents who knew nothing of disability looked on with varying degrees of disapproval. They made it work, but there are many gaps in my basic skillset that might have been filled by an online community of disabled people who were willing to share their wisdom. If Disability Wisdom or VI Talk had been around when I was growing up, I might not be so wary of toasters.

The one skill that seems underrated, particularly in rural settings, is advocacy. Several of my teachers, visual consultants, and special education coordinators were adamant that I master an array of miscellaneous skills, like cutting paper with scissors, drawing the human form (with what little vision I had), and writing a legible signature. My childhood involved hours spent cutting a piece of blank paper into a series of meaningless rectangles that were destined for the recycle bin. I practiced my signature each day in a special book, trying vainly to copy the raised signature on the front cover, and wondering why sighted people were allowed to have illegible scrawls while I had to achieve perfection. (These days, my signature is defiantly unreadable.) I connected dots on graph paper. I completed strange worksheets with tactile circles, using a different colour for each one. These exercises ensured that I’d always be comfortable with scissors, and have a rudimentary idea of how to draw a human face, but they didn’t teach me how to stand up for myself, or ask for accommodations, or interpret my rights as a disabled person. Every now and then, someone would mention that I must always be my own advocate, but the concept was never expanded upon, and far more attention was paid to how I held a pencil—a pencil I’d seldom use, since I couldn’t handwrite—than how well I understood what being a disabled adult might be like.

Steeped as I was in traditional Catholic culture, I was an obedient student rather than a respectful one. Fear and anxiety were far more influential than respect or interest, and while I enjoyed school and hungered for knowledge, my primary and secondary education rarely encouraged me to grow into anything more than an unquestioning rule-follower. I’d occasionally be chastised for seeming too passive, or criticized for failing to take initiative, but years of conditioning kept me from voicing disagreement or making my own decisions in almost all cases. After all, what did I know that grownups did not? Who was I to request accommodations that made sense to me when someone who earned a lot of money and used plenty of high-level language felt differently? How could I ever provide insight about my own learning style when someone with decades of experience knew best? I carried on in this way for far too long, wanting to take the wheel but convinced I’d cause a wreck. Systematic rejection of my ideas and insights bolstered the illusion. By the time I left grade school to start my postsecondary adventure, I had very little idea that my rights would constantly be challenged, or that I had disability-specific rights at all.

In university, I soon figured out that even though I had no foundation to build on, I’d have to learn how to be my own advocate, and learn it quickly. My life and education were in my own hands, and those hands were more capable than many had let me believe. With ample coaching and encouragement from newly-discovered disabled friends, I engaged in the controversial art of speaking up. I practised saying “no,” or “yes, but not that way,” or “please Don’t grab me,” or “I want to try this instead.” When roadblocks were put in my path, I didn’t docilely accept them as immovable parts of my reality. Sometimes, I was even a little bit firm. I worked to let go of “I’m sorry, that’s probably silly” and “What do I know?” In place of those familiar crutches, I paid attention to what worked for me, and asked for it. When charm failed, which wasn’t often, I used blunt logic, and usually won. It was a novel and exhilarating way to live, though it came at a cost. Since acquiring advocacy skills, my life has never been as calm and peaceful as it once was. Taking control of your own life is exhausting business.

Living in a more tolerant and accessible world doesn’t mean everyone can sit back, relax, and forget how to take ownership of their lives. If anything, widespread complacency about our supposedly-civilized society means parents need to be even more diligent about instilling advocacy skills in all children, not just disabled ones, early and often. I’m not suggesting that children should be taught to despise authority or behave disruptively for the sake of it, but they should be as prepared as possible for the ignorance, bigotry, and exclusion they will inevitably face. Adults are not always right, and it’s neither healthy nor safe to teach kids otherwise.

Whether you’re a parent of a disabled child or a newly-disabled adult, don’t ignore the limitations of a life without solid advocacy—a life far more limiting than a disability could ever be. Be mindful that third-party advocacy will never match the advocacy you can do for yourself. Value the insight and experiences of experts, but be open to customized solutions. Seek advice from the disability community, but remember that conventional wisdom is not without merit. Recognize that not every problem is a disability problem; some of them are just ordinary problems that can be solved in ordinary ways. Emphasize the powers of courtesy and respect, but never underestimate well-harnessed anger. Acknowledge social hierarchy, but be aware that hierarchy is commonly abused.

Parents may resist teaching advocacy skills, and I have the greatest sympathy with them. Advocacy is frightening, and frequently disappointing. It is delicate, thankless, much-maligned work, especially when it’s done by young people. It will not always produce the hoped-for results, and it’s rarely much fun. Understand that advocacy is tough to cultivate, and likely to inspire nasty pushback from people your child loves and trusts. Be ready to deal with the possibility that your child’s advocacy will sometimes be directed at you, and that you won’t like how it feels. Know that you will need to respect their advocacy, even if it hurts or upsets you. Accept that you are not exempt. Shudder at these harsh truths, and teach it anyway.

Advocacy skills have guaranteed that my education was useful and comprehensive. They prevented me from being barred from services I required. They help me be productive and successful. Advocacy is the cornerstone of every fruitful thing I have ever done for my schooling, my career, and my relationships. It keeps me on my feet when the wind is doing its best to knock me over, even and especially when that wind is coming from an unexpected direction.

Before you worry too much about signatures and scissors and the exact method of removing bread from a toaster, remember that A is for advocacy. Start there, and everything else should follow.

“Go Play With Your Friends!”

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“Meagan, what are you doing over here by yourself?”
The daycare worker stood over three-year-old me as I crouched by a wall, well away from the groups of laughing children. I remember holding a toy giraffe (which I was pretending was a pony), and babbling happily to myself, weaving some far-fetched tale or other to while the hours away. I raised my head reluctantly but obediently; I was loath to interrupt my highly-enjoyable game, but I was a relatively respectful child.
She waited.
“Well? What are you doing?”
“Playing.”
“Put that down and go play with your friends.”
It’s astounding, really, the level of clarity this memory still holds for me. My head is full of fuzzy childhood memories, but this one stands out. If I concentrate, I can still feel the cynical amusement her comment had provoked—an amusement that was distinctly unlike what a child ought to feel.
“I don’t have any friends.”
How could she not know this? Was she not paying attention when kids turned their backs as I approached? Did she miss the very public incident when a toy crate was placed directly in my path in the hopes that I’d trip?
“Yes you do.”
“No, I don’t.”
“Well, go make some then.”
As she walked away, my child self felt absolutely nothing but relief: I could get back to my giraffe—ahem, pony—without further annoyances.
What I find remarkable about this memory is not the underlying theme of social isolation and bullying. Bullying had tapered off almost to nothing when I went to grade school, I was extraordinarily lucky, but daycare was somewhat different. I faced relatively little direct confrontation—I was certainly never abused or put in real danger—but social exclusion was at its height. No, what I always dwell upon is how very unaffected I was by all of it. Kids are all supposed to crave a peer group, but for whatever reason my rejected social overtures didn’t faze me. I didn’t try very hard, and once I realized it was basically futile, I retreated to the safety and endless entertainment that could be found inside my own head. I was aware on some level that this made me different, but I simply don’t remember being bothered in any way by it.
I was not a socially starved child, generally speaking. I was forever pestering my elder sister to play with me, enjoyed the company of adults immensely, and had a huge, welcoming extended family to keep me company during gatherings. If I had the opportunity to play one-on-one with accepting kids my own age, I took it quite contentedly.
Despite this, my introversion seemed to be a source of ongoing anxiety for the adults in my life. Daycare workers, teachers, consultants, and all manner of others concerned themselves with my social development, no doubt worried that a disabled child left to her own devices would morph into a stunted mess. Their fears weren’t entirely unfounded, and my isolation did facilitate certain quirks it took me a bit too long to eliminate, but my intelligence, contentment, and overall growth didn’t feel impeded by my apparently-tragic lack of friends. At least, that’s how I tend to view it.
Frequently labeled antisocial and stubborn, I noticed that my personal preferences were considered partially or wholly irrelevant. This is true for many children, I think, especially when they grow up surrounded by people who fear they’ll turn out wrong, somehow. I don’t know that any adult stopped to consider that maybe, just maybe, Meagan was at peace with not having many friends, and that she’d make them when she was ready. I’m not sure anyone recognized that introversion and antisocial behaviour are worlds apart.
As I grew older, I did begin to amass a very small, very selective group of friends. I didn’t always choose adults’ perceptions of ideal candidates—that is, I did not necessarily gravitate toward popular kids. In fact, I tended to avoid them, and they likewise avoided me unless they thought I’d give them the answers to the homework that had just been assigned. (My studiousness was attractive to just about everyone in my classes over the years, meaning everyone wanted to sit next to me inside but scattered at recess time.) The steady friends I did have were a bit like me: introverted, slightly eccentric, and entirely content with being both. Throughout my childhood, all the way up to middle school, the refrain continued: play with your friends. Be more social. Don’t just stand by that wall all the time. Go play with these girls and those guys and that group over there.
Sometimes, the concern, which I know to be benign and not entirely misguided, got a little out of hand. Fellow students were ordered to play with me (please never do this to any child), and didn’t always hide their resentment over it. Others would allow me into their group briefly, but were just as happy as I was to see me go. Probably, if I’d tried harder, been chattier, been more charming, I’d have made progress, but it all came down to the inescapable facts: they didn’t really want me around, and I was in no mood to waste energy trying to persuade them otherwise.
Don’t get me wrong: I nursed my moments of loneliness, especially as a teenager. Sometimes it seemed as though having more friends would be an express line to a better life, within the confines of school, anyway. When I became a bit more popular in middle school and my social group got larger, I welcomed opportunities to experience new people and activities. When I got to university and was totally alone again, I felt hollow and far more desolate than I’d ever felt as an excluded child.
On the whole, however, I don’t believe my personal growth was much improved by the constant commands to be more outgoing. The social butterfly wings don’t suit me, and they never really have. I applaud the efforts of those who cared for me; I know they were aware of the risks inherent in an isolated, sheltered child, and I see the effects of this isolation in other blind people. Some of them can’t shake a pronounced awkwardness, even as an adult, and I’m grateful to have navigated that particular minefield fairly successfully. I owe much of that to the efforts of the adults closest to me, who were just trying to make me into the best person I could be.
These things aside, I believe my intense introversion, so often judged and found wanting, shielded me from so much of the drama and misery that are youth’s trademark. Other kids were worrying endlessly about who was out and who was in, but I was busy reading yet another book. Other children at daycare were fighting over toys while I sat safely in a corner, knowing my giraffe-pony was mine, all mine. My ambivalence toward my peers wasn’t always an asset, and it definitely got me into trouble a time or two, but it also insulated me from a lot of pain and self-doubt I really didn’t need. Childhood and teenage years are difficult for anyone, but I had separate challenges that meant I would have had precious little time to waste on being lonely anyway. I was way too concerned with a mental illness I did not understand and a disability I didn’t always know how to deal with to cry my eyes out over whether the girls on the tarmac would let me skip rope with them.
Today, I’m still an unapologetic introvert, though with far more friends and a much richer social life. I’m no longer content with total exclusion, and I spend way too much time these days agonizing over things I would have thought silly and worthless as a child. I like my life, and I like who I’ve become.
Still, once in awhile I appeal to that three-year-old I once was. I ask her to lend me her shamelessness and her practicality. I ask her to remind me that I can be my own best friend when the need arises, and that what other people think, well, it doesn’t always have to matter.
Don’t worry, introverts. You’re okay.

Life Ain’t Easy (For a Disabled Person’s Sibling)

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If you’ve been fortunate enough to grow up with siblings, you know how much they matter. Whether we are plotting their imminent deaths or singing their praises, they’re always present in our lives and, if you’re lucky like me, poised to pick up the pieces when life shatters us.
People overlook the fact that, while having a disability makes for a tough life, being a disabled person’s sibling comes with its own challenges. Inspired by my own sister, I give you just a few of the many reasons we should all thank our siblings

They often take the back seat: Parents and families tend to lavish a lot of attention on us, whether we appreciate it or not. It’s usually because we need more assistance and support. My parents didn’t have to fight for my sighted sister’s right to an equal education. Still, siblings are so often shunted to the side, even when they could use a little support of their own. The admirable bit is that they rarely complain. It’s just the way it is, and they understand that.

They are irrevocably connected to us: Anyone who knew me back home immediately connected me with my disability, at least initially, and my sister couldn’t escape the association, either. Being the older sibling helped her establish her own identity outside of mine, but she was often asked whether she was “Meagan’s sister,” and quizzed about what it was like to have a blind person in the family. The situation is even worse for siblings of those with more severe disabilities, who rarely evade the harsh light of other people’s scrutiny. We mustn’t forget that they’re people, too, with individual roles beyond “sibling of disabled person.”

They become secondary parents: Blind people can sometimes avoid this, because we tend to be reasonably independent souls. Even so, siblings often take on part of our care, especially when are parents aren’t around. My sister drove me to countless engagements, helped me coordinate outfits, and ensured that I was getting along okay, just generally. She was asked to shoulder more responsibility than any sibling should, and she usually did so without complaint.

They are asked to work harder: while some families are more egalitarian than others, it often happened that my sister ended up with the bulk of the “difficult” chores. While I did the dishes, she went out and picked rocks, or mowed the lawn, or changed the oil on a vehicle. My family’s subtle aversion to tasking me with anything too hard prevented me from learning some concrete skills, and it also meant my sister often got the shaft where household responsibility was concerned. Mostly, she dealt with that dynamic gracefully, only occasionally giving into a (justified) rant or two.

They become fierce defenders: My sister is a nonconfrontational person, but mess with me and you’d better hope you’re not within glaring distance. As we strolled through the mall, being gawked at by strangers, my sister dispensed cheery waves and bright, toothy smiles with relentless determination. She’s shamed more than a few people into looking away guiltily, and she can’t bear to watch me being mistreated. I learned not to tell her about any bullying that went on in my life, lest it enrage her. I don’t need protecting, but it’s still comforting to know that someone will be angry on my behalf when I’ve been treated unfairly.

They grow up too fast: siblings of disabled people learn about sacrifice, hardship, injustice, and inequality very early on. My sister was presented with living proof that life is not often fair; that people sometimes get rare and incurable genetic diseases; and that the world is not kind to anyone with a disability. My sister also had to learn self-sacrifice early and often, sometimes missing out on something she wanted because I needed something else more. She had to settle for less time and attention. She even had to forego certain visual experiences because I’d be left out. These are things she’s forgiven me for, and they are things I still feel guilty about.

If this sounds like your sibling, send them a text, give them a call, or link them to this article. Seriously. Do it. Right now. I’ll wait.