I remember the first time I worried I might not ever be okay.
I was fourteenish, embroiled in a toxic not-quite-relationship with an older boy who’d discovered the exquisite pleasure of exploiting my insecurities. I had burgeoning confidence in my potential; I could picture a successful, if difficult, road ahead. But secure, relatively intelligent young girls who are quite sure they’re doing all right aren’t any fun to manipulate, so he began to poke holes in my bright future.
“You really need to be more independent,” was the regular refrain, delivered with tender cruelty I was meant to mistake for tough love.
“It’s a hard world out there, dear,” and “you’ll struggle for sure,” and “good thing I’m here to help.”
I got miffed, all the time. I even pushed back some, when courage was close at hand. On some level, I understood these criticisms were as rich as turtle cheesecake coming from a person who had accomplished less in his 18 years than I had in the four years that separated us. I had a lot to learn, in the blindness skills department most of all, but I was competing at music festivals, getting excellent grades, and managing not one but two chronic conditions without much medical support. I was about as on track as any teenager I knew.
He, on the other hand, was perpetually angry, hopelessly off track, with an uncertain future and a penchant for blaming his disabilities for abusive outbursts and bouts of frightening possessiveness. If anything, I should have been the one clucking with concern, but much as I sensed the wrongness of it all, I let his doubt poison my faith. Faith is there when the odds aren’t favourable, and to be disabled in a harsh world is to live with unfavourable odds. And faith, more than skills and talents and support, has always been the engine of my success for that very reason. I’m convinced he knew that.
In my senior year of high school, that engine had all but stalled. I’d broken all contact with that toxic friend long before, and he had since died suddenly. He could no longer mail me packages I didn’t want, or threaten suicide if I didn’t play nicer, or use social media to stalk me, or email sanctimonious lectures about my tragic inability to take care of myself. But the damage was done. He had triggered a landslide of second-guessing that, helped along by myriad forces in my life, had buried me to the point where all I could do was dread everything – dread university, dread my first job, dread new cities and exciting adventures and fresh mistakes to run with. I still had so much to learn, and I was paralyzed, rather than energized, by all of it.
Depressing, amiright?
Fortunately for us all, this is a new-year-new-decade reflection post, and those have to have a happy ending and a hopeful outlook. Them’s the rules.
The past decade has presented a lot of pain and self-doubt, brought on in many cases by the doubt of others. The pressure to make something of myself—to ‘transcend’ blindness, chronic pain, mental illness, limited educational opportunities, the whole bit—sat smugly atop the self-defeating prophecy that I’d never do or be enough. What was the point in trying?
But it has also blessed me with plenty of people who had so much faith that they couldn’t conceive of me being anything other than enough, maybe more than enough. I’d make mistakes, sure, and fall flat on my face a few times given that stubborn streak running through me. Ultimately, though, I’d pick myself up and keep charging ahead, because that’s just who I am.
“Listen,” one friend said bracingly during one of my late-night fall-apart sessions, “you are going to screw things up sometimes, in the blindness department and in the general life department. You’ll put reds in with your whites and burn hell out of your dinner and at some point you’re going to get really lost in a new place, and all of that will suck.”
“Exactly!” I wailed, missing the point spectacularly.
“It’ll suck, but you’ll wake up the next day and realize that life keeps going. And you’ll discover after a while that trying stuff is messy and scary and you can’t be good at everything you touch. I was embarrassingly far into living on my own before I felt comfortable with my life skills. I survived. You’ll survive too, and then you’ll understand that when someone says ‘you’ll never make it,’ that’s not helping you. That’s not motivation. That’s not love.”
This come-to-Jesus moment came on the heels of another friend getting so sick of my constant self-flagellation that he nearly cried with sheer frustration.
“I swore to myself I wouldn’t sit here and watch you do this to yourself anymore. Seeing you beat the shit out of yourself all the time hurts me, and it’s not my idea of a good time. Cut it out.”
(Some of my friends sure knew how to bring the constructive tough love, wowsers.)
As many of you know, I did end up going to university and getting jobs and doing fine on my own. I learned most of the skills I’d need to do well in the world as a disabled person, as a writer, as a professional, as an aunt and mentor and wife. And at one of my lowest moments, total strangers would remind me that I’m not alone in my doubt and my despair, that if you’re running low on faith you can always borrow someone else’s.
This journey hasn’t been romantic, and I’m still learning to have faith in myself and ask for help when I need it. I’m still suppressing the reflex to put myself down, just so I don’t have to deal with fear and failure head on.
But here is the wonderful, indispensable lesson of the decade: now that I’ve allowed people to believe in me, now that I’ve let their faith rekindle mine, brave and beautiful things are happening.
I’m wide open to another ten years of failures, and to many more beautiful things.
relationships
Guest Post by Elise Johnston: Guide Dog Gaps and Anxious Hopes
For many blind people, the gap between guide dogs is something to be dreaded. Retiring a dog is a devastating life event, especially if it happened earlier than expected.
For Elise Johnston, the early retirement of her second dog was a little more complicated. In theory, getting on a waiting list for a new dog as quickly as possible made perfect sense: Her mobility was drastically curtailed without a dog by her side, and getting repeatedly lost on the way to work was getting old, fast.
And yet, even with all the logic in the world pointing toward ‘new dog,’ Elise found herself frozen, as much by indecision as harsh Canadian winter.
Winter 2019: To Dog or not to Dog
So it’s February and, because I am an unmitigated genius with an IQ almost as big as my shoe size, I have retired my second guide dog early. For the first time in more than 15 years, I am using a white cane on a daily basis.
People ask me about getting another dog, and my frozen Popsicle brain offers up a gloomy “No.”
On the face of it, ‘no dog’ makes no sense whatsoever. It’s February, as I say—February in Alberta. It’s so cold that pipes in a downtown hotel have frozen and burst, turning the surrounding street into a skating rink. I’ve started a job in a new building and am only slightly familiar with the root, which includes a convoluted street crossing, and requires laser-precise positioning to make it onto the correct sidewalk.
Gobs of white ghost poop are piled in drifts over all the tactile landmarks. The wind is singing an off-key lament passed my toke-covered ears, obliterating any sound cues, like the audible signal that marks the crosswalk. Memories of being knocked down by a car, which then stopped directly on top of my foot, flash through my frosted-over brain.
My first guide probably saved my life, not with expert car blocking skills or anything, but because he made navigating university possible, given the lack of orientation and mobility training available where I live. And having university to escape to after high school was unquestionably life-saving.
My second guide gave me the confidence to move out on my own, live independently, and get to all the appointments one needs to get to when one is gender transitioning. You could say he saved my life too.
I love dogs. I love the flapping of their ears when they shake themselves, the thump of their tails on the wall. I love giving tummy rubs and getting kisses. Dog hair is a condiment I have no objection to.
But now, ice-cubed and tearful, after being lost yet again during the coldest February on record, I have big problems with getting another dog.
Spring 2019: What We Don’t Talk About When We Talk About Dogs
You go to a job interview and the first five minutes are spent, not discussing your qualifications, but the life history of the dog that accompanies you.
You walk into the kitchen at work and the coworkers gathered there wish your dog, not you, a good morning.
You retire said dog, and when you switch positions the boss in the new position goes, “Oh dear, where’s your dog?”
A dog is novel, and cute, and lots of people like dogs. You, on the other hand, are an icky blind person.
“I have nothing in common with an icky blind person,” says (insert person). “Better just talk to the dog, or about the dog, or tell stories about my own dog.”
You tell yourself: You’re having so much fun without a dog. Sure you wake up at night and listen for the breathing that should be there. Sure you can only pet your sweaters. Sure it’s much harder for you to go places since you don’t have regular access to mobility training. But being upstaged all the time? Having to deal with incessant questions? Giving one of your best friends a hug and listening to her sneeze for hours because of her allergies? Making friendly with people who are besotted with your dog for no good reason other than its “OMG a dog!”
Also, dogs can be inconvenient at sleepovers. They require attention and extra executive function and vacuuming.
And having a dog, loving a dog, means one day you have to say goodbye, and your heart becomes a chew toy that they’re squeaking, squeaking, and suddenly not squeaking because they’re not responding to the antibiotics for their pneumonia and their cortisol levels are sky-high and your family has asked you what you want to do…
Do you want to get another dog? Really?
Fall 2019: Some Mad Hope (and All the Anxiety)
It’s hard to get a handle on why I submitted my application. Probably it was because one of my best friends has a guide and witnessing their bond and the way they work together gave me hope that things could be different. When I did my home visit with the school I am attending for my new dog, we discussed techniques I had never heard of — simple orientation and mobility stuff that would have made a huge difference working with either of my old guides.
There’s regret now when I think about what might have been possible with my previous dogs. Regret, and a new anxiety about how much I still have to learn. This anxiety piles up on top of the existing anxiety when I think about interacting with people on an exclusively dog-related basis.
Why am I doing this again? Do I like being an anxiety sandwich? Have I surrendered to my fate as auxiliary to a much more adorable creature? Am I using Meagan’s blog as an alternative to talk therapy?
But maybe things really could be different. Third time’s the charm?
Spring 2020: Notes From Elise’s Future Dog
You know what’s relentlessly awesome about being a guide dog? It’s having someone who appreciates everything about you—who endures home interviews and goes on waiting lists and rearranges their life so you can be on their team. It’s knowing someone loves you for your brains and not your body. It’s knowing that, while your handler doesn’t love everything about being with you, it’s all worth it in the end.
Sighted people won’t shut up about how beautiful I am. They’re always going, “Oh look at the beautiful dog!” Nobody except Elise goes: “Seriously why don’t you join MENSA?”
I get to go for lots of walks downtown where there’s always interesting stuff going down, like political marches and half marathons and shady drug deals and gay couples walking their cat. Also also,
Elise knows all these totally-good smelling people who are by default my best friends because they’re her best friends.
The other day I got to meet Elise’s retired guide dog, who is kind of an idiot, and he told me that Elise goes on adventures to hospitals and writing conventions and vegan restaurants, which sound like good fun to me! He also warned me sometimes Elise has trouble getting out of bed or off the couch, in which case it’s my job to pretend like I have to go to the washroom really bad, even if I don’t, or to stick my nose underneath her blanket and give her kisses, especially on her bare feet.
I mean, I was going to be a guide dog anyway, and I think I could have done a lot worse. Elise doesn’t drink or smoke or listen to music at obnoxious volumes. She’s done all the boring university already. I feel like she’s finally kind of sort of got her life unstuck and can focus on the cool.
We’re going to go new places and smell new people and chew on new bones and I’ll probably end up saving her life down the road, just saying.
Life is short and that’s why it makes a difference who we spend it with. Am I right? Am I a good dog?
Looking for more? Check out Elise’s previous guest post on gender transitioning as a blind person: “Smart People, Stupid Questions, and Knowing What We Cannot See.”
Cooking My Way Toward Confidence
I’m not much of a cook. I’ll get that out of the way first and foremost. You’ll never catch me humblebragging about my culinary adventures, and my best recipes come from Google. I’m far better at googling than I will ever be at cooking. In fact, part of the reason I fell so immediately, intensely in love with my better half was that the man could cook, and I was in desperate need of a healthier relationship with food. Fiercely independent as I was, I was ready to let someone feed me, and he did so with relish.
I have a tower of excuses for my abysmal cooking abilities. I don’t have the time (I often do), or the spoons (I sometimes do), or the know-how (which I could probably learn if I applied myself, let’s be honest).
The real story is a lot less sympathetic. Simply put, cooking is scary for a blind person who lacks confidence during hands-on tasks, and I’m one of them. I’ll write you a set of speaking notes in less than an hour, for an event I’ve never heard of, on a topic I know nothing about. That’s juuust fine. But please don’t ask me to do anything with my hands other than write, play the piano, and carry your stuff.
“But Meagan,” you insist, “surely you’re overthinking this! It’s not that complicated.” (You’re right. Congratulations.) Special training is not strictly necessary, and the majority of blind cooks I know are at least partially self-taught. It’s tricky, but it’s not arcane.
And yet, the chronic diffidence persists, and it didn’t originate with me. For as long as I can remember, sighted people have been all too happy to enumerate the disasters that might befall me. Knives can’t wait to chop off those precious fingers that help me read and use my cane. Boiling hot liquids are just waiting to terrorize me with much spattering and spilling. Grease fires lurk around every corner, poised to consume unsuspecting paper towels. Measuring is messy. Preparing dishes without visual input is imprecise. Whatever I make probably won’t be perfect. (The horror!)
And so, being someone who fears messes almost as acutely as I fear failure, I stayed out of the kitchen unless compelled to do otherwise. The years I lived alone meant I subsisted on an insipid rotation of frozen dinners, canned soup, and snack foods that lacked nutritional value but quieted my hunger. Every now and again, when I wasn’t busy studying or writing papers in a feverish haze, I’d throw together a salad or heap a random assemblage of ingredients in my slow cooker and hope for the best. My standards were low and I was frequently too ill to eat at all, so this worked for me … for a while.
Once I started working full time and transitioning to “real” adulting, I began longing for more in nearly every facet of my life. I wanted to travel more, socialize more, and acquire the grownup skills I thought I ought to have picked up years ago. My student days were marked by severe migraines and appetite-killing pain, and I was mostly too ill to notice I was living a small, sad existence. Now that I was blossoming, really learning to thrive, I felt I should take the act of cooking more seriously—for my health, if for no other reason. And there they were, my faithful, time-worn excuses.
But this time, there was a new element: my afore-mentioned better half. He didn’t have a lot of time or energy, either, but when he did, he’d prepare delicious meals for me and, eventually, for our friends. Nothing made me prouder than a group of my loved ones sitting at our kitchen table, exclaiming over his prodigious talent. There was immense satisfaction in the act of nurturing people, of bringing them together through the medium of food. An ongoing source of suffering in my life has been the perception that I have nothing to offer. No one needs me, I can’t be counted upon, and I will never make others feel cared and provided for in the ways so many have done for me. It’s a common and heartbreaking reality of disability, which very few of us escape entirely.
But bearing witness to the magic my partner could call forth by simply whipping up a meal and inviting people to our table made me question those long-held assumptions about myself. Perhaps I really was capable of nourishing others as they had so often nourished me. Watching him at work filled me with such an expansive, buzzy feeling of well-being that I decided it was time for me to be brave and turn these one-man meals into a team effort. I wanted to do more than stand on the sidelines of his generosity—a generosity I shared but couldn’t easily express. I wanted to help make it happen.
I’m still a bad cook. (What’s that? You thought this would be a story of radical transformation? Triumph over adversity? Sorry, wrong blog.) I’m not sure that will change, though experience will help me hide it better. What I do have is patience, inspiration, and determination to improve. I also have a partner who appreciates every contribution I make, whether it’s researching recipes or taking care of the food prep he finds unendurably dull. He knows I have a long way to go before I’m satisfied with my skill level, but he is happy to celebrate the baby steps between where I am now and where I want to be. The pure, unbridled joy he takes in those baby steps gives me the space and freedom to celebrate them, too.
With every meal we coordinate together, with every recipe we choose and every cozy conversation that plays out over our cutting boards, I feel my confidence building and, more and more now, a growing closeness not only with the partner I cook with, but the people I cook for. Showing love in words has always been easy, but showing that love with my hands was always an epic struggle. Now, with practice, I am learning to embrace the work of my clumsy, imperfect hands as a pathway to enhanced self-worth and a better relationship—with myself, my partner, and my loved ones.
The cherry on top of the sundae? I haven’t yet managed to chop off any fingers or start any grease fires. (I’ll just have to try harder.)
TLDR: If you’re looking for a way to bring more big buzzy waves of well-being into your life—and really, who isn’t—cook for yourself. Cook for the people you love. If you can, cook right alongside those people, even if the thought of others watching you work is uncomfortable.
Running low on spoons? Don’t have enough time in the day? Scared you’ll mess it up? Do as much or as little as you feel you can. I promise you that whether I do the heavy lifting for a meal or merely slice a carrot or two, the happy buzzy vibes show up either way. It’s the sense of competence and collaboration that matters, not the volume of work done or effort made. The benefits of cooking for yourself and others are endless, and you can’t go wrong with a little extra confidence now and again. I learned that the hard way, so you don’t have to.
Weightless, Wanted, Worthy
While reading Martin Pistorius’s powerful book, Ghost Boy, I was struck by a passage in which Martin, experimenting with a body that does not behave predictably, attempts to make breakfast for his partner, Joanna.
I forced the knife downwards, cleaving it to my will as it hit the side of the toast before skittering across the plate and leaving a glistening red slick on the table. I stared at the battered toast before looking at the floor, which was covered in coffee granules and sugar. The butter looked as if a wild animal had chewed it and jam had erupted like a volcano across the table. Euphoria filled me. I’d made toast, coffee was waiting in the cups, and the water had boiled—Joanna was going to have breakfast. I banged a spoon on the table to let her know I was ready, and a smile spread across her face as she walked in. “How nice to have breakfast made for me!” she said.
Some might interpret Joanna’s enthusiasm as pretense. As you read through the book, you quickly discover that while Joanna is fully aware of the many barriers Martin faces, she supports his efforts to try new things, even when they end in an imperfect, sticky mess. Martin and Joanna’s marriage is founded on genuine respect and validation, with no suggestion that she is giving anything up to be with him. Rarely have I seen such a beautifully balanced framework, where limitations are acknowledged but never allowed to overwhelm the entire structure.
Naturally, reading about Martin and Joanna got me thinking about my own relationship. My partner has a disability of his own, but it is invisible, and comes up so rarely I sometimes forget it exists at all. We live much like a couple in which only one party is disabled, and we both had to adjust to the different things we need from each other to grow and be happy.
In addition to needing all the conventional things, like love and companionship and the space to laugh with someone in the face of life’s trials, I also crave specific validation from my partner—the validation that says, “I acknowledge that you are disabled, but you are no less complete for it.” From day one, even as I walked him through my various barriers and how they might be an issue for him, he treated me like a whole, autonomous person, and nothing less. If I ever feel inadequate or out of place in the context of our life together, it is my own anxiety talking, not his. Again and again over the past few years, I have been caught off guard by the simple, implicit trust this man places in me every day, without thought and without a hint of charity. Strangers on the bus might wonder what I’d do without him, but he frequently asks me what he’d do without me.
What does this look like in practice? Mostly, it’s an intangible thing—more felt than seen, and usually unspoken. I can point to scores of small things that add up to a larger pattern, and that’s how I can best explain the dynamic.
For example, he asks my opinion on things, with the assumption that of course I’ll have one, and of course it’s as valid as anyone else’s. He doesn’t bombard me with questions about how “blind people” feel about X Y or Z. No, he asks about the best way to install a showerhead, or which ingredients would enhance a new recipe, or what political news of the week is most relevant. Far from assuming I mustn’t be knowledgeable about anything outside the realm of my disabilities and personal interests, he assumes that I am likely to know a little about a lot, and if I’m not sure, I’ll be straightforward about that. I don’t always have opinions or suggestions, but it is so novel and so satisfying to be asked as an equal—as someone who knows things and whose judgment can be trusted. It shouldn’t be so remarkable, but I think most disabled adults would agree that unless the topic is disability-related, our voices are often overlooked.
Like Joanna, my partner doesn’t expect perfection from me, but does expect me to experiment, and won’t ever shame me for the results. He would rather I demolish the kitchen cooking breakfast than have me avoid cooking altogether in case something goes wrong. It’s not that he humours me or enjoys watching me struggle. He simply expects me, as his partner, to contribute where I can and shed my irrational insistence on perfection. If I get hopelessly lost while attempting to conquer my travel demons, he’ll still be sincerely proud that I was brave enough to try, without resorting to empty praise or minimizing my mistakes.
As I’ve noted several times on this blog, living well with disability requires a great deal of self-confidence—or plenty of skill at faking it until you make it—because that confidence won’t come easily from outside yourself. If you don’t have faith in your abilities, you may struggle to find someone else who does. The less you feel you have a right to your place in the world, the less welcoming the world seems to be. While I’ve cultivated my own strong sense of self-respect, I’ve discovered it’s far more bracing when my partner reflects it back at me. I am fortunate indeed to make my home with someone whose faith in me exceeds my own, never hesitating to remind me I am whole.
I’ll return to Martin’s words, because he put it so beautifully: “I’ve lived my whole life as a burden. She makes me feel weightless.”
I, too, have lived my whole life worrying that I am too much like unwanted luggage. But he, together with so many others, makes me feel weightless, and wanted, and worthy.
From where I’m standing, there is no greater love than that.
In Defence Of “Internet” Friendship
“So, where did you meet your friend?”
“We used to post to the same forum, and–”
“Oh…so not, like, a friend friend.”
“A friend friend?”
“You know, like a…real friend. Someone you actually know.”
Friendships forged through online interaction have gained considerable legitimacy since I was a wide-eyed teenager first experiencing the internet, but it’s dismaying how often online connections are still casually dismissed by people of all ages. Apparently, there was a top-secret, authoritative friendship conference that resulted in an unofficial friendship hierarchy, which influences the way friendship is viewed by everyone ranging from seniors to high schoolers.
According to this mystical hierarchy, you can’t measure a friendship in love, but in geography. If you only see your childhood friend once a year for a quick coffee and cursory catchup, that still ranks higher than an “internet” friend whom you haven’t met in person but with whom you communicate daily. Friends who live across the street usually carry more weight with people than a friend who lives across the world, regardless of intimacy, frequency of communication, and overall satisfaction derived from the friendship. (This also applies to romantic relationships, as I learned to my immense chagrin while dating men I’d met online.)
Besides the fact that I find this arbitrary standard inflexible and anachronistic, I also feel it comes down heavily on disabled people, who seem to have an especially large number of online friends. Anyone experiencing loneliness, isolation, and/or a lack of conventional social opportunities can benefit from online social networks. Reducing internet interactions to something pale and second-rate targets a population that is already marginalized. While many disabled people can and do seek social opportunities within their geographical sphere, the internet is an enticingly level playing field where the experience is smoother and the supportive communities are numerous.
My isolated childhood remains a living advertisement for the value of online friends. I was an introspective soul who struggled to make friends in traditionally-accepted ways, so internet social circles were far easier for me to embrace. Online, I didn’t have to be the awkward, introverted blind girl. I could talk to people who were older and wiser than me, share resources with fellow blind peers, and enjoy a sense of social freedom that wasn’t present in my small-town ecosystem. I treasured the offline friends I did make, but rural life didn’t offer the diversity and sense of belonging I found online.
Now, as my life becomes busier and my chronic pain limits my social activities, I appreciate my supportive online network of disabled and non disabled friends more than ever. The love, encouragement, assistance, and companionship they offer are as real and meaningful as anything provided by my equally-adored offline friends. As my heart breaks with the death of an online friend’s husband, and soars with joy at another online friend’s success at work, I do not doubt the gravity and significance of friendships conducted and sustained via the internet.
My internet friends are indeed “real” friends. When they are troubled or grieving or frightened, I comfort them. When I need a friendly ear in the middle of the night, there is always someone to call. My online friends send the best care packages, letters, and virtual (but no less heartfelt) affection. We pay astronomical amounts to visit each other, and make memories we cherish for years. We assist each other financially, emotionally, and spiritually. My online friends may not be able to drive me to an appointment or hold my hand when I’m ill, but they can provide love, advice, compassion, empathy, and laughter.
Never let anyone disparage your online friendships. The internet is a fickle medium, and you may certainly find dangerous, duplicitous people there–people whom you will befriend and later delete from every social network, wondering why you were ever naive enough to trust them. More often than not, you’ll find people who are excellent friendship material–people who will fuse your happiness with theirs and do everything in their power to enrich your life. Whatever people say, however much they scoff, appreciate and cherish the friends you make online, and always measure your relationships in love and respect, not geography and popularity.
Let’s Get This Over With: A Love Story
One year ago today, I met a new friend for a casual evening of food and conversation. We had exchanged several text messages and met a couple of times, but we didn’t know each other very well at all. I assumed him to be a stand-up guy—we had a few mutual friends who vouched for him—but that’s all I knew. When asked by friends and family whether this outing was a date, I protested that I was still grieving over the devastating dissolution of a 4.5-year relationship (absolutely true) and was in no state to be dating anyone, much less a mere acquaintance. As the evening progressed, however, and an innocuous meal turned into an entirely too romantic walk along the river valley (the sun was setting, the atmosphere was intoxicating, we didn’t really have a choice in the matter), I realized, quite abruptly, that this was, indeed, a date.
Uh-oh.
Faced with the prospect of opening myself to a new person so soon after being mistreated by someone else, I began to panic. I couldn’t possibly be ready for this! I had so many problems! My mental health was at one of its lowest points, and that’s saying something. I was perpetually exhausted, (I had new-job syndrome), and was nursing emotional wounds that are still healing. My moods were unpredictable. My emotional landscape felt jagged and chaotic. Most days, it seemed as though I was being held together by threads so frayed and fragile they’d snap at the slightest provocation. I was an undeniable mess—not an appealing or interesting mess, the way a million colours scribbled on a page can be beautiful in their own nonsensical way. No, I was more like the mess you shove hastily into your closet when company comes knocking—the kind you pretend doesn’t exist and continually refuse to sort out because it’s too daunting. If you opened that closet door, you know everything would come tumbling out.
That, dear reader, was the version of me trying to decide whether I was prepared to pursue a new relationship.
Certain that I had stumbled into a misunderstanding and determined to set the record straight, I did what any sensible gal would do on a first date: I sat down on this near-stranger’s couch—and an attractive stranger he was, too—and told him everything that made me undatable.
Yes, that was my first-date strategy: reveal every conceivable shortcoming, cover every awkward topic, explore every taboo, and excavate any past mistakes that would disqualify me as a suitable girlfriend. Lay it all out, get the unpleasantness out of the way, and he’ll balk, right? Surely telling him all about my multiple disabilities, my mental illness, my dubious track record with romantic relationships, my spectacularly poor choices, my insecurities, my unwillingness to ever have children, my overwhelming fear of failure—all of these would definitely scare him off, yes? In the name of honesty, I dredged up everything I could think of that would make him retract his interest so I wouldn’t have to deal with big, scary decisions.
In short, I handed him every reason he’d ever need to call it quits before we’d even begun … as one does.
Those of you who don’t know me very well may think you know where this is going. He was caught off guard, improvised some polite and sympathetic response, and led me gently to his door. When a woman implies, without an ounce of subtlety, that she is a disaster on legs, just thank the universe she’s not wasting more of your time.
Those of you who do know me realize that’s not quite how it happened. Instead, he sat quietly and listened while I gave him my spiel. He asked a few respectful questions, provided the odd empathetic comment here and there, and waited patiently until I was finished.
“So…okay…I’m sorry I dumped all this on you, but I really need to know. I need to know if you can handle all my … stuff. Otherwise, there’s just no point. Anyone I’m with has to be okay with my disabled, chronically ill, foolish self.” (For those of you fuming at my excessively self-deprecating portrayal of disability and chronic illness…just hang on. I’m getting to that.)
“Yeah. Of course. I think it’s great that you told me all this now. It’s brave to tell me, and it’s good information to know.”
As it turns out, not only did this remarkable creature have a disability of his own (moderate and mostly invisible), he was happy to explore romance with someone who had a handful of fairly serious problems, as long as I was willing to be honest about them. Exposing everything in one go, on day one, had the opposite effect you might imagine. Far from deterring him, it encouraged him to trust me and seemed to make me even more attractive to him. With everything on the table from the get-go—and yes, for those wondering, he did reciprocate by telling me many of his own struggles that night—we went into our tenuous relationship knowing there would be few surprises and no unnecessary anxiety about whether we were putting on a good face for each other.
Naturally, there were some who were horrified by what I’d chosen to do.
“You talked about all that stuff on the first date? Were you actually trying to scare him away?”
“Well…yes.”
On the other hand, many others were pleased to hear that my impulsive strategy had worked, and a few even confessed they’d like to try it for themselves, perhaps more gracefully than I had, but with the same unflinching sincerity.
“It would be kind of nice,” some said, “not to have to worry about them ‘finding things out.’” The slow reveal, especially with invisible disabilities and mental illness, can be even scarier than spilling it all out at once.
There was another latent benefit to depositing my life story into the lap of someone loving and respectful: I was reminded, once again, that my disabilities, illness, and various other attributes don’t make me undatable. They may present significant challenges, but they are not objects of shame, ridicule, or guilt. Choosing to date me even with full knowledge of my broad range of atypical challenges was an act of faith, perhaps, but never of charity. My partner wasn’t doing me a favour by agreeing to “handle” these things. I wasn’t “undatable,” and never have been.
Today, as I celebrate my first anniversary with a partner I have come to respect and adore, I appreciate the many ways in which our story could have veered into much darker territory. He could have been repulsed by what I’d disclosed. He could have promised he would handle it and realized that wasn’t a promise he could keep. He could have used the sensitive information I gave him to do me harm. Any number of catastrophes could have resulted from the way I handled our first date. Reeling from exhaustion and pain, I wasn’t in the most stable state of mind, and I fully acknowledge that if I’d been in a better place emotionally, I may have dealt with this differently.
All this has taught me that the recipe for a healthy relationship requires trust and forthrightness from the very beginning. Even if you don’t present your prospective partners with bulleted lists of all your issues—and I don’t generally recommend that you do—it’s essential that you feel comfortable around a person you’re planning to date. Romantic relationships place us in vulnerable positions, and if you don’t think your partner could handle how ill you get during migraines, or how much help you need when trying to identify objects you can’t see, you should keep looking. In the meantime, remember that while there may be many people out there who aren’t right for you, you deserve to find someone who is.
When It Happens To You…
It happened on a bus. I was sitting near my boyfriend, who is not fully sighted but whose vision loss is not noticeable to the average passers-by. An older woman began talking to him, and my mind drifted a little. I was jolted back to earth, though, when I heard her say, quite sweetly, that it was “so nice of [him]to take care of [me].”
There it was.
I knew it would happen sometime, I really did. I’d heard so many stories from other blind people who had sighted partners. I’ve commiserated with them, thinking I knew how it felt because people had made abstract statements of that kind to me. I’ve basically heard it all: you need a husband so he can take care of you; you can’t raise kids or manage daily life without a man; you need to choose a sighted partner so he can keep you safe–and on and on.
It turns out that I was wrong about one crucial element: an abstract statement, no matter how offensive, is far less upsetting than a well-meant but deeply personal one–and it wasn’t even directed at me!
I tried to break it down. After all, I knew this was coming. My previous partner had been totally blind, so we never encountered this situation, but as soon as I began dating my current boyfriend, I expected it. So if I knew it would happen, and had helped so many others bounce back after it happened to them, why couldn’t I anticipate exactly how much it would hurt?
In the end, besides the fact that I am an independent person who takes care of people as often as they care for me, the tone and style of her words were my undoing. This woman thought she was being kind. She simply wanted to commend this nice young man for what she considered exceptional strength of character. Her intentions were pure and I’m certain she did not understand that it might be the wrong thing to say–let alone harmful to the girl in question. I know all this, and yet…
I think it comes down to feeling like an object. The conversation did not include me, strictly speaking. I was not being spoken to, but about. This woman’s casual praise concerned me at least as much as it concerned him, but I don’t believe I was really meant to participate at all except to agree emphatically and gaze at him adoringly for the next few minutes. I was merely the tangible, living example of my partner’s essential goodness and compassion.
Now, he really is a wonderful human being, and sometimes having a blind girlfriend does involve offering a little extra assistance. We travel using sighted guide, for example. Other than a few relatively minor adjustments, we function as any other couple would. My blindness isn’t usually on my mind, and I doubt it’s on his either.
I know this–know it down to my bones–but I still feel insecure, hurt, and embarrassed when someone assumes otherwise. I found this particular incident so unsettling that it took me a few minutes to calm down fully, and I regret to say that I did not respond to her comment with as much grace as I should have. True, I tempered my “I take care of me–he really doesn’t…” with a smile, but I don’t know how effective my attempts to cover my shock and indignation really were.
So, okay, it was a difficult experience. It was humbling, because I thought I could handle such a thing with minimal effort. I believed I was near-impervious to this sort of thing, only because so many fellow disabled people had dealt with it first. What’s the big deal?
Ultimately, this is my takeaway: you cannot know how something will feel until you go through it. Guide dog handlers might be sure of their reaction when they experience their first access refusal, hoping their conviction that it’s wrong will carry them past anger or humiliation. Disabled people who are denied a job based on discrimination can’t know just how painful and frustrating it will be before it actually happens. A student cannot predict their emotional response to being barred from a course because they are deemed unemployable and unteachable until the moment it occurs. I know this, because I’ve been through the last two examples and witnessed numerous people go through the first. My experiences mesh with theirs: it’s easy to empathize; it’s much harder to deal with these situations when they’re directed at you, and only you.
So what can I do? What can we all do?
First off, we can avoid assuming we have such a firm handle on our emotions. We can choose not to claim we know how we will feel until we find out the hard way. We can definitely prepare for the eventuality, and do our best to steel ourselves against what we know we’ll face at some point. Even as we do this, we must be mindful that all that preparation might fly out the window when we need it most.
The more important step is to support other disabled people even more wholeheartedly than we have before. It is not enough to stand by and comfort them. We must avoid minimizing their feelings or pretending we can know what they’re struggling with if we genuinely do not. It may seem like we understand a situation intimately, but there’s just no replacement for first-hand experience.
Going forward, I’ll apply the lessons I learned from this encounter, while continuing to embrace the compassionate view I’ve tried to nurture all along. At the end of the day, I know I must not forget that this sweet woman’s only goal was to praise what she considered to be a small pocket of good in an increasingly dark landscape. She actually went on to say that we made a good couple. She wasn’t trying to hurt anyone, and while I know her viewpoint is wrong and even unhealthy, I can’t change it, not for now. All I can do is move on, let it go, and practice resilience. I hope that, next time it happens, I’ll be ready.
You Should Date A Blind Person, Because…
While some are busy advising us to date sighted people, others are equally busy insisting we date within the blind community. These people are influenced in part by a belief that sighted people are either inferior or superior, and that it’s best for us to stick to our own kind. They think you should date a blind person, because…
A blind person will understand you.
It’s always comforting to have people in your life who “get” you. I’m fortunate to have friends to rant to about inaccessible software and the exorbitant cost of braille displays. It’s hugely cathartic to have heart-to-hearts with other blind people who know where I’m coming from when I talk about the demoralizing aspects of blindness. But…
I have blind friends for that. I can join support groups and forums. Understanding of this sort is not difficult to find, thanks to the internet. I do not need to have a relationship with a blind person to experience this catharsis. While I was romantically involved with a blind man, I found that our blindness had little to do with our success as a couple. Our deep emotional connection was not dependent on our mutual understanding of what it’s like to be blind. It was convenient to be able to complain to him about something and have him understand me on a gut level, but I can go elsewhere for that connection, so it’s not his chief selling point, nor is it mine. Now that I’m with a man who has functional vision, I don’t feel the lack. We’re humans, and sighted people can understand us pretty well.
A blind person will accept you.
It’s certainly true that there’s a lot of prejudice out there. I recently discussed the sighted population’s tendency to reduce us to a fringe group, entirely unsuitable for romantic involvement. So, yes, it’s accurate to say that not all sighted people will accept us as we are. The fear of disability is alive and well.
Not every sighted person is this way, however. In fact, I’d say many sighted people are not this way, especially once they’ve met a few of us and realized we’re pretty normal. While I wouldn’t go so far as to disclose my blindness on a dating profile (opinions vary widely on this point), I know that being blind is not a recipe for a lonely life. It may take sighted partners time to do so, but many of them will eventually accept us.
A blind person will have more in common with you.
This idea usually comes from blind people who have been quite sheltered and have not ventured beyond the blind community enough to feel comfortable on the “outside.” They have somehow confused mutual understanding with general human compatibility, and do not necessarily know what it’s like to have things in common with someone who isn’t exactly like them. Most of my friends were and are sighted, though my network of blind friends and acquaintances has grown considerably in the past few years. While there were situations where they did not understand me, we generally get along like a house on fire because we enjoy the same activities and share some of the same views. A friend and I may not be able to hold long conversations about screen readers, but we can ramble on about various hobbies we both enjoy. One of my oldest and closest friends and I bonded because we were both introverted and both adored books. Another of my oldest friends was introduced to me through a mutual love of musicals. My blind partner and I bonded over a love of literature, a thirst for knowledge, and the same idea of what is absolutely hilarious. My current partner and I enjoy shared values, adventurous spirits, similar senses of humour, and mutual respect for each other and for the wider world. Most of the conversations that take place in my life are not about blindness-specific thoughts. They’re about animals, and books, and music, and education, and human relationships.
A blind person will let you be yourself.
If you’re lucky, any partner you choose will let you be yourself. It’s sort of the point of finding someone to spend your whole life with. You may as well throw your lot in with someone who won’t expect you to live a lie just to please them. The blindness-specific argument usually goes like this: blind people are abnormal by default; blind people cannot control their odd behaviours; blind mates will tolerate this; sighted mates will not. Ergo, blind people should stick to their own kind, so they don’t have to live under constant stress.
Okay, so sometimes being around a sighted person makes me nervous, because I feel scrutinized even when they’re looking the other way. I start to agonize over the way I’m accomplishing various tasks, like cooking, for example, in case I’m being eccentric about it. I now know that this pressure is compounded by choosing a sighted mate, because I want to remain attractive to him. If you’re choosing responsibly, though, you’ll try to find someone who will let you get on with life, and allow you to abandon the quest to appear as normal as possible at all times. Ideally, you’d choose a mate who won’t cringe with embarrassment every time you bring out the cane.
Then we come to the other part of this argument—that blind people are always abnormal and can’t do anything about it. Blindisms, like rocking and hand-flapping, can be difficult impulses to suppress. I was about twelve before I was able to stop eye-pressing altogether. It does take some dedication, for some blind people, anyway. Subscribing to the belief that we can’t rein ourselves in and that we shouldn’t even try is disempowering and blatantly false. I’m not saying that deviating from normative behavior in any way is automatically wrong, but if you want to be part of the larger world, you’re going to have to fit in to at least a small extent. It’s how life works, and sighted people with peculiar habits need to cultivate the same self-control. Dating a blind person so you won’t have to be too normal is a harmful lifestyle choice.
The moral of the story is this: date people because you like and are compatible with them, and not because they have or don’t have a disability. Get it? Got it? Good.
You Should Date A Sighted Person, Because…
Anyone with a love life knows full well how much people enjoy meddling in it. Everyone has an opinion about the ideal mate, and by God, they want you to hear about it. These opinions are sometimes sound enough, but they’re still just opinions, and not necessarily reflective of your needs, preferences, and values.
I, like many blind people, have heard all kinds of opinions about how I ought to manage every aspect of my life, down to which mobility aid I should use and how passionately I should desire a cure. When I began dating my previous partner, who happened to be blind, people were quick to loudly and emphatically express the opinion that I should choose a sighted mate, because…
“A sighted person can take better care of you.”
We begin with the pervasive assumption that blind people can’t take care of ourselves. Some simply mean that we struggle more with everyday tasks (which is often true). They point to the driving issue: wouldn’t it be so nice, they suggest, if your partner could drive you everywhere? They could come pick you up when you get lost, or help you shop so you wouldn’t need to bother the customer service people, or find your keys when you drop them, or walk with you so you don’t get hit by cars.
While some of these arguments might have merit, I don’t particularly need taking care of, at least not to the extent to which I’d need a live-in caretaker. Besides this, I don’t think most sighted people would appreciate a mate who selects them in whole or in part because they could act as caregivers. Even if a sighted person got off on that idea, I’m not interested in being someone’s source of validation. No thanks.
“A sighted person makes more money.”
Okay, so there’s no denying that many, many blind people find ourselves chronically unemployed. The job market is more limited and less welcoming. Despite diversity quotas and affirmative action, it’s still difficult for us to land and keep jobs, even when the economy is booming. So, technically, choosing a sighted mate would mean that at least one of us would have an easier time finding gainful employment. But…
Blind people can still work. We still establish and maintain high-paying, fulfilling careers. We attain the same level of education as sighted counterparts, and are still more than capable of making a living independently.
We’re supposedly past the stage where we believe women ought to have a man so they can be supported financially, so my argument is that, if I can live independently as a single, educated woman, then I can live with a blind guy, whether he is or is not rolling in it. Again, who would want a disabled mate who chose them because of their employment prospects? Seems a little shallow, no?
“A sighted person will keep you normal.”
Blind people, like many other disabled populations, are usually perceived to be alien. Sometimes, we are socially awkward, hesitant, and even a little sheltered. Some of us never outgrow common blindisms, like rocking, eye-pressing, or hand-waving. These are techniques we use to self-stimulate as children, and while some of us left these things far behind as we entered the adult world, others have more difficulty eliminating these habits. Beyond these very specific issues though, blind people are about as normal as any others, but sighted people don’t always believe this. They think of us as having our own little tribe, and encourage us to mix with sighted people to dilute the blindy weirdness as much as possible.
So, the logic follows that, if we date sighted people, we’ll be forced to stay as normal as possible to retain our attractiveness. There will be no room for letting things slide, or sinking to a lower standard of behaviour. Blind people, after all, encourage each other to act strangely, and don’t value normal human interaction, right?
All I’ll say to this is, there are a hell of a lot of strange sighted people in this world, and most of my blind friends are as normal as can be. Besides, I’m capable of befriending someone without adopting their exact lifestyle and mannerisms. So, even if I dated the wackiest blind guy alive, I’d probably be the same, normal-ish Meagan. (Hey, why are you laughing? Stop that. I can be normal! Seriously!)
“A sighted person is more of a catch.”
So, so many people are under the impression that I was settling by choosing a blind mate. I chose him because he was attractive and compatible with me; I did not settle for less by dating him. Sighted people are not better mates by default, even if they do have an easier time getting a job and are able to drive me to an unfamiliar place. My current partner, who is closer to being fully sighted than he isn’t, is also attractive and compatible with me. I selected him for the same reasons as my blind ex, and benefit far more from his sweet disposition and kind personality than from the various perks his vision can offer me. My relationship with a blind mate failed for reasons independent of disability, and my current relationship thrives for reasons unrelated to my mate’s sight.
If you liked this post, drop by next week for its companion piece, in which I discuss the reasons we should only date fellow blind people (and why they’re totally ridiculous).
No Sex Please: We’re Disabled
When I was about fifteen or so, I was scrolling through some disability-related books, not paying much attention to most of them. I became very alert, however, when I stumbled across a book (whose title escapes me) about society’s puritanical de-sexualization of wheelchair users. The book also delved into the experiences of other physically disabled populations, exploring the myth that we are not and do not want to be sexual creatures. This was a new idea to me, or so I thought. But, as I continued to read, I realized it wasn’t new at all.
I cast my mind back to a family trip to Mexico when I was about thirteen. This is well past the age when girls generally become convinced that kissing someone would be more fun than icky, and I was experiencing a tame awakening of my own around that time. As my sister and I walked down the sidewalks, with our elaborately braided hair and colourful bathing suits, the eyes of nearly everyone slid over me completely, or opened wide in fascination as they noticed the long white cane—that conspicuous symbol of otherness. These wide-eyed stares came from all genders, and I remember several people running back the way they’d come just so they could get a better look! (My sister and I joked that people should forget about taking pictures with monkeys and take pictures with me, for a fee, naturally.) If you’ve got it … flaunt it, I guess?
Now, if I was as stunning as my sister, it may have made a difference in the way people looked at me, but I’m not convinced of that. People tend not to actually see visibly disabled people, unless they’re gawking, that is. Beyond making us feel like monkeys ourselves, it can also seriously stunt our love lives.
I’ve talked about feeling like I wasn’t a real girl, and how I’m only just discovering that I’m satisfactory the way I am. That does not mean, though, that the rest of society has caught up with me. All throughout grade school, only other blind people showed any interest in me at all, and they could only communicate with me via the internet or telephone. (Most of them were as desperately lonely as I was, so I didn’t put much stock in their judgement.) I’m sure many sighted people didn’t flirt or approach me at all because they simply weren’t interested; that’s not a big deal. You can’t be everyone’s cup of tea. I am quite sure, however, that many boys I grew up with simply didn’t consider me based on my broken eyes, even if they did so unconsciously. There were girls, and then there was Meagan: normal enough to be friends with, but too alien to date.
Once I started talking to other disabled people about this, I discovered that they, too, were often rejected outright because of their disabilities, with people only realizing how attractive disabled people can be once they could get past their discomfort (assuming they ever did). If I put my cane out of sight and manage not to bump into walls, I don’t look blind, and I’m told that people actually look at me differently. Suddenly, I’m a human–a young woman who is potentially attractive to at least one soul out there somewhere. As soon as that cane comes out, though, I’m reduced to an asexual, undesirable creature who is off limits to everyone, romantically speaking anyway.
The worst bit is that some people apparently believe we want it this way! They believe that we wouldn’t want to become romantically involved, or that we don’t like or can’t enjoy sex. I can understand the confusion when it comes to severe cases of paralysis, though people need to do their research and be more open-minded even then, but it baffles me that someone whose body is in fine working order would still be de-sexualized. Even those whose bodies aren’t up to statistical standards of normality should not be ruled out; you’ll just have to get creative. Aside from all this, a disability should never rule someone out as a potential romantic partner right off the bat, based solely on the idea that they’re not datable. Judge them by their personalities, general physical traits, outlooks on life, and all the other attributes you’d evaluate in any able-bodied mate. Preferences are fine, but ignorance is not. We’re not children, and we’re definitely not puritans by design.
Next time you see a pretty girl in a wheelchair, go talk to her. Next time you meet an attractive blind guy, go have a chat. Next time you encounter someone with a disability who appeals to you, assume they’re a viable option until you discover otherwise. Finally, never, ever write them off as disinterested by default. How can you know until you try?
Where's Your Dog? 