misconceptions and Myths

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.

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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.

Battling for My Castle

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I’m not a home body, per se, but I do enjoy being home. My home is the one place where I am in my element. I know where everything is, I’m familiar with the obstacles, and nothing dangerous is likely to trip me up. A blind person’s home is often the lone setting in an ever-changing world over which they have any control. They likely don’t need a mobility aid to move around it with ease. They can feel safe, navigate efficiently, and enjoy a space that is adapted for their needs, instead of moulding to everyone else’s. In our homes, generally speaking, we are at liberty to be completely ourselves, with as much independence as possible.
It’s good to trip and run into things sometimes, to learn to orient in unpredictable environments, because the world won’t always be ideally set up in a way that’s safe and simple for blind and other disabled people. Hell, my parents were advised by someone from the Canadian national Institute for the Blind that they should routinely rearrange the furniture without warning me, just to keep me on my toes. They didn’t heed the advice, thank goodness, and only rearranged the furniture when they fancied a change. Like me, they believed it was important that disabled people have one home base where they can put those tools away and rest.
But the blind person’s home as sanctuary can only exist if housemates, partners and/or family members agree. And it can only work if the blind person in question feels they deserve such a home, or at the very least, a smaller space within their home that works well for them.
I didn’t consider this controversial. An alarming social media experience proved me wrong. As it turns out, plenty of disabled people don’t believe either of these things. They don’t think household members have any obligation to a disabled occupant and, more bewildering still, they seemed to think the very concept of being accommodated in one’s own home is unreasonable, untenable, even greedy.
Yes, many of the very people who insist coffee shops, grocery stores, schools, workplaces, and all manner of public spaces be accessible and accommodating don’t think that applies to their own families. Their own spouses. Their own parents and siblings and roommates.
How do I know this? I discovered it the hard way, by posting what I thought was an innocent question on social media, and being totally flabbergasted by the results – so much so I deleted the thread within the hour, convinced no good could come of it.
In the thread, I asked for suggestions to help my now-husband get better about keeping our home safe and blind-friendly for me. Nothing draconian. I wasn’t asking that he label every object in the house, or memorize complex organizational systems. I didn’t require him to arrange everything precisely the way I wanted, or clean to absurd levels, or, I don’t know, walk around with a blindfold so he could experience my suffering. Our shared desire was for him to learn how to be more conscious of things like open cupboard doors, pushed-out chairs and other hazards that are hard for me to anticipate and incredibly painful when bumped at a good clip.
I don’t gallop around my apartment, but I like to walk at a brisk pace, as anyone might in their own houses, without fear of stepping on an expensive tablet or sustaining mild to moderate injury. Piles of laundry on the floor? No big. Cluttered counters? Whatever, I’ll deal. Smashing into a protruding closet door or banging my hip on an open drawer? No thanks. I got so sick of toppling half-full water glasses discarded in precarious places that I began dreading the walk through my own kitchen. I wanted to stop bashing my toes and banging my head, and my partner was tired of watching me get hurt. He felt terrible, he couldn’t understand why he was finding it so hard to accommodate such a simple request, and he thought I might get some good feedback online.
Here is a paraphrased composite of what I got back. Lots of people were lovely and helpful, but those comments aren’t the ones I want to highlight today.

  • “You think it’s hard now? Try having animals and kids around.” (I have neither, so how is this relevant, exactly?)
  • “Are you sure he’s not doing this on purpose? Sounds like domestic violence to me.” (Huh?)
  • “Your expectations are way out of whack here. It’s his home too.” (Right, but I’m getting hurt. Regularly. In my own house. And he wants that to stop as much as I do, so…)
  • “This is normal. You just have to get used to it. I walk slowly and hold my hands out and stuff.” (In your own damn house? All the time? Do you use your cane as well?)
  • “You can’t micromanage a housemate and you shouldn’t try. That’s really controlling.” (But he’s my fiancé. And he wants to be better. He hits his head on his own open doors, you know. No one is having fun here.)
  • “Wow, he sounds like an idiot. Who can’t remember to close a cupboard?” (How understanding of you.)
  • “This is just the reality of blindness. You just deal. I do.” (Good for you?)

Thinly veiled judgment followed well-meaning but mystifying concern, with accusations of controlling behaviour bringing up the rear. All that, and very few good suggestions buried in the mix. I’d been prepared for people to ask why my partner was having such difficulty. I was even ready for the odd comment suggesting it was my own fault, because there ain’t no victim-blaming party like a disability victim-blaming party. I must admit, however, that I had not imagined I’d encounter such a large and diverse group of people for whom no one had ever, it seemed, made a real effort to keep their home environments safe and reasonably blind-friendly.
I’ve never lived in a perfect space myself, and I’ve had a few housemates who made no effort at all, but that didn’t stop me from aspiring to something better one day. That didn’t convince me I’d better give up altogether and shuffle along in a space designed for everyone’s comfort but mine. Did that make me especially entitled? Suddenly I wasn’t sure.
I’ve put off writing about this for something like a year, not because I didn’t have a lot to say, but because I was so confused and afraid to prod the hornet’s nest once again. I was second-guessing myself. Was this a wake-up call that I was being too demanding? Perhaps this philosophy comes from somewhere legitimate and understandable. If someone took the time to explain it to me, I might head some way toward comprehending it. Maybe all this cynicism stems from too many demoralizing conversations with kids and spouses and parents and siblings who just didn’t get it, who wouldn’t or couldn’t make changes, who didn’t see the point. It could well be I am unusually privileged to live with a partner who wants me to be as comfortable in my own house as he is, even if it means making a few adjustments.
But I don’t think I will ever agree that strangers owe me more than those with whom I share my home. I won’t claim to know what these commenters were thinking, but from where I’m standing, it looked like they’d persuaded themselves that it’s better to call someone controlling and unrealistic than to admit they might deserve more – that more might be possible if they ask for what they need, and do the work to make it happen.
Maybe this perspective isn’t strange to anyone else. Maybe I’m in the minority. But I stand by this: If you think your workplace and your local library and your school and your dentist’s office and your government should accommodate your access needs, but you don’t think this also applies at home, that’s a damn shame. The notion that your boss, your professor, your elected representatives are more obligated to you as a disabled person than your own family is inexpressibly upsetting to me. The very thought that you feel more comfortable advocating for your rights as a citizen or employee or voter than as a spouse or a housemate is heartbreaking. The idea that you’d belittle a fellow disabled person for wanting an accessible home, the same way you want accessible public spaces, makes me sad and angry and deeply frustrated.
So, okay, I’ll concede that practice is useful. Expect the unexpected, and all. I should hone my instinct for caution. I should be ready for anything when I’m out and about. But I have the rest of the world to test me that way–at work, at other people’s houses, out on the street. I don’t need or want that at home. When I come back from a long day of working around other people’s idea of well-designed spaces, after a day of dodging distracted texters and avoiding people’s pushed-out chairs, the last thing I want to do is more of the same. I want to sit back, relax, and know that when I get up for another cup of tea, I’m not going to need a cane or hands-out-shuffle-walk to get there safely.
My home is my castle. It is organized in a way that works for me, without unduly inconveniencing the one who shares it (he has since learned to close doors, and I can’t remember the last time I got hurt around here). My home is my one safe place, my retreat when navigating a world that isn’t designed for me becomes too much. I intend to keep it that way, and for that, I will not apologize.

Who We Are When Life is Good

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How much does society love talking about the impact of adversity on disabled people? The polishing powers of struggle, turning us all into sparkling gems? The motivation that comes from being told we’ll never be good enough, never measure up, never prosper? The myriad obstacles we’ve ‘overcome’ to be the people we are?

As a person with multiple disabilities, I can tell you with confidence that we love it a whole lot.

We love talking about it so much that you’ll rarely hear about anything else. Stories featuring disabled people centre around their troubles and barriers and the Debbie downers who insisted they’d never succeed. Disabled people are forever prompted: Tell us about the haters. The doubters. The people and institutions that stood in your way. Did all that negativity make you work harder? Did it make you stronger? Was it the driving force behind all your ‘inspirational’ achievements? Less often are we asked about positive sources of strength and power.

Societal hunger for tales of marginalized struggle is so voracious that I wonder if, on some deep, dark, shameful level, we quietly enjoy the idea of disabled people having to suffer in order to earn their place in the world. If access comes easily, if an environment is supportive and if barriers aren’t blocking a person’s path, do their accomplishments count?

Maybe not, or at least, not as much. No one wants to hear a story without conflict, so what’s the value of a disabled person’s story if it doesn’t involve plenty of misery?

This romanticism of struggle bled into the way I viewed my life, even as I was living it. I kept waiting for the adversity I faced to make me better, more resilient. Mostly it just made everything worse.

Logic dictated that being a blind person in a visual world would make learning, travel, and daily life more complicated. Of course debilitating chronic pain would make me less dependable, less inclined to pursue great things and explore my creative side. Why wouldn’t mental health issues contribute to my low energy levels and aversion to new challenges? Wouldn’t it be odd if they didn’t?

And yet, because I’d grown up surrounded by triumphant stories of struggle, of people being more successful precisely because they had suffered and come through, I expected that, if anything, my disabilities meant the bar was even higher for me.

The shoulds came thick and fast: my mental ill health should turn me into an unpredictable but admirable genius. My blindness should help me smash barriers to bits with superhuman aptitude. My personal haters and doubters should spur me to work harder, instead of making me feel unwelcome and afraid as they were trying to do.

Now, with the benefit of hindsight, I understand that I thrive best when my health is good and my environment is supportive. At present, I’m surrounded by positive, encouraging people who want me to flourish, and by God I’m flourishing. No longer do I cower at the very thought of a real challenge. Weirder still, I’m a bit of an adrenalin junkie. I crave variety and I need constant, low-grade stress to be content. Give me a new project, a tight timeline and vague instructions, and watch me crush it. If you’d told me all this five years ago, before I’d ever known such support, I’d have laughed in your face. “No no,” I’d say, “I’m more of a ‘scared of my own shadow’ type.”

As far as I can tell, I owe very little to pain and suffering. Adversity has been useful enough in some ways, but I will never claim to do my best work while beset by destructive forces. Shocker of all shockers: Not everyone soars in the middle of a hailstorm, and it’s strange and sad that we ever expected they should.

Perhaps you’re one of those remarkable creatures who functions well under the worst of conditions. Maybe you’re doing great during this pandemic, while most of the world flounders. It’s possible you’re one of those unicorns, disabled or nondisabled, who confronts terrifying situations—bullying, discrimination, six-lane intersections—and comes out of them more badass than ever. (Teach me thy way!)

But I’m not a unicorn. Many, many of my disabled friends are not unicorns, either, and we get down on ourselves when the troubles that are supposed to make us better end up tiring us out instead. Lots of us get bullied, discriminated against or hit by cars in six-lane intersections, and then we go home and cry because it hurts and it sucks and we hope it’s a long time before we have to go through that again. These things may not break us, and we might get a good blog post out of them if we’re lucky, but we sure as hell bend.

Let’s share some new stories — stories that make room for people who get things done in times of crisis, yes, but who also know the value of environments where they are supported and encouraged. I want to amplify stories about disabled people who get the tools they need, the access they deserve, and the inclusive communities they crave, and who accomplish wonderful things as a result.

I’ll start: Once upon a time, there was a disabled gal named Meagan who did okay in the face of adversity, but who wanted more from life than leaping from hurdle to hurdle. After years of being low-key miserable and unable to fulfill her potential, she found the access and support and community she needed. She blossomed. She accomplished some very cool things, which were no less valid because she wasn’t ‘overcoming’ anything more daunting than her own self-doubt at the time. Also, she had very few haters, and that was handy. She lived happily ever after, terrible mobility skills and nasty migraines and inconvenient mood disorder notwithstanding. (My blog, my ending.)

Not exactly riveting, sure. But it’s kind of a nice change, don’t you think?

Stay safe and healthy, folks, and make some space for happy stories.

“You Got a Permit for Those Feelings, Ma’am?”

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When we think about gaslighting, we tend to focus on calculated, premeditated abuse, carried out over time for some nefarious purpose. We rarely think of it as something unconscious and unintentional — something we do to ourselves and each other, in some cases with disturbing frequency. Gaslighters are vindictive, manipulative bullies. Gaslighters aren’t decent, well-intentioned folks in widespread, shared denial. And gaslighters certainly aren’t members of marginalized communities who have learned to second-guess their perspectives. Perish the thought!

I’ve generally thought of gaslighting as something that rarely happens to me, something other people deal with, until a recent moment of public humiliation at the hands of well-intentioned strangers brought me up short.

Two recruiters for some sort of club approached my sighted friend and me, diving straight into their pitch without preamble. My friend grabbed a pamphlet, but I was totally in the dark about what was going on and who these people were. They spent the next few minutes talking about me as though I were an engaging art installation.

“Can she speak?”

“She can speak, right?”

“Our club is for, you know, all individuals.”

“Even she could participate in this, I think!”

“She’s okay, right? She can…”

“I know you’re guiding her today, but we could work something out…”

“And she really can speak?”

During this onslaught, I struggled to get my bearings while one of the strangers held some food item, a bag of chips as it turned out, right under my nose without explanation. I kept interjecting, trying to redirect their attention, to demonstrate my ability to have this conversation for myself, but nothing I said got through to them. Meanwhile, my poor friend stood there, horrified but unable to extricate us from the situation.

Finally, my attack of politeness paralysis lifted: “Excuse me but we really need to go.”

As we power-walked away, my friend swung between apologizing and expressing shock.

“Did that just happen? I am so so sorry! I didn’t know what to do. Did that seriously just happen?”

I assured her there was nothing she could have done differently and thanked her for acknowledging my own shock and embarrassment. We parted ways, and I was preparing to shove this incident into my trusty ‘shit happens’ folder when I realized something at once forgettable and bizarre: I had thanked her for being upset about this. The first articulate thing I’d thought after it happened was, thank God I had a sighted person with me. I was hugely grateful to someone for whom this sort of treatment was an anomaly, not an inevitability, the way it is for me. I was relieved that she’d been there, with her working eyes, to assess my feelings and find them valid.

Why?

This realization crystalized further as I sent a message to a blind friend I knew would understand.

“The sighted friend I was with was more upset than I’ve ever seen her. That gave me permission to be, I guess. I dunno. I’m still shaking.”

There it was, in plain language. Somewhere along the line, I’d become so distrustful of my own perceptions of reality that I needed validation, sighted validation in particular, before I’d let myself react. What was this self-diminishing nonsense, and when had it started?

If I’m being truthful, this subtler form of gaslighting began early, and it came from just about everywhere. Remember those decent folks I mentioned earlier? The ones in widespread denial? I believe I learned this pattern, however unwittingly, from kindly people who couldn’t bear the idea that they could do real damage without even knowing it, who clung stubbornly to the belief that intentions trump results, always.

How many times had I been encouraged to be extra patient, unfailingly gracious? People just don’t know what to do with me. How to talk to me. How to work with me. How to live alongside me

How often had I been reminded, by sighted and blind people alike, not to be too hard on people because they didn’t know any better? They’d never met someone like me before. Not everyone has read my blog. They didn’t mean it. I read the situation wrongly. They meant well. I must have misunderstood.

And how many comments have I heard and read, online and off, asking for sighted validation? Was anyone sighted with you? Did anyone see what happened? Maybe you misheard? Maybe it would help if you could see their faces? Most communication is nonverbal — maybe you’re just not good with social cues? Maybe there was something going on you couldn’t see?

Then there is the gaslighting I have done to myself. Even a sighted person couldn’t have done this, known this, understood this, accomplished this, noticed this, fixed this. I had a sighted person check so I know it’s okay. I need a sighted opinion on this please. I wish I had a pair of eyes to verify this.

Sure, sometimes I misunderstand things, miss out on context, because my eyes don’t work. Sometimes I need someone’s vision: Did this document print okay? Is this picture what I think it is? What’s on my screen right now? Did she look upset or was she smiling when she said that?

But when I get to a place where either a sighted person was there to witness it or it didn’t happen—either a sighted person thinks what happened to me is discrimination or it doesn’t count—something is very, very wrong. And I doubt I’m the only one doing this self-defeating dance.

I should be leaning on all my friends, sighted and blind, for everyday validation, the kind many of us crave when we’ve been through something difficult. I am comforted when people join me in my anger and acknowledge my shame. What my sighted friend did for me that day, standing beside me, getting offended right along with me, was good and kind and helpful.

The wrongness lay in my intense relief that her sight, more than any of my own senses, gave me permission to feel my feelings; that I worried about confiding in too many other friends for fear they’d poke holes and imply I shouldn’t be upset; that some internet commentator would materialize to tell me I don’t get to be offended; that any of this would influence me so easily.

The fact remains that I was there. It happened to me, not a friend or coworker or random internet troll. I should be able to own my reaction and sit with it a while without guilt or undue doubt. I should be able to confide in some friends, take in their support, ignore any advice I didn’t ask for, and move the hell on with my life.

The good news is that I believe I’ve learned my lesson. This incident should have been an annoying blip, not a miniature crisis of faith in my judgment. Speaking of faith, it’s time I placed more of it in my perception, less of it in hidden, well-intentioned gaslighting, and mastered the art of sitting still with what hurts me without picking apart that hurt or trying to explain it all away.

In case my faith crisis is also your faith crisis, here are some thoughts. People will behave in ways that hurt you. Sometimes you will have witnesses; mostly, you won’t. You will have feelings about the things that harm you, like shame and embarrassment and even rage. Some people will disagree with you about those feelings and whether you should experience them at all.

Here’s the wild, subversive, beautiful bit: You don’t have to change, suppress, or deny your feelings. You get to sit with them, express them without questioning their fairness, their reasonableness, their right to exist. Then you get to let them go, and carry on living a kind and gracious life, whatever that looks like for you.

If you want to educate those who hurt you, if you want to cut them some slack or analyze their reasoning or question your reading of the situation, there will be plenty of time for that later. But the immediate aftermath of a painful thing is not for educating or reasoning or arguing on Facebook with your cousin’s hairdresser about whether it was really as bad as you claim. No, immediate aftermaths are for your anger, and your shame, and your frustration with this silly old world.

Put out your gaslight, friend. You won’t be needing it anymore.

Thin and in Control

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It seems odd to think about it now, given my rocky relationship with food over the past five years, but at one time, I was known for being particularly thin. People told me to eat more—when they weren’t praising my asceticism, of course. Women sighed bitterly whenever I ate anything more nourishing than a celery stick. Everyone around me seemed to vacillate between worrying about my health and telling me I looked amazing. My then-boyfriend ran his hand over my ribs, marvelling (worrying?) that he could count them without effort.
Throughout my time in university, as I grew steadily thinner, I fielded a befuddling mixture of genuine concern and envy-tinged adulation. And time after time, I was asked just how I did it. I wasn’t a faithful gym-goer, nor a diligent meal planner; and, as my family members lamented, my genetics weren’t favourable enough to make thinness a given. How on earth was I pulling this off, with my careless diet and nonexistent fitness regimen?
I met these questions with vague references to “being careful” and “trying to be disciplined.” I went no further, and nobody questioned me because, as research has shown us, thin people are assumed to be more competent and more disciplined than people of size. It didn’t add up, and there was nothing about my life to envy or emulate, but even those who knew me well perceived me as deserving of my slender shape. I didn’t work especially hard to disabuse them of that notion.
Meanwhile, my ‘secret’ to long-lasting slimness was a good deal less glamourous, and far less controlled, than you might imagine. The short version is this: I have chronic illness, severe stress, and disability-related isolation to thank for my thinness, and nothing more. One need not run marathons, nor fast for days, nor down diet pills to get skinny. One need only be too sick to eat, too stressed to care, and too isolated to ask for help.
Not magazine-worthy, I know. Harsh truths rarely are.
As I’m sure you’ll agree, it would have been painfully awkward to divulge the desperation behind the scale’s gratifying announcements that I was 125, 120, 115 pounds. It would have been unspeakably strange if I’d admitted that if you want to follow in my footsteps, it will involve a lot of migraines and exhaustion and terrible orientation and mobility skills that keep you from buying your own groceries. It would have been a real buzzkill if I’d said, point blank, “I stay thin because I throw up a lot from the horrible headaches I get three times a week, and I’m too depressed to eat anyway.” Weird, right? Not appropriate lecture hall chatter, and awfully distressing for the poor soul who just wanted to say something nice.
So, people figured I was very good at health management. I let them go on thinking that, even as I waited too many weeks between grocery runs because my blindness skills were atrocious and I couldn’t find the nearest store; even as the migraines got so bad I started having blackouts; even as I lost so much weight it stopped being sexy and started being worrisome.
The alarming thing is, even those who knew something of what was happening to me didn’t probe much, because thin people are in control. Thin people are healthy. Thin people have got this.
Depression had killed my appetite, and migraines had knocked it even further off balance. But my jeans fit like a glove, so all looked well.
As I write, I can say with confidence that I am the healthiest I’ve ever been, even though I’m carrying several more pounds than I did then. My migraines are much less frequent, and they no longer come bundled with stroke symptoms and paralyzing fear. I’m eating regularly and for the most part, nutritiously—no more living on crackers for a week and a half (yes, that’s literal). My mental health is reasonably well-managed, I’m strong enough to work out regularly, and I’m as functional as I’ve ever been.
These days, more or less, I am in control. I am healthy. I am disciplined. I’m not quite so thin anymore, but I’ve got this.
So next time you’re tempted to ask someone how they do it, spare a thought for what might lurk behind that pleasing body shape. It may be good genetics or solid habits, but it also might be a whole lot of misery they’re not ready to talk about.
And next time you’re tempted to work toward being smaller, taking up less space, ask yourself: Will I be healthier? Happier? Stronger? More in control?
In Sara Groves’ Finite, one of the best songs out there about human insecurity, she encapsulates the treadmill-like futility of fighting to stay “younger, thin and in control.” She wonders “where the peace went?”
From what little I’ve known of the journey toward a healthier life, that peace doesn’t come from your scale or tape measure or your friends’ envious validation.
Take it from someone who has been small, and lived small, too: Whatever your size, it comes from eating well, moving when you can, and never being too afraid to ask for help.
You are finite. You are exhaustible. And there’s a lot of peace in that.

Guest Post by Elise Johnston: Smart People, Silly Questions, and Knowing What We Cannot See

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Most blind people who have spent any time dealing with medical professionals have learned to expect some very bizarre questions. Experienced practitioners can sometimes seem disconcertingly ill-informed as soon as disability is involved. Trained as we are to place vision at the centre of the human experience, it’s not all that surprising that even the experts think blind people can’t, say, live a normal life, or experience romantic attraction, or independently express their own identity.

Elise Johnston, a prodigiously talented trans writer who has been blind from an early age, has graciously agreed to share her own experience with the “smart people, silly questions” phenomenon. I hope her story will make you laugh and, more importantly, get you thinking about how and why medical professionals–the ones authorized to make life-changing decisions for us–assume that people without sight are people without understanding.

“So,” the psychiatrist asks you, in a delicate, hushed voice, “as a blind person, how can you be transgender?”

Pause. Breathe. Collect thoughts. Ignore impulse to scream like tea kettle.

You know how you’re sitting on this couch, petting the psychiatrist’s snuffling Boston terrier and telling your heart, “No, it’s not a good idea to jump out of mouth. That won’t bode well for getting the letter of recommendation for gender affirmation surgery. That’s the reason for being here, remember?” You know about this, right?

And you know weird questions might be coming because this dude just gives off that vibe. Also, you’re blind, and blindness makes smart people say stupid things.

But compared to able-bodied cisgender dudes with the power to make or break the lives of desperate patients, what the hell do you really know, right? Right?

“Wait,” says Meagan, reading the first draft of this blog post, “I doubt all of my readers know this gender jargon.”

Fine. I’ll explain.

[Trigger warning: special rainbow snowflake words and concepts follow. Hang on to your pearls.]

Gender

First of all, take the equipment out of the picture. That’s biological sex, not gender.

Okay, so find some new parents and watch how they treat their baby. Blue balloons or pink? Barbies or trucks? Ballet or soccer practice? “She’ll break hearts” or “he’ll go places?” That’s gender. Sure, there are beautiful exceptions to the binary, but that’s the general pattern, the pattern of gender as we know it.

Lest there be lingering confusion, gender is not about who you’re attracted to (or not attracted to), and has no specific relationship to sexual orientation. So forget about sex. That’s what I’ve done most of my life. Which leads us nicely to…

Dysphoria

Imagine you step in a rain puddle and soak your socks. And you’re not allowed to change your socks for the rest of your life. And every time you go somewhere, you step in a new puddle and soak your socks again.

Now imagine that your sock is your body and the puddle is your family, friends, teachers, employers, neighbours, everybody. They’re always drenching you in cold wetness. They can do this by calling you a name that doesn’t fit or using a pronoun that doesn’t fit.

If you don’t have an imagination—let’s face it, so many of us don’t—ask everyone in your life to use the opposite pronouns when talking about you and call you a name that’s not traditionally associated with your gender. Feels weird, right?

This weirdness is called misgendering, and the feeling of constant intense discomfort is called dysphoria.

Transgender vs. Cisgender

Everybody is assigned a gender based on whether they have a penis or a vagina when they’re born. “Let’s just forget about the huge number of people who have neither or a mixture of both,” says the doctor.

If what the doctor says agrees with you on the fundamental existential level, then hurray! You’re cisgender. You can go about your life discovering other interesting challenges to occupy you until death, like deciding how best to troll Meagan’s blog.

If the doctor’s assignment feels entirely, devastatingly mismatched, if you live with permanent feelings of depression and wet-sock misery, then you might be transgender, and wish to pursue transitioning.

Transitioning

This is when a transgender person explores a gender other than the one they were arbitrarily assigned. They might try on their siblings’ clothes, prompting disgust and anger and plenty of parental panic. If they have facial hair, they might burn it off with lasers or electricity. They might pursue gender affirmation surgery to help with dysphoric feelings, and get to deal with gatekeepers like our fine psychiatrist friend.

They may also take estrogen or testosterone. These can cause breast development or lower the pitch of the voice, among other marvelous things. Think puberty.

Back to My Story…

I presented the psychiatrist and his dog with my favourite transformation metaphor, with much solemn throat-clearing:

“When I was a young caterpillar, I despaired of my fuzziness, especially when said fuzziness appeared on my face. I longed to grow breasts—I mean wings—and take to the sky as the butterfly I felt like on my rainbow insides. Life was a tipsy wheelbarrow, full of loneliness and despair, tossed about on a stormy sea, sailing downhill toward Suicide Lake.”

It’s the same story I’ve told my parents, my friends, my therapist, that other psychiatrist, the GP who prescribes my hormones.

Except, then came the curveball, the weird question to end all weird questions. Here it is again, just for effect:

“So, as a blind person, how can you be transgender?” he asked. “Like if you can’t see women, how can you possibly know that you want to be one?”

Oh dear, I thought, I have just boarded the elevator of wrongness, and this elevator music is a symphony of shit. Let’s break it down:

This PhD thinks blind people can’t grasp gender like a sighted person can.

This credentialed, respected, supposedly woke expert thinks one must see woman to know woman.

Anyway, because I have access to someone else’s blog, and words are free, here’s what I told the psychiatrist. Maybe you might identify with some of it, especially if, like me, you don’t tend to base your idea of gender on how people look, invalidating the lives of blind people everywhere.

Firstly, in my world at least, gender isn’t biological. It’s not a matter of body, it’s a matter of brain. Or maybe it’s my gut? Or my heart? My bones?

I’ve been convinced for as long as I can remember that I am a woman, making one of the assumed premises of the psychiatrist’s question invalid: I don’t want to be a woman; I am a woman. What I want is an exterior that matches my interior, and I don’t need sight to be sure of that.

Secondly, my experience of gender is one of relationships, how people treat and mistreat me. Whether I’m included or excluded in activities and spaces – am I invited to the stag or stagette? It’s about my assumed preferences on beverages (wine or beer?), books (YA romances or SF alien porn?), movies (action or chick flicks). It’s about whether I’m expected to feel one way or the other about comedy, music, personal hygiene, hobbies. It’s about the instrument I’m assigned in band class (baritone, because flutes are girly), the birthday presents I receive, the clothes I’m expected to wear. It’s not all about the clothes, though god, it really is all about the clothes.

I do, of course, have dysphoria about my body. Else I wouldn’t be sitting on this couch talking to this psychiatrist, hoping he can unlock the doors of his mind and accept the idea that people without sight are not people without experience.

I am indeed fortunate that my dysphoria isn’t triggered by seeing other women, but it is triggered by lots of other things, like hearing about periods, hugging them and feeling a chest that isn’t flat as a pancake, bumping into hips that aren’t cursed by narrowness, and knowing that those lucky bitches do not have to contend with the cursed crotch bulge.

So yes, on some level, my dysphoria is triggered by intellectual knowledge and not by visual reminders, but unlike certain cisgender dudes with doctorates, I actually use all of my senses around people, and even, on occasion, my brain. In fact, for me, one of the most dysphoric things in my life is my voice.

The Point of it All

The point, thanks for asking, is that whether we’re blind or sighted, our senses of self are bound up in our gender. I’m not sure about everyone else, but I don’t need functional eyeballs to tell me when there’s something out of whack with my sense of self.

But I’m just an anxious, blind transgender lady with two post-secondary degrees and a shit ton of lived experience.

What do I know?

Disruption, Script-Flipping, and the Art of Carrying on

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While riding the elevator this morning, a stranger paid me the kind of compliment that normally sets off alarm bells.

“You seem so independent,” he chirped, pushing the elevator button for me as he did so. (The irony, my God the irony.)

“Well, I’m used to being blind, so it’s no big.”

“But you seem like someone who doesn’t blame the world for your problems, you know?”

“I mean … I just sort of get on and do, right? That’s all you can do.”

“Exactly! See, not everyone gets on and does. You’re choosing to do it. I’m telling you, you’re a ray of sunshine.”

I did my usual smile and nod thing, internally preparing myself for the usual inspiration porn doom spiral. The script, well-rehearsed by now, goes something like this:

I’m not inspiring. There’s nothing praiseworthy about living my little life. People think I’m impressive but I’m not. I am reduced to their daily hit of inspiration. They’ll never really see me. I’ll never get past this. Bring me my saddest violin. Life’s but a walking shadow. Et cetera et cetera.

This time, for reasons I don’t yet understand, a different script presented itself: What if he was right?

Not precisely in the way he intended, of course. In the immortal words of so many of my visually impaired friends, ‘blindness is whatever.’ (We’re an eloquent bunch.) But could I, just this once, flip the script? Could I worry less about feeling guilty because I don’t educate every single person I meet? Could I be praiseworthy for “getting on and doing” for reasons other than my most prominent disability?

A mere hour before this interaction, I was talking myself out of bed. My tension pain was flaring up. My recently-healed back injury had left a grumpy ghost behind, always most irritating in the mornings. My depression was pressing down more heavily than usual, insisting that my very happy life was actually not happy at all. I was dealing with a longstanding accessibility issue at work, and I didn’t want to confront it today.

And I ignored all those reasons to stay down. Not such a grandiose achievement, nothing cinematic, but still: I carried on and did what needed done, independently, because that’s what I do.

Maybe my resolve, my tired but determined air, was visible to this kind stranger, even if he attributed it to the wrong struggles.

So, was I allowed to interpret his compliment in a way that made more sense to me? Is flipping the script, disrupting those nasty doom spirals, a legitimate way to deal with those moments where education just doesn’t fit? Do I ask myself way too many questions?

I’m gonna say yes. For the sake of my sanity, my energy, and my need to take a break sometimes: Yes!

Here’s to the noble art of letting the little things go.

Here’s to living as the person you are, not the one you think you ought to be.

Here’s to life being so much more than an endless parade of teachable moments, not all of which you can possibly be expected to seize.

Here’s to chilling out and, every now and then, taking that problematic compliment—because guess what?

You’re tired. I’m tired. You’re doing cool things despite the obstacles, and so am I.

So, by all means flip the script when you can. It’s good for the soul.

I Don’t Want You to be Grateful

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I don’t want you to be grateful that you don’t have my life. I want you to ask yourself why it’s so hard, why it’s so unfair, and what you can do about it. I want you to see the barriers—the inaccessible environments and the crushing weight of low expectations—and realize that, without these roadblocks, it wouldn’t be quite so hard and unfair. I want you to know that I wasn’t put on this earth to encourage you to appreciate what you have. I want you to understand that, in a more inclusive world, there would be little need to look at a disabled person and think, “Thank God that’s not me.” I want you to know that through the smallest acts, you can help make that happen.

I don’t want to inspire you. I want my ordinary actions to be just that: ordinary. I want to be more than a motivational meme or symbol of struggle. I want you to see me, not just the white cane, the dog, the wheelchair, the diagnosis, the brain or the body that doesn’t work exactly like yours does. I want you to admire my strong points without erasing my weak ones. I want you to stop attaching “for a disabled person” to every compliment you pay me. I want you to see my talents and charms, my flaws and my quirks—the things that make me every bit as human as you.

I don’t want you to tell me you’re my ally. I want you to show me. I want you to model that care with your actions, your values and your votes. I want you to describe your photos and call out that friend who’s always complaining about the “handicaps” on welfare. I want you to ask why that new restaurant doesn’t have an accessible entrance. I want you to recognize that a thousand social media posts can never equal an in-the-moment act of kindness. I want you to accept that how you make me feel is far more impactful than what you tweet.

I don’t want to be in your diversity poster, your diversity working group, your diversity brochure. I want to be consulted for practical solutions, not publicity stunts—because my time is worth more than that, and so is yours. I want you to seek my feedback not because the optics are favourable, but because my perspective is of value and I have something to offer you. I want two-way streets. I want to help move things forward, but I can’t do that while I’m sitting at the token table.

I don’t want to make you a better person. I want to increase your awareness and deepen your understanding. I want to point you toward opportunities for growth and education. I want you to be part of the solution. I want you to stand beside me as my equal and my ally, not because it makes you a good person but because better treatment of disabled people makes good sense for everyone.

I don’t want your charity. I want you to hire me. I want you to rent to me. I want you to let me take your class. I want you to be the patient or the client or the customer who doesn’t flinch when a disabled person walks into the room. I want you to trust that I am suitably qualified and that I will meet your standards. I want you to be comfortable with the concept of working, productive disabled people. I want you to wonder why there aren’t more of us.

I don’t want you to be my voice. I want you to acknowledge that I have my own voice. I want you to amplify it, bring it to the ears of those who wouldn’t otherwise listen. I want you to help the world understand that I am not, and have never been, voiceless. I want you to refuse when you are asked to represent me. I want you to point in my direction when someone asks, “What does she think? What does she need?” I want you to step back, because I am my own best advocate. And when the world asks you to speak for me, I want you to pass the mic, because my story is mine to tell.