Who Am I, And Where’s My Dog?

Who am I?

My name is Meagan. By day, I’m a communications advisor; by night, a freelance editor, a hobby musician, and devoted devourer of books.

I keep busy playing the piano (I’m not very good at it) and correcting other people’s grammar (which they actually pay me to do). I’m a mercurial introvert with a ton of excellent friends who love me anyway, and a wonderful husband who somehow manages to put up with my quirks.

I procrastinate like all good writers should. I love all creatures great and small, cute and fluffy. I really, really love chocolate, and I really, really hate bugs.

In other words, I’m a lot like you…

Oh yeah, and I’ve been blind from birth.

You might be thinking, “Wait, what’s that you said about being a lot like me?”

Unless you hang around with blind people a lot, you probably can’t help thinking that there’s a certain otherness that characterizes people with visible disabilities like blindness.  In some ways that’s true. We definitely stand out. We walk around with long white sticks (or maddeningly cute doggies you’re not allowed to pet), and we possess a lot of devices that talk. And blind people like me, who have other, less visible disabilities on board, deal with a lot of little-known issues we simply don’t discuss often enough.

That said, we’re just like you. We have the same fears, hopes, aspirations, and ambitions that “normal” people do. We go to college, and work, and have kids, and play sports, and keep house, and hang out with friends, and do all that “normal” stuff.

So, you may ask, and with good reason, “If you’re exactly the same as everyone else, why write a blog about disability?”

For too many years, I believed I had to play up the “normal” bits of myself to the point where I was practically in denial when it came to my disabilities. I believed that a “good disabled person” had to behave as though her disabilities didn’t exist. If they did exist, they were no inconvenience at all. No big deal, I can function just like everybody else, maybe better. I am capable disabled gal, hear me roar!

What I’ve learned since is that, while it is very healthy not to centre my life around blindness and my other disabilities, it’s equally healthy to acknowledge that they’re really damn annoying sometimes.

They’re inconvenient. They make life harder, mostly because of the way people react to them. They’re not divine gifts that make me a better person. They’re just parts of me, undeniable but not all-consuming. And I want you to know what it’s like to live with them.

I want you to know that I routinely deal with questions like “Where’s your dog? You should have a dog!” and “They let you work here?” and my personal favourite, “How can you possibly have a life? How can you be happy?”

I want you to know that I occasionally run into doorways and walls and cabinet doors with frightening force. If you see me with a black eye, it was an inanimate object, not my husband, promise. Sometimes I drop things and then crawl around for a dog’s age trying to find them. Sometimes I miss spots when I clean my house. Sometimes I accidentally throw whites in with my coloured laundry. These are the minor things.

I also want you to know that it’s really tough to get hired because so many believe I can’t work. Sometimes, people treat me like I’m invisible or inhuman, because they perceive me to be fundamentally different and, by extension, inferior. Sometimes, people talk about me like I’m not there. Sometimes, people complain because I’m “a drain on the system”. Sometimes, I feel desperately lonely and misunderstood. Sometimes, I really, really resent being disabled. This ain’t a picnic in the sun…sometimes.

Mostly, though, I want you to know I’m pretty “normal” and happy, like I said.

I’m writing this blog because if I can make one person understand what my life is like, then I’ve succeeded. If I can make one person realize that we’re not so different, inferior, invisible, then my time hasn’t been wasted. I don’t speak for all disabled people, but I do know that my story is very much like many others.

If you’re still with me, stick around. Who knows? You might learn something; and if you don’t learn anything, I might at least make you laugh.

But wait–where’s my dog?

I don’t have one, … and that’s okay.

The Privilege of Showing Up

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.

My Best, Most Exhausting Self

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Notes on Hungry Contentment

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

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, 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.

Make Yourself Uncomfortable. I Dare You.

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Yes, I see you there.

 

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

 

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

 

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

Losing Touch in the Time of Coronavirus

So far, 2020 has been the year of losing so many things: The ability to gather guiltlessly, the security of jobs and livelihoods, the assurance that the healthy people you love will probably not fall prey to an unknown virus. Like everyone I know, I’ve struggled with the loss of routine, of connection, of the gift of nonchalance when I wake with a scratchy throat.

Most acutely of all, I feel the loss of touch. By this I don’t merely mean the obvious, near-universal longing for human contact. I’m not talking so much about warm, fearless hugs and handshakes that don’t involve hand sanitizer or the furtive acknowledgement that we’re not really supposed to be doing this, are we? I’m a warm-and-fuzzy, touch-oriented person, and have been known to find touch from strangers, under the right (consensual!) circumstances, to be bracing and beautiful.

But as a blind person, I have lost more than these. I have lost my ability to move through the world with the elegance and precision I once enjoyed, if you can call anything I do elegant. You don’t realize how often you touch things until you are required to wipe them down afterward. In my shared workspace, for instance, I have given up tea, coffee, and even water I don’t bring from home, because it’s just too hard to navigate a common kitchen as a blind person without putting my hands all over everything. When things stay in one place, as they do in my home kitchen, I can pretty much plop my hand down on exactly what I need, no groping required. The rest of the world doesn’t operate with the same dedication to putting things precisely where they found them.

I’m a scrupulously clean-handed person, partially because of all the touching I need to do to find things, but I still feel self-conscious as hell touching anything at all in the time of COVID-19. After many tense conversations with blind friends all over the world, I know I’m far from the only one.

I search for the wipes, which move ten times a day as people use them, only to encounter someone’s discarded mug, a basket of sugar packets, a roll of paper towels, somebody’s oatmeal bowl. These I must now sanitize.

I fumble and wave experimentally into the ether, searching for the hands-free door-opening mechanism I know is there but can’t quite find without making contact with it. Before March 2020, I’d have simply opened the door manually, because that’s far more precise when you can’t see. But now there’s a policy about these things, no touching doors please, so now I’m flailing.

I trail my hand along a row of seats on a bus to find an empty one. I press buttons just to cross the street. I touch a door handle, then my cane, then a railing, then my cane again, then a length of wall to orient myself, then my cane again, and so on, because who has time to stop and sanitize every few feet?

I ask for help figuring out the buttons on a pin pad. I instinctively default to hand-over-hand exploration when someone tries to teach me something new, because touch transcends language barriers and clumsy directions better than any medium I know. I automatically reach out to touch when someone wants to show me their new haircut or cozy sweater or nifty pair of shoes, because that’s a small but meaningful part of how I appreciate the world around me. Then I pull back and blush hard with embarrassment, feeling empty and off balance for a moment.

I ask for an elbow each time I must be guided, and for the first time in my life, this feels like an unspeakable favour to ask, a brazenly selfish and risky request.

“Hi there, may I, a stranger, put my hand on you in the year of plague and terror? Hate to ask, sorry, but my mobility skills aren’t great and this area is totally unfamiliar to me and I can’t keep up with you otherwise. Really sorry about this. Want some sanitizer for your elbow?”

Besides the impact on other people, and the self-consciousness that comes with using high-touch surfaces to orient oneself in an era where the word ‘high-touch’ gives people nightmares, I’m also dealing with the logistical puzzle of keeping myself safe without sacrificing independence. Just how often should I sanitize? How often do I need to wipe down my cane? Is there a hands-free way to do the things I’ve always done by touch, and if so, how safe is it? How can I follow social distancing guidelines when they’re shown using arrows and signage and other things I can’t perceive? If I accidentally bump someone, will they behave aggressively toward me, even if there was no way for me to prevent it? Should I walk around with Ziplocs on my hands? Really lean in to it?

Then there are additional concerns my friends with service dogs deal with, like how do they keep their dogs from getting covered in a bunch of COVID particles? How well will their dogs adapt to social distancing conventions? What if their dogs get infected, which doesn’t seem common but has been known to happen to both cats and dogs? What if someone decides to pet, feed, or otherwise mess with their guide in the middle of a pandemic? Heaven knows propriety, safety, courtesy and basic respect haven’t been adequate deterrents before now. Why would a novel coronavirus change that?

Time and experience will provide me with more answers than I have now. If nothing else, the self-conscious shame I feel each time I so much as brush a counter or chair-back with a fingertip will fade, because I can’t sustain that level of anxiety indefinitely, thank goodness. Many guide dog handlers and fellow cane users have told me they’re feeling more comfortable all the time, and I will, too. One day soon, I’ll memorize the locations of all the hands-free door-openers and no doubt be brave enough to pour myself a coffee at my workplace. Maybe I’ll even convince people to stop moving the wipes, dang it.

Until then, I’ll trot out my favourite refrain since this whole mess began, as much for myself as for you, dear reader. Stretch yourself, even as you feel fear and self-protection, to be extravagantly, abundantly, excessively kind to each other. If you’re disabled and annoyed with this new normal that seems designed, unintentionally but maddeningly, to shut you out and strip you of your confidence, assume there are ways to make things better, and help others implement them. If you’re sighted and feeling icky watching a blind/disabled person interacting with their environment in a way that seems too hands-on for comfort, be helpful and patient, because we’re all confused and none of us has this figured out just yet.

Wash your hands, wear your masks if you can, and stay healthy, friends. And most of all, be good to one another. We’re going through a major global upheaval whether or not we choose to be the best of ourselves through it. We may as well lead with grace.

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

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.

Your Luxury is My Lifeline: Standing up for Transit in a Driving City

I was shocked when I saw it, buried unceremoniously at the bottom of a news brief where the less important stories end up. My city is considering shutting down transit altogether, for the entire summer, to offset the economic impact of COVID-19. It was later clarifiedthat this is not the only or most likely scenario, but it still hasn’t been taken off the table. Unless aid is forthcoming, the next few months will be long ones for people like me, who are medically unable to drive, and who have no affordable way to get around in a city that was never designed to be walkable outside the downtown core. The article acknowledged the transit worker jobs that are on the line or already lost, but as far as I could tell, no one was doing much advocacy for transit riders themselves.

No service reductions, no Saturday schedules or fare increases. Just a total, blanket shutdown. And paratransit, a specialized service for disabled passengers who can’t always use conventional transit, wasn’t even mentioned.

As a series of motorcycles and extraordinarily loud sports cars roared past my home office window, gleefully proclaiming their ability to go where they please, when they please, pandemic or no pandemic, my stomach dropped to my shoes.

You see, I get it. The service is reportedly losing millions every month. Ridership is down, since far fewer people are going out to work and run errands, though that is bound to change as the economic relaunch progresses. Transit in my area wasn’t in great shape before this crisis, and now it’s on life support, in a ‘driving city’ with what I’d personally characterize as an anti-pedestrian and anti-transit culture.

So on the face of it, the strategy makes sense. Shut down transit during the warmer months, so that when winter comes and walking long distances becomes impractical and unsafe, there will be money to restart the service. It’s not ideal, but if the money’s not there, then it isn’t.

But if this sensible strategy goes ahead, there will be a lot of quiet collateral damage that few seem prepared to acknowledge.

If you live in Edmonton and are unable, financially or medically, to drive, you’d better hope you live within walking distance of your job, or have plenty of disposable income. Short of working from home until the fall or longer, there are a lot of expensive cab rides in your future.

If you were planning to job-search this summer, you’d better hope you have enough savings to afford the cab rides you’ll be taking to interviews, or the mobility to walk across this sprawling city to get to them.

If you are experiencing homelessness, you’d better hope you can walk or find a ride to access the supports and services on which you depend.

If you are disabled and can’t walk/bike/carpool your way around town, you’d better hope paratransit keeps running. Otherwise, you’re on your own.

If you live outside the city, and you need to visit it for work or school, you’d better hope transit services in other communities keep running.

And if you live in Edmonton and are able to drive, you’d better hope you can continue to afford fuel, repairs, maintenance, parking, insurance, registration and all the other associated costs, because there won’t be a bus or train to fall back on.

I don’t have answers. I’m not an economist, strategist or urban planning expert. I don’t know the best ways to keep transit services afloat when ridership is low and revenues are lower. I’m not calling for specific funding, or political action, or any particular solution. I don’t feel qualified to point at something and say, ‘this is what we should do.’ Wiser, more experienced voices than mine will handle that bit.

What I am calling for is awareness – awareness of the precarity of public transit, the diverse population it serves, and the reality that a city without transit is a city without equitable access to opportunity.

Here’s the thing: For drivers, transit is easy to ignore or dismiss. I’ve met drivers who have never taken a bus in their lives, and who claim they never would; they’d cab first. Transit is for ‘other people,’ people who aren’t like them, people they can’t possibly relate to. Why would anyone willingly use it if they have any choice?

I’ve also met drivers who do use it, here and there, but only to avoid parking fees or heavy traffic. For them, it’s a matter of convenience and penny-pinching, not a tool they rely on to get around. If it vanished tomorrow, they’d hardly notice.

But transit is not a nice-to-have. Transit is a lifeline ensuring that everyone can work, attend appointments, go to school and enjoy a rich social life in urban areas.

Transit is the service that, for me and most blind people I know, makes independent living possible. Its availability dictates where we work and live. Chances are, if a community doesn’t have adequate transit, blind people won’t stay for long.

I left my home town, my family, my support system and my local community, so I could build a life on my own terms. It is transit, more than anything else, that has given me that gift. If transit goes, then I will probably go, too.

So please, look up and pay attention to this story, even if you never take transit. Join the conversation, because your coworkers, your family members, your friends may lose jobs and even move away if they lose transit, even for a few months. Realize that in many cities, transit service was already in trouble, already undervalued, before a pandemic came along to make things worse.

This isn’t about one transit shutdown in one city, something you can shrug off and assume to be irrelevant if you don’t live here. This isn’t about fringe benefits or luxuries. This is about keeping people working and living on an equal footing with those who drive. It’s about protecting vulnerable groups, who are always the first to suffer when public services are cut. It’s about making sure everyone can contribute to society, right where they are, no matter their circumstances.

Those aren’t nice-to-haves. Those are must-havse.

Battling for My Castle

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.

Stronger (and Clumsier) Together

Many people have been working from home for a long time, and are used to doing everything by phone or video chat. The novelty has worn off for them, and they know how to conduct themselves gracefully, more or less. But for the rest of us, the last couple of months of teleconference meetings and online group chats have been, well, an adjustment. Managing group chats and teleconferences is an art, and we are not yet artists.

I’m not a phone or video chat person at the very best of times, and these are not the best of times. Much of that aversion is due to my general preference for written communication, and fierce discomfort with awkward situations.

It turns out some of it is a new understanding of how much the average person depends on nonverbal communication. It’s a cliché at this point, and blind people are frequently taken down a peg via sketchy statistics about exactly how much communication is unspoken, but it’s never been slammed home quite like this for me before. Physical distancing has meant no one can see each other well, or at all, and boy, does that change things.

I don’t know about you folks, but all my phone and video chat meetings have felt infinitely more confusing, and much less satisfying, than in-person gatherings. The flow of conversation is stilted, even when audio quality is high. People interrupt each other constantly, and it’s clearly accidental. Audio and video delays make it harder for people to follow group conversations, since what they hear does not line up with what they see. Larger meetings have lost their effortless interactivity, because people can’t read a room when there’s no room to read. A lot of the visual cues sighted people use to make sense of complex group dynamics have vanished, and they’re all tripping over each other as a result.

Me? I’m just my ordinary clumsy self, no worse off than usual, but I’m suddenly contending with everyone else’s confusion, which makes for awkward times.

And so, once again, I am reminded that I should be a tiny bit kinder to myself when I’m out in the world, mingling with people who have a distinct social advantage. COVID-19 has encouraged me to acknowledge how much effort and skill I bring to all my social interactions, and to admit that, hey, I’m actually pretty good at navigating social situations while missing the majority of cues on which everyone else relies.

All these years, I, as well as sighted people around me, have been hard on me for the cues I miss, the delicate social dynamics I’m oblivious to, the times I interrupt people because it’s apparently not my turn to speak. I have sat through hundreds of fast-moving group conversations, frantically filtering the chaos, opting not to speak at all in many cases to avoid the awkward social dance.

Is someone about to speak? Is it time yet? Are people looking elsewhere? How have people reacted to what I’ve just said? Everyone is quiet. Whyyyyy are they so quiet? Are they processing? Waiting for more? Was it okay? Am I doing okay?

It’s obvious, I know. Of course this was happening because a hell of a lot goes on in silence, where I can’t perceive it, in ways I can’t possibly interpret. Of course I should expect to struggle more and feel clumsier; I’m working with less than half of the information everyone else has! Shouldn’t a person who has been blind for a quarter-century know that without visual input, everyone else is just as clumsy as me?

Well, yes. And I did know it, intellectually. Watching it play out firsthand, however, has been interesting and, dare I say it, validating?

Watching socially adept sighted people make ‘blind person mistakes’–getting confused, losing track, interrupting, addressing people who have already left the conversation, going quiet because it’s all too much–well, it’s been helpful. I take no pleasure in it, and I have no doubt we’ll all find our groove soon. But it’s been an excellent opportunity for me to realize, all the way down, that I’m doing pretty okay out here.

If you’re a fellow blind person who has gotten down on yourself for missing cues and failing to interpret the impossible, I invite you to chill. I also invite you to extend that chill to other blind people as they flounder through this visual world. And let’s be patient with sighted people wrapping their heads around this new way of communicating, just as they have been (mostly) patient with us.

We’re all in this together. We’re all clumsy, and awkward, and out of our depth. Together.