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Nutritious Negativity

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In a culture that prefers disabled people when we’re smiling, I’m what you might call a bad sport. Cheerfulness in the face of a challenge is all very well, and my natural disposition is upbeat, but toxic positivity is an enemy I’ve confidently opposed for most of my life. Good vibes won’t grab a broom for you when your half-full glass is in pieces on the floor.

I’m convinced toxic positivity makes it harder for marginalized people to be honest about their pain, even with each other. Don’t get me started on the unrealistic expectations we place on ourselves when we believe the only worthy disabled person is one who does what nondisabled people do, only better. Writer and cancer survivor Barbara Ehrenreich distilled this well, observing how ‘no negativity, just vibes’ encourages us to “deny reality, submit cheerfully to misfortune, and blame only ourselves for our fate.”

Pay attention and you’ll see how much the world rewards a cheerful, reality-denying, optimistic disabled person. It celebrates them when they manage what is presumed impossible. It is satisfied when they gently, bravely accept a life that is less-than. It rewards them a whole lot less when they point out problems, admit how much their circumstances suck, or ask nondisabled people to adapt.

More and more, however, I am troubled by what happens when despair takes the place of plucky heroism. As a somewhat cynical person, I find it tempting to dwell on the ways I’ve been mistreated, overlooked, misunderstood and under-resourced. Yet, most of my proudest and bravest moments happened because I stopped dwelling, focused on what was in my control, and got shit done. If I fixated on what I wasn’t taught as a kid, I’d never have learned anything new as an adult. If I focused on what wasn’t done for me, wasn’t available to me, was denied me, I’d never have been able to build a life worth living. I am where I am in part because I knew when to wrench myself out of the disappointing past and dream of a future worth fighting for.

I’ve seen too much unnecessary and unjust suffering to believe the disability prosperity gospel, a bootstraps doctrine that refuses to hold systems to account. But I’d be lying if I didn’t admit our attitudes can sometimes determine what is possible for us in a flawed world. Determination can fill a lot of gaps left by inadequate education, poor skills training, and unenforceable accessibility legislation. I’ve scaled quite a few walls by working hard and refusing to go away. I couldn’t have done any of that if I didn’t believe on some level that the effort was worth the hardship.

I submit that nutritious negativity can hold us as we tread the murky water between frozen smiles and slumped shoulders. Nutritious negativity is a no-nonsense motherly type who sees through our pretenses and has no patience for them. She makes room for complaint. She welcomes sincere lament. She is not afraid of the anger that has fuelled justice-seekers since the beginning. She teaches us to listen, tell the truth as best we can, and practice presence as we engage with the suffering of others. Nutritious negativity doesn’t ask us to deny what is true, nor does she tolerate empty despair. While she may ask you to stop dwelling, she will grieve alongside you and never demand a smile.

I don’t want to live in a world where my genetic disorder is somehow my fault, where my chronic pain is attributed to a negative attitude, where my mental health would magically improve if I pretended harder. But I do want to live in a world where imagination and resilience will come to my rescue when imperfect systems let me down, because they always will.

We need to complain. We need to point to our half-full glasses, in pieces on the floor, and say, “This is not okay!” Only when we make space for “This is not okay,” can we progress to “This is how we make it more okay.” Dismissing those brave enough to admit more work is needed won’t change reality for disabled people; it only makes reality rosier for nondisabled people who can afford to ignore it. As is often said, privilege is being able to stay neutral because your life isn’t affected either way.

At the same time, we need wild hope and irrational optimism, because sometimes that’s all we’ve got. Plugging away at the impossible is not especially awe-inspiring, day to day, but I have seen its power, over and over again.

Some disabled people are singing songs of triumph, glowing with pride at how far we’ve come. Others are singing protest songs, overwhelmed by all the work that is left to do. Many are humming quietly, content enough but wondering, a little guiltily perhaps, if this is all there is. Let’s learn to listen to every voice in this splendidly diverse chorus. We need them all.

Sunrises, Sunsets, and Other People’s Sadness

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The sun is a bit of a show-off. Have you noticed? In its rising and setting, it makes such a spectacle of itself that every camera-owning human has tried to capture it at least once. Artists try to recreate it. Composers try to evoke it. Writers try to describe it. Whether greeting or leaving us, the sun offers magic that never stops impressing the eyes of the world

As someone with almost no vision, I mostly don’t get it. I’ve heard the songs and read the purple prose, but this singular beauty remains largely theoretical. Blind people who have never had vision know sunsets and sunrises are breathtaking in the same way they know that black goes with everything, or that fair complexions and bright yellow don’t mix. That is to say, they know it because they’ve been told often enough to make the knowledge stick, but they probably can’t explain why.

As a kid, I was able to see quite a few sunrises and sunsets with my limited vision, which has degenerated from ‘barely there’ to ‘even less there’ over the past 20 years. The contrast was interesting, I remember, and the colours were nice. In high school English, I accidentally depressed my entire class by sharing a personal reflection about sunrises and the fact that I’d one day be too blind to distinguish purple from gold (sorry, folks, I didn’t know we’d have to read them out loud). But up until recently, I had no idea what all the fuss was about.

Then, while headed north by car during a spectacular prairie sunset, something made me look up and out the window, which I hardly ever bother to do. I caught a view so stunning I stopped breathing for a moment. Don’t ask me to explain it, because it’s beyond me. Somehow, the contrast was just right, and I could actually see the layers of cloud and sun, dark cushions supporting a long, slender bar of yellow-gold. The word ‘holy’ was coined for just this sort of experience, set apart and perfect. It was every bit as enchanting as I’d heard, and I have never seen anything that way since. At the rate my vision is deteriorating, I never will again.

Whenever I mention this revelation to sighted people, they assume I’m about to share deep grief and sadness. They expect me to behave as someone cheated or deprived. Since I am very frustrating, I do none of those things. I express overwhelming gratitude for having experienced this unexpected gift, and then go back to my regular routine: reading, singing to myself, and ranting about thrice-cursed scooters blocking the f***ing sidewalks. Knock it off, would you please?

I’ve written about my vision loss journey in posts like this one, but borrowed grief weighs on me more than anything I’m feeling for myself. Many of those who have loved me best and longest can’t help but feel that deep sadness on my behalf. Unlike me, they know what I’m missing, and it hurts them to realize I’ll never enjoy what is so freely available to them. Loving me as they do, they can’t wrap their minds around my ability to hold that once-in-a-lifetime sunset loosely, as a cherished gift to which I have no right. Try as they might, they can’t adopt my sense of defiant wholeness in the face of a world that thinks I’m lacking crucial human ingredients. My essential sense of enoughness, of abundance, must feel like desperate adaptation to someone who can watch the sun put on a show whenever they want.

“Well,” they might say to themselves, “I suppose she has to live with it somehow.”

I used to fight this borrowed grief with tooth and claw. Convinced as I was that my life was pretty great, thank you very much, I accused my loved ones of trying to wish me into a more acceptable, less upsetting body. I thought they were silently wishing me into a better version of myself, one with normal eyes so I could take this gorgeous world for granted like everyone else.

The marvellous thing about growing up is that your understanding of love becomes much more spacious. You start to welcome nuance and explore the messy middle. You realize, in spite of yourself, that someone can love your whole self, fiercely and unwaveringly, while feeling a little wistful about what might have been. My husband, for example, thinks altogether too highly of me, but he still gets the blues (pun intended) when he thinks about the colour perception I will never get back. Yes, he knows I’m an independent, joyful, fully actualized human, and he sometimes wishes I could see the things he sees. There is no need for him to drop one perspective to authentically inhabit the other. Both/and is where I find myself more and more these days. Either/or, well, I seem to have outgrown it.

I am making room for messy-middle feelings about love and loss and our faithful star-friend in the sky. And I am also making room for your messy-middle feelings about these things, even when I don’t understand them and can’t own them. All I can do is honour your borrowed grief, and hold very loosely to the gifts this world is giving. They are enough for me, beloveds. I promise.

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.

The Privilege of Showing Up

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Every time I look at my phone these days, the Zoom hate is everywhere. People can’t wait to get back to “real” life, where almost everything of consequence happens in person. My postsecondary student friends are daydreaming about returning to campus in the fall, all of my colleagues seem more than ready to have meetings around the boardroom table again, and my family is already planning crowded social events once everyone is vaccinated.

As for me, I miss the energy of in-person gatherings, a little, but I can’t deny that this “fake” life people can’t abandon quickly enough has been pretty kind to me, accustomed as I am to a world where showing up in person is perceived as essential. Demonstrating competence, commitment and success demands your physical presence, whether or not said presence is logistically required. That hasn’t worked out so well for me.

You see, I am not known for my in-person attendance record outside of work contexts. Chronic pain sufferers often struggle with uneven energy reserves and mobility, and my subpar travel skills as a blind person don’t help. I was the kid who missed a staggering amount of school, forever behind and fighting to catch up. In university, when my pain levels were at their highest, I once missed two thirds of my classes in a single semester. Rarely did I commit myself to non-essential in-person events of any kind, because I hated the shame of last-minute cancellations. Just because people were mostly gracious didn’t mean they weren’t quietly categorizing me as flaky.

In the past year, my schedule has looked quite different. Social events every other week. Book clubs. Committee meetings. Resource group chats. Live readings and author interviews. I’m signing up to everything, planning potential presentations, even doing a little on-the-fly consulting work. I hardly recognize myself.

The difference, of course, is that everything is virtual now. I can attend a book club in Minnesota, watch a live performance in New York City, participate in a Q & A in Colorado. Signing up to serve on committees and resource groups, in and outside work, requires no more of me than an internet connection and my willingness to be useful. No taxis, no transit, no anxiety about finding the venue or locating a seat. No getting lost or looking foolish. Just logging in like everyone else.

If I’m in horrible pain and can’t travel? No problem. I medicate as needed, grit my teeth, and get through the meeting as well as I can. No one needs to know I’m attending from my bed. If my camera stays off, they don’t even need to know I’m blind, necessarily. (The way I am treated before versus after people find out is a story for a whole other post, by the way.)

Until the world opened up for me in terms of accessibility, I assumed I was especially disengaged. I figured I was just not a group person. Not a committee person. Not a ‘show up to everything’ person. A home body, you might say, who didn’t gain energy from interacting with others outside of small, intimate groups.

Sure, I’m still an introvert who is choosy about what she signs up for. I only have so many spoons, and I want to use them wisely. But now I have a better sense of what I’m capable of as a professional and social contributor, because so many of the barriers are temporarily removed. It turns out that I like showing up and getting things done as much as the next person; there was just a great deal in my way. The same might be true for someone who finds in-person activities easy but who doesn’t have a stable internet connection, or gets fatigued by screens, etc.

This is not an original take, I know, but consider this post my plea for a thoughtful, accessible approach to returning to “real” life. It’s past time we adjusted our ideas about what constitutes competence, commitment and success, because not everyone can or should show up in the same ways, and it’s ableist as hell to assume a physically present person is more invested and more worthy than someone who can’t attend.

Lots of people have hated every second of this lockdown lifestyle. Some of us have never felt less locked down. Let’s think seriously about why that is, and what we can do about it.

Perhaps we should start a committee? I’ll send out some Zoom invitations. I do that now.

Notes on Hungry Contentment

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Dr. Lauren Winner, a bookworm so devoted she once gave up reading for Lent because it was the most meaningful sacrifice she could imagine, filled her living spaces with books. In one of her memoirs, Girl Meets God, she describes a small New York City apartment crammed to bursting. Cook books and fiction and poetry in the kitchen. History, theology and ethics books in her bedroom. More history in the den. By the couch, civil rights books. In the hallway, memoirs, essays, and yet more history. In every available space, she lived alongside encyclopedias, sociology books, religious commentaries, reference books, writings on feminist theory, books about “Buddhist communities in California.”

Everywhere, books.

For most blind bookworms, such abundance is unimaginable. Many of us own a library’s worth of eBooks and audio books, now that they are more affordable, but to pack one’s house with Braille books wouldn’t make much sense. Braille books are bulky and multi-volumed. They take up a lot of space on bookshelves. They are expensive and hard to come by, unless you own your own $5,000 embosser and don’t mind subjecting your neighbours to its mighty industrial brrrrr.

When it comes to textbooks, we tend to put up with the bulk and expense, though digital braille is removing this need as well. Otherwise, I know very few blind book lovers who can justify owning more than a dozen or so books in braille. (I currently own zero braille books, because space.) Where would you put them? How would you pay for them?

Being rather ruthless in my practicality, I’ve never let this bother me much. I can still read virtually anything I want. I just have to settle for a digital version. The trade-off is more than worth it, when you consider that just a few short years ago, I had to ration my books so I wouldn’t run out of braille and audio material.

But I cannot deny that I miss books. I miss the physicality of turning pages, smelling that papery scent, hearing coils crackle and binding groan. I miss holding a new book in my hands, or at least the first volume of said book, being reassured by its heft. I miss reading without headphones, without speakers, without an internet connection or a mobile device or a braille display. I miss cradling a book in my lap and knowing that I am only here to read. This bundle of paper cannot tweet at me or call me. There is no do not disturb function to remember to use, because a book does only one thing, and it does it very well. There are no batteries to charge, no Bluetooth connections to rely on, just me and words and pages turning, like a journey I can feel under my fingers.

Then there are the pleasures I miss without ever having them in the first place. How much would I love to scribble in the margins, or highlight a favourite passage? Wouldn’t it be great to lend my friends my books, made unique by my marginalia, and to receive theirs in return? Wouldn’t it be fun to meander through a bookstore, flipping through unfamiliar pages in search of treasure? What would it be like to enjoy illustrations, to literally judge a book by its cover? To gaze at author photos and guess what sort of person has been captured there? To have more than an academic opinion about book design, one informed by personal taste as well as the second-hand knowledge I’ve memorized from other people’s ideas?

Today, I am seized by an irrational, unpragmatic longing. I want to surround myself with bookshelves and book stacks and precarious book towers. Filling my kitchen and bedside table and living room and hallway with the hundreds of books I’ve fallen in love with seems like heaven. I’m enchanted by the extravagance of it, the lack of efficiency, the defiant wastefulness of being buried in books. Oh, the slow-paced joy of reading my way along a shelf to choose a book, instead of searching a hard drive or Googling for it. What a privilege to sit with poetry and read it line by line, down an actual page, without hitting a scroll button. ‘Tis so sweet to turn pages, loudly, and feel the book thinning ahead of me as I progress. I want to rush to find the next volume, find it quickly so I don’t tumble out of the story.

Right now, facing a quiet Christmas Eve with few distractions, I am passionately grateful for digital books, and broken up by a desire for a bundle of paper. I bless my well-organized digital collection for its portability, and I curse my clunky braille display for pretending to be something it isn’t.

I acknowledge that digital reading makes more sense, even as I acknowledge that, for me, it is by no means a lossless format. Each time I depend upon a digital experience to mimic my true preference, I lose a personal, irreplaceable sacredness.

So often, being blind means embracing this push and pull. I am thankful for the technology that brings me closer to equality, and I hunger for the “real thing.” I rely on approximations, simulations, and other people’s view of the world. Without them, I couldn’t function nearly so well.

But there’s this, too: I’m allowed not to like it. I’m allowed to hunger, without denying the richness of a sightless life. We blind humans are complex creatures. We can bless and curse, feel grateful and long for more. My experiences have taught me we are more fulfilled when we permit ourselves to do both.

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.

Guest Post by Laura Eberly: A Capital B in My Bonnet

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Accessibility enthusiast Laura Eberly, author of this wildly popular post about using screen readers as a sighted person, is back with new research to share. She started with a simple question: Should braille be capitalized? In typical Laura fashion, she found the ultimate rabbit hole. She dug through archives, consulted experts, and read all about the controversial history of blind people reading, so you don’t have to. Now, she’s presenting the best and weirdest of her findings to us.

I was on a mission. Wrong was being done, and duty was calling me, just like in this comic:

Voice from outside the room: Are you coming to bed? Person on computer: I can't. This is important. Voice: What? Person on computer: Someone is WRONG on the Internet.

Photo source: xkcd.com

You see, I was eager to find the right way to handle the capitalization of braille — the writing system, not the person — and I was pretty much ready to shout to the world that I needed answers. Why did I, as a sighted person, care so much? Well, I’ve been working in accessibility testing for years, and I grew to see things as neatly categorized:  pass/fail, bug/feature, process /chaos. But capitalization of the word braille always stuck out to me as being inconclusive, a grey area, defying categorization. Over time, as my auto-correction software kept changing the capitalization of my writing, it grew from a minor point of confusion into a big, glaring disruption whenever I saw it in print.

The Braille Authority of North America (BANA)’s position statement from 2006 said I should use lower case, but some of my friends and colleagues, actual braille users from around the world, often preferred an uppercase B. If I asked them about it, they’d usually say that they were taught to do it that way and didn’t care to change it. But what good was a seemingly official standard if braille users weren’t using it? What logic was behind braille teachers’ decisions? What was going on?

I’d long been touting the BANA statement’s lowercase recommendation, which recommends lowercase b. BANA’s intention was to make braille an eponym like ‘sandwich’, a word that used to be named after a person but became a standard part of the English language. However, I’ve also seen the argument that writing braille with a capital B is a sign of respect for its inventor, and prominent organizations like the National Federation of the Blind use upper case. I felt it was time for me to consult some experts!

I reached out to a Teacher of the Visually Impaired, Dr. Ting Siu, who recommended I talk to Dr. FM D’Andrea, one of the authors of the BANA statement. She generously consulted the extensive collection of journals on her shelf, finding lowercase b usage dating back to 1973.

Dr. D’Andrea also referred me to Mike Hudson, the museum director at the American Printing House for the Blind. He helpfully sent me reports from administrators of schools for children who are blind from around the US dating back to 1834. To my frustration, the older reports only referenced “embossed books,” (which used raised print letters rather than dots), and included horrifying language like “… whose zeal in the cause of the Blind entitles him to the gratitude of this unfortunate class of beings.” I was thoroughly shocked and disgusted by encountering such a view of disability and troubled even more that this was written by the adults trusted to run these schools. I had to move on from these sources.

I soon discovered capitalization was just one of many disagreements surrounding writing systems for the blind community. In the US, around the 1800s, there was a decades-long battle over different forms of tactile writing, including braille and New York Point, a name that is always capitalized, by the way. The stakes of this debate grew higher when the government of the state of New York wanted to standardize the writing system taught in schools and used for printing books. Emotions boiled over during the extremely heated 1909 hearings of the New York board of education, where “protests were so violent that a second hearing was held.”  For the hearings, Helen Keller wrote a letter arguing against New York Point, writing braille with a lowercase b while she was at it. The fact that New York Point books were almost never printed with capitalization was part of what led to its demise at that hearing. This intrigued me and guided me further down into a research rabbit hole.

Whenever braille history is discussed, like in this excellent podcast episode called “The Universal Page” it often references “The War of the Dots,” a chapter in a collection called As I Saw It by Robert B. Irwin, a blind educator and supervisor who held a master’s degree from Harvard. I dug deep into the internet archives to find the original book so I could scour it for clues about capitalization. I read about Miss L. Pearl Howard and Mrs. Elwyn H. Fowler, representatives of the Uniform Type Committee from 1911, who travelled to 36 states collecting data to determine which writing system was better. They brought in braille and New York Point readers, timing them for efficiency and accuracy as they read a sample set of dots. They used nonsense dots written in the style of each system to avoid skewing the results with readers’ existing knowledge. I was so pleased to have found some process-loving kindred spirits from over 100 years ago.

However, after a quick trip to Nova Scotia, they discovered that the British braille used there was superior to both American systems for reading speed and comprehension. They immediately ended the study after this discovery. (Fantastic!) But their conclusion? Create yet another American system, called the Standard Dot, to compete with British braille. (Womp womp.)

Thankfully, by the mid-1920s, pushback from braille users stopped the Standard Dot and other schemes. A memorable example was a quote from an unnamed conference attendee who reportedly burst out: “If anyone invents a new system of printing for the blind, shoot him on the spot.” I was struck by the realization that I, too, was a sighted person arguing about braille when I had no real personal stake. Reasoning that other people might benefit from my findings, though, I continued my research.

At last, I turned to the origin of this intriguing saga, Louis Braille himself. He was expected to read using a system of raised letters that were invented with the thought that both blind and sighted people could read the same page. He mastered this despite raised lettering being hard to manufacture and harder still to make out by touch. We all know he went on to invent braille by simplifying night writing, but he didn’t name it after himself. In his 1829 book, Procedure for Writing Words, Music, and Plainsong in Dots, he simply called the system dotted writing (which the pedant in me just couldn’t help but notice was completely lower case). Tragically, his original writing and his school’s library were burned by the head of his school in an attempt to suppress its use. This is why one of Braille’s only surviving writings was written in raised letters, not braille, even though it laid out his thoughts about how braille should be written. For me, this loss was devastating to read about, and more devastating, I’m sure, to blind readers who will never experience most of his work.

I still wanted to see the earliest example, in print, of when Louis Braille’s writing system officially became named after him. In part, it was to see when he received long overdue respect, and in part, it was because I wanted to see how it was capitalized. I still couldn’t let that bit go. Late one night, while reading more of “The War of the Dots,” I came upon one answer to my original question about capitalization. In the 1932 Treaty of London, British and American braille code representatives agreed that “Capitalization was made optional with the publisher.” In this quiet moment, with me totally unsuspecting, history had spoken. There is no right way to capitalize braille. Uncertainty and ambiguity are baked into the process, and indeed, into life. Braille, like many systems, is a living one, that adapts over time and belongs to those who use it.

I never did find the first reference that changed the name from dotted writing to braille, but I did get close with a reference to a French pamphlet from 1880 that does not have its content online. I don’t know if the capital B in the title refers to the person or the writing system.

I now encourage capitalization of the word braille as a personal choice. I still use the BANA style in official writing for consistency’s sake. Really, though, I’m just like everyone else. I was taught to write it this way and I don’t care to change it. Even though this leaves a grey area, in my heart, I’m satisfied.

Special thanks to the folks I’ve mentioned who helped me on this post and of course, my wonderful editor, Meagan.

Here’s one more fact that didn’t make it into this writing: In 1952, Louis Braille was finally recognized by the French Government and his body was exhumed and reburied in the Pantheon in Paris, with other French national heroes. However, the Mayor of his home town insisted on having Braille’s hands removed and buried in the village cemetery. It seems that disagreements about Braille may never end.

Eat, Pray, Panic: Dubious Advice for Uncertain Times

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Most people alive today can’t remember a crisis like COVID-19. But as I fumble my way through this strange new way of life, I find myself leaning heavily on lessons I learned ten years ago, during my first brush with life-or-death crisis. Maybe it’ll be helpful for you, too.

I was home alone on summer vacation, lounging in my sloppiest house clothes, when two men, professional thieves judging by the efficient way they ransacked my home, showed up in broad daylight to ruin my day. They kicked in our patio door, tracked mud all over the carpets, and convinced my sheltered teenaged self that I was a minute or two from death or, perhaps, something worse. Like the tough, brave gal everyone knows me to be, I cowered on my bedroom floor and hyperventilated a bunch.

It was fine in the end, other than the afore-mentioned mud-tracking and the disappearance of some of our possessions. No one got hurt, and I would go on to spend many more lazy afternoons in that house, safe and sound.

In the moment, however, it felt every bit the traumatic event that it was. For years afterward, I’d have bouts of irrational panic so strong that I kept many a friend and partner on the phone with me for hours until I had the guts to fall asleep.

What stands out to me now, far more than the horror of that experience, was the way we handled it as a family. Everyone came over—grandparents, aunts and uncles, cousins, the whole herd—and there were tons of hugs. We cried. We complained about the mud. We had a pizza party, because of course we did, and chatted excitedly about the family reunions and music festivals we would be attending later that week. I sent upbeat messages to all my friends—“I’m lucky to be alive but it’s all good, lol”—and absorbed their love and relief. I pulled out the gallows humour, and everyone let me do what I needed to do to keep it together.

We acknowledged the crisis, we made space for our terror, and we carried on. In my entirely inexpert opinion, there’s a lot I, and perhaps some of you, can take from that into the present moment, as we continue to deal with a much larger, more devastating situation.

Desperate Times Call for Desperate Feelings

While it’s vital that we keep cool heads in the face of hysteria, we need to make room for all that fear and bad feeling. Sometimes you need to have that good cry, or that venting session, or that long, dark night of the soul to be okay again.

I’m a pragmatic person who shrinks from drama, but I’ve sent a few melodramatic texts and made a couple of tearful phone calls over the last few weeks. It was good and cleansing and 10/10 would recommend.

This is not a time for us to police our own or others’ grief at the loss of normalcy, sadness at cancelled events, or fear for the fate of sick loved ones. These feelings are new, and the coping mechanisms might also be new. I’ve found myself praying after years of vague agnosticism, and I’ve never found hymns more encouraging than I do right now, even though I have no idea to whom I’m singing. And boy does the gallows humour come in handy these days.

Cry your tears, pray your prayers to whoever, and keep on truckin’.

Life is not Cancelled

Lots and lots of things aren’t happening right now, or have moved to digital spaces that can’t provide the same experience and present accessibility challenges for many disabled people. I am writing this from a place of extraordinary privilege, as I still have a job at the moment, but I am feeling the restless dissatisfaction of being cooped up at home, lacking my routines and suffering declining mental health as a result. Nothing feels right, and we’re far from done with this distressing new normal.

That said, I find it empowering as all heck to hang on to as many things as I can in the face of a crisis. I keep my work schedule as regular as I can, even though I’m working from home and the internal pressure to work extra hours is mounting. I’m carving out time to enjoy my hobbies and keep up with life admin as much as possible, given COVID constraints. I’m taking shelter in the things that haven’t changed, and still writing blog posts, for better or worse.

Some days I don’t have the wherewithal to pretend all is business as usual. Most days, in fact. But I leave the door open to the idea that life can and does trundle along much as before. Disappearing into a comforting, everyday task, even for a few minutes, is more restorative than I ever imagined. Everything may be on fire, but the kitchen still needs cleaning.

Crises are Special Occasions

It’s easy to forget this, especially for those of us whose lines of work involve interactions with a terrified public, but it’s not selfish or unseemly to prioritize pleasure. I, along with many others, am intimately acquainted with the pain and anxiety of strangers, and it is my duty, professionally and personally, to offer aid where I can, and compassion where I can’t.

Nevertheless, crises are special occasions, so I’m using the high-end soap. I’m wearing the outfits that make me feel competent and in control (except when I’m wearing my bunny onesie, obvs). I’m indulging in bubble baths and moisturizing, like some kind of grownup. I’m doing all the hackneyed self-care rituals that aren’t productive but are, in their way, the glue that keeps me in one piece.

So knock yourself out. Play the frivolous video game. Read novels all day long. Order the greasy pizza, and stuff your face with abandon. Bake those cookies. Make a mess. Create fancy, over-the-top cocktails with whatever’s in your house. Drink the good coffee. Let yourself enjoy things, tiny as they may be.

Yes, we need to take this situation seriously. That seriousness is saving lives. But sackcloth, ashes and self-denial aren’t helpful, truly.

Be Nicer Than Necessary

Look, 99% of us are doing our best out here, okay?

You’re scared, but so is the person you just snapped at for standing too close to you. You’re stressed, but so is the cashier you just yelled at because the store is out of toilet paper again. You’re tired, but so is the nurse who hasn’t slept in heaven knows how long. You’re frustrated, but so is the disabled person who needs help with groceries, or transportation, or access issues. You really need a break, but so does the communications professional, the call centre operator, the public official, the politician, the teacher, the employer whom you feel isn’t doing enough.

Be kind, because the smallest of gestures will stick more firmly than the criticism, the anger, the pointing fingers and blame games. Goodwill is thin on the ground these days. Be part of the solution.

Settle in for the Long Haul

This is not going to be over in two weeks. Like most significant crises, the impact will linger long after the life-or-death scenario has run its course. It took me years to be totally comfortable in my parents’ house after that break-in a decade ago, and it will take us months and even years to work out all the ways this pandemic has touched and altered us. Some of us may not make it through at all, and that harsh reality will not soften any time soon.

So, get as comfortable as you can, and assume that this is a marathon, not a sprint. Try to incorporate healthier habits into your lifestyle, so that you can take at least one positive thing away from these terrible circumstances. Prepare to support those around you as we brace for the longer-term effects of depleted social safety nets, overburdened health care systems, and economic instability. Think about who might need you, and what you can do for them. While you’re doing that, don’t forget to consider how this is likely to affect you, and accept the fact that you’ll need to get really good at reaching out for help.

Separator

We’re all in this together, as everyone knows. Acknowledge the gravity of this crisis. Make space for your terror. Eat some pizza. Carry on.

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.

Weightless, Wanted, Worthy

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While reading Martin Pistorius’s powerful book, Ghost Boy, I was struck by a passage in which Martin, experimenting with a body that does not behave predictably, attempts to make breakfast for his partner, Joanna.

I forced the knife downwards, cleaving it to my will as it hit the side of the toast before skittering across the plate and leaving a glistening red slick on the table. I stared at the battered toast before looking at the floor, which was covered in coffee granules and sugar. The butter looked as if a wild animal had chewed it and jam had erupted like a volcano across the table. Euphoria filled me. I’d made toast, coffee was waiting in the cups, and the water had boiled—Joanna was going to have breakfast. I banged a spoon on the table to let her know I was ready, and a smile spread across her face as she walked in. “How nice to have breakfast made for me!” she said.

Some might interpret Joanna’s enthusiasm as pretense. As you read through the book, you quickly discover that while Joanna is fully aware of the many barriers Martin faces, she supports his efforts to try new things, even when they end in an imperfect, sticky mess. Martin and Joanna’s marriage is founded on genuine respect and validation, with no suggestion that she is giving anything up to be with him. Rarely have I seen such a beautifully balanced framework, where limitations are acknowledged but never allowed to overwhelm the entire structure.
Naturally, reading about Martin and Joanna got me thinking about my own relationship. My partner has a disability of his own, but it is invisible, and comes up so rarely I sometimes forget it exists at all. We live much like a couple in which only one party is disabled, and we both had to adjust to the different things we need from each other to grow and be happy.
In addition to needing all the conventional things, like love and companionship and the space to laugh with someone in the face of life’s trials, I also crave specific validation from my partner—the validation that says, “I acknowledge that you are disabled, but you are no less complete for it.” From day one, even as I walked him through my various barriers and how they might be an issue for him, he treated me like a whole, autonomous person, and nothing less. If I ever feel inadequate or out of place in the context of our life together, it is my own anxiety talking, not his. Again and again over the past few years, I have been caught off guard by the simple, implicit trust this man places in me every day, without thought and without a hint of charity. Strangers on the bus might wonder what I’d do without him, but he frequently asks me what he’d do without me.
What does this look like in practice? Mostly, it’s an intangible thing—more felt than seen, and usually unspoken. I can point to scores of small things that add up to a larger pattern, and that’s how I can best explain the dynamic.
For example, he asks my opinion on things, with the assumption that of course I’ll have one, and of course it’s as valid as anyone else’s. He doesn’t bombard me with questions about how “blind people” feel about X Y or Z. No, he asks about the best way to install a showerhead, or which ingredients would enhance a new recipe, or what political news of the week is most relevant. Far from assuming I mustn’t be knowledgeable about anything outside the realm of my disabilities and personal interests, he assumes that I am likely to know a little about a lot, and if I’m not sure, I’ll be straightforward about that. I don’t always have opinions or suggestions, but it is so novel and so satisfying to be asked as an equal—as someone who knows things and whose judgment can be trusted. It shouldn’t be so remarkable, but I think most disabled adults would agree that unless the topic is disability-related, our voices are often overlooked.
Like Joanna, my partner doesn’t expect perfection from me, but does expect me to experiment, and won’t ever shame me for the results. He would rather I demolish the kitchen cooking breakfast than have me avoid cooking altogether in case something goes wrong. It’s not that he humours me or enjoys watching me struggle. He simply expects me, as his partner, to contribute where I can and shed my irrational insistence on perfection. If I get hopelessly lost while attempting to conquer my travel demons, he’ll still be sincerely proud that I was brave enough to try, without resorting to empty praise or minimizing my mistakes.
As I’ve noted several times on this blog, living well with disability requires a great deal of self-confidence—or plenty of skill at faking it until you make it—because that confidence won’t come easily from outside yourself. If you don’t have faith in your abilities, you may struggle to find someone else who does. The less you feel you have a right to your place in the world, the less welcoming the world seems to be. While I’ve cultivated my own strong sense of self-respect, I’ve discovered it’s far more bracing when my partner reflects it back at me. I am fortunate indeed to make my home with someone whose faith in me exceeds my own, never hesitating to remind me I am whole.
I’ll return to Martin’s words, because he put it so beautifully: “I’ve lived my whole life as a burden. She makes me feel weightless.”
I, too, have lived my whole life worrying that I am too much like unwanted luggage. But he, together with so many others, makes me feel weightless, and wanted, and worthy.
From where I’m standing, there is no greater love than that.