ambassadorship and representation

Happy, Capable, Aggressively Okay

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

My Best, Most Exhausting Self

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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 artless 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’ve moved 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 develop such things? 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 them. 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 ideal self never existed. 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.

Finding Your Hive: Longing for Usefulness as a Disabled Worker Bee

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Over the past few years, I’ve been focusing less on sheer survival and more on living in a way that brings me lasting contentment. Common wisdom for such a pursuit most often begins with ‘find your tribe’ sentiments.

Said wisdom did seem to be working well for most everyone I knew. Each time a friend picked up a hobby or clicked with a social group, their general happiness seemed to improve tenfold. Then there was me: phenomenal friends, supportive coworkers, closely knit family, thriving romantic partnership. My social life was thriving for the first time since high school, and loneliness had become something other people suffered. I was even beginning to explore creative hobbies after too much time spent in stagnation. My writing showed promise, and music, that stalwart friend, was a central part of my life again.

So where was the life improvement squad? Where was the revelatory sense of purpose? Where was the click?

Maybe I was supposed to order it. Maybe I’d have to go online and fill out some form and half the fields would be unlabelled and everything would be colour-coded and then the CAPTCHA verification would be inaccessible and maybe I should just have a nap?

Anyway, just as I accepted my destiny as incorrigible malcontent, I found a comfortable niche at a new job. The work I do offers abundant opportunity for individual accomplishment, but there is also a lot of work that’s unglamourous, uncredited and, therefore, quite unpopular. It needs done, and when it’s done well it brings enormous value to the team, but no one likes doing it.

Well, no one but me.

Once I developed a widespread reputation for being the person who’s up for anything, always willing to embrace the ‘hard’ in ‘hard work,’ I felt it — my resounding click. I was useful, and that was just what I’d been looking for.

You see, like many rural kids, I grew up in a culture obsessed with usefulness. There was always work to do, and if there wasn’t, you weren’t looking hard enough. All around me, my sighted peers were making themselves useful mowing acres of grass, feeding livestock, doing renovations, operating farm equipment, changing someone’s oil. You name it, someone my age was doing it.

As for me, I could usually be found unloading the dishwasher or doing laundry while everyone else rushed about doing things I was too blind to tackle. In an environment like mine, if you couldn’t drive, couldn’t see, couldn’t learn purely by observation (no one had time for adapted training, even if they’d known how to carry it out), there was no sugar-coating it: you weren’t of much use. I know plenty of rural blind people learn most of these things by grit or gumption or good, patient teaching—see you in the comments, guys, keep it civil—but for reasons that are numerous and complicated and not at all relevant here, I didn’t.

So, in effect, I spent my formative years knowing I was not very useful, while up to my eyeballs in a culture devoted to utility. As you can guess, that understanding sank deep into my marrow and helped forge who I’d become: A restless, rudderless person who couldn’t work out what would make her truly happy.

Being academically inclined was nice. Being reasonably intelligent was handy enough; that would help me make money later, maybe. My singing brought others joy, even if it wasn’t going to babysit their kids or cook their dinners. But I felt like a defective worker bee in a very busy hive, and no one seemed to know what to do with me.

It took me way too long to realize what I need for true contentment is less ‘find your tribe’ than ‘find your hive’. I’m not wired for attention and I’m not especially motivated by approval. I like working with other people, but community, important as it is, doesn’t fulfill me on its own. As it turns out, finding my people is my nice-to-have, not my must-have. What I hunger for isn’t attention, recognition, or a group of people who ‘get’ me, though I won’t say no to them. Instead, I am the ultimate team player, totally invested in a job well done. I want to have your back, not take your limelight. I want you to notice me for my dependability, not so much for my brilliance, though again: I won’t say no to that either. If I’m competing with anyone besides myself, it’s to see who is most helpful, not who is most impressive. I hunger for the knowledge that because I’m around, doing my best work, someone else’s life is easier.

I wonder, as I write this, whether other disabled people have the same worker bee drive. Plenty of nondisabled people crave this sort of external validation, of course, but I have a feeling there are a lot of disabled people out there who, having been labelled ‘of little use,’ have grown into restless, rudderless people like me, asking themselves why they never feel whole unless others are counting on them.

And I’m sure there are many more out there who have yet to feel useful, at least by society’s narrow standards. Isn’t most disability defined, after all, by the work a person can or can’t do? By our earning potential? By our limited ability to contribute financially via the labour market? Don’t so many of us find that the only thing worse than a bad job is no job at all? Beyond financial constraints, what would unemployment say about us and our worth?

I think you’re out there, worker bees. I think you’re worried about whether you’ll ever be useful enough, and I think you find meaning in what you manage to get done. I believe you have mixed feelings about the fact that the toxic mentality that made you feel small and inadequate is giving you such fulfillment. I expect you live to hear people say, “you really helped me out today,” and I’d bet some part of you balks at the very thought of being so vulnerable to how others feel about you.

If I were to guess, I’d say you might even question whether enjoying your usefulness demonstrates a lack of self-respect, a brokenness, an internalized ableism you can’t quite shake.

Am I getting warmer?

So if you’re out there, worker bees, I propose the middle ground, as I so often do. Delight in your usefulness. Find the niche that lets you be a go-to person, even if it’s for something simple. Relish it without apology.

Yes, our society is obsessed with measuring the utility of human beings and punishing or rewarding them accordingly. Yes, that obsession is more pronounced and more damaging when those humans happen to be disabled. But don’t let that deprive you of the pride and fulfillment you derive from your ordinary, unglamourous work. Don’t chase admiration simply because someone told you that the only good disabled person is an outstanding one. Most importantly, don’t you ever buy in, the way I did, to the idea that your value lies in how well you stack up next to nondisabled people. That way lies madness. Life doesn’t have to be a competition. The unremarkable, uncredited tasks you perform every day have weight. All you have to be is the best version of yourself.

Go, worker bee, and find your hive. And when you do, take what brings you happiness and leave the rest.

Guest Post by Elise Johnston: Guide Dog Gaps and Anxious Hopes

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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.”

Forget Sorry: No is the Hardest Word

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Saying no is hard. Luckily for those of us who hate to make waves, there are reams of advice out there about saying no on a date, at work, at holiday events, and in tough situations with family and friends.

Creating boundaries is uncomfortable, and enforcing them is worse. Nevertheless, I believe that many of us are getting better at doing both, despite people’s general inability to handle it gracefully.

The one area of my life where I feel that ‘just say no’ is punished more often than rewarded, even by those who profess to respect boundaries, is—you guessed it, clever reader—disability. I know in my heart that it’s better for my health, my safety, and my peace of mind if I say no to all kinds of things: unwanted help, condescending praise, unsolicited charity, events that worsen my chronic pain, exploitive volunteer opportunities, intrusive personal questions, etc. (I could go on for a long time. I’ll spare you.)

And yet in this, the year of our Lord 2019, it is still controversial, inflammatory even, for my disabled friends and me to say no to any of these things. When we do, we have to deal with a whole lot of anger, hurt, wounded pride, and bitterness, plenty of it from people who have power over us, and plenty more of it from fellow disabled people who enjoy sabotaging others’ autonomy almost as much as their own. Because of course.

Let me show you what I mean with a few comparisons. Comparisons are fun!

Saying no to unwanted touch on a rough first date? Scary, but empowering. Saying no to the person physically dragging you along because he thinks you really, really need help walking through that doorway? Ungrateful.

Saying no to the grandparents who want to load your kids with sugar? Awkward, but that’s just responsible parenting. Saying no to the relative who won’t stop feeding your service dog? That’s just a major overreaction.

Saying no to the free sample, the donation box, the religious pamphlet being offered by a stranger on the street corner? Totally your call. Saying no to the gifts, money, prayers, advice, weird coupons and assorted pity offerings from strangers on that same street corner? Totally uncalled for.

Saying no to the private company that wants your free labour in exchange for “exposure?” Gutsy; you deserve to get paid for your hard work. Saying no to the private company that wants your free labour because your identity provides the illusion of “diversity?” A disservice to the disability community; you should be grateful just to be noticed.

It didn’t take long for me to learn, as a multiply-disabled person, that like so many other marginalized groups, ‘no’ is not for disabled people. ‘No’ is not for people who want help in the future. ‘No’ is not for those who need to rely on people who hurt them. ‘No’ is not for the vulnerable. ‘No’ is not for those needing accommodations or assistance or a hand up. There is only ‘yes,’ and ‘thank you,’ and ‘thank you again!’ Anything else risks anger, risks strained relationships, risks exasperating conversations about ‘humouring’ people and ‘making them feel useful’ and not turning boundary violations into a ‘whole big thing.’

Do we routinely take these risks? Most of us do, yep. Is it exhausting, demoralizing and sometimes dangerous? You bet.

I’ve learned to live with almost every ‘no’ being met with questions like, “Why can’t you just keep the peace? Why can’t you just let them help? They’re just curious—why are you being so rude? Why can’t you suck it up? Why can’t you just be nice?”

Because, you know, being nice comes naturally when a stranger has his arm around my waist and is brazenly ignoring my ‘no, my ‘I’ve got this, thanks’, my ‘please let go, my ‘seriously—let go of me immediately.’ Niceness begets niceness, clearly.

So here are my questions, which will look familiar, no doubt:

  • Why can’t the person who is tugging on my arm be nice and keep their hands to themselves?
  • Why is a stranger asking me personal questions about how long I’ve been disabled, and what happened to me, and how on earth I manage? Why can’t they rein in their curiosity and stop being so rude?
  • Why can’t the person whose request for free work I just turned down stop making it into ‘a whole big thing?’
  • Why can’t the person petting, feeding, distracting my friend’s service dog suck it up and follow the rules?
  • Why can’t the person telling me I shouldn’t work, shouldn’t leave the house, shouldn’t participate in public space just keep the peace and leave me alone?
  • Why isn’t no enough?

If you ever find the answers, heaven knows my inbox is open. Until then, I’ll keep saying no, (often politely!), keep setting those boundaries, keep trying to change this toxic double standard we’ve all helped to create by being so doggedly nice, even when someone is harming us – especially when someone is harming us. I hope you’ll do the same.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I Don’t Want You to be Grateful

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

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

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

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

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

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

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

The World is a China Shop (but I am not a Bull)

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One of my earliest memories is of committing, as many people call them, a random act of blindness. I was navigating one of those stores not designed for most humans. You know the ones: narrow aisles, delicate displays, teetering piles of items just begging to be toppled. My cane bumped something made of glass, which promptly shattered with what I felt was an unnecessary amount of drama. Immediately, my parents began apologizing as a staff member swooped down on us, sweeping up the pieces and saying very little. Maybe it was my parents’ reflexive need to apologize for my blindness, rather than focusing on the actual damage done, or the woman’s tight-lipped refusal to reassure, but the shame was instant and pervasive. Even as a very young child, I knew enough to realize I’d done a terrible thing, well beyond the realm of typical childlike troublemaking. I had drawn attention to myself and my fundamental differences. I had not been careless, though I’d certainly broken things for that reason before. I was not touching objects I shouldn’t, nor was I being especially rowdy. In fact, I was doing my best not to brush up against anything at all, aware that we were in a sacred-seeming place where impeccable behaviour was paramount. This had happened because I couldn’t see; because I was different; because I couldn’t control my impact on the world as rigidly as other kids could.

As I grew, I witnessed enough nondisabled people knocking things over and making messes to learn that what I’d done in that cluttered store was very human and very normal. All around me, people spill food and knock over their drinks. When they cook, food splatters. When they go into a badly designed store, they displace items just by walking past them. How many times have I stepped carefully around messes while out and about? It happens. People make mistakes. The world is an unpredictable place that is rarely designed for the maximum comfort of its population. Clear paths and barrier-free environments don’t seem very common, even though everyone would benefit from them. We are all living in a china shop, and we are all of us bulls at some point.

And yet, concerned strangers continue to treat me with fear–not only for my safety, but for theirs.

“Watch what you’re doing with that cane.”

“Are you gonna hit me with that thing?”

“Hold on, hold on, I’ll get out of your way!”

If you want to make someone feel like a cross between a fragile doll and a rampaging rhinoceros, say things like that. Bonus points if there’s a child involved.

The shame persists. I knocked over a plant at work this morning, which was perched on a window ledge. A casual sweep of my hand wasn’t enough to locate the obstacle, and when I set my backpack on the ledge, as I do at least once a week, the plant fell to the floor, pieces of its wooden stand skittering noisily into a corner. The whole affair was loud and humiliating, , and when I told a fellow blind friend about it, she shared my disproportionate shame.

“So I knocked over a plant this morning. I committed plantslaughter!”

“Noooo! Not plantslaughter! I think I would have died of embarrassment.”

“Had death been an option I might have considered it at that moment.”

Of course making messes and destroying someone else’s belongings is embarrassing. I think most people would find it so. Few would walk away from such an incident without feeling a twinge of guilt.

But as I poured myself a coffee, reassured that the plant would survive, that old familiar shame returned. I was a bad, careless blind person. My colleagues would think I couldn’t be trusted. I should have double and triple-checked that window ledge. How would I ever be taken seriously if I carried on this way?

Clumsy.

Awkward.

Unprofessional.

At some point, my more rational side piped up: wasn’t I being a wee bit hard on myself here? Was all this self-flagellation appropriate? I knocked over a plant, which wasn’t supposed to be there anyway. I didn’t harm anyone, or murder a puppy. I knocked over a precariously positioned object, I apologized, and I got the mess taken care of right away. I apologized some more. How was this situation different from when nondisabled people knock something over?

It wasn’t. Perhaps a sighted person would have seen the plant and been more careful, but perhaps they would have missed it in the dimly lit room, or been too distracted to notice. The absence of disability is no perfect shield against mistakes, and sighted people are not inherently graceful. If anything, I am slightly more cautious than the average person because I know that any error I do make may be misinterpreted. White canes and service dogs are sometimes identified as health and safety issues, which functionally means that the person using them is also a health and safety issue. Someone to be feared. Someone to be planned for. Someone to be managed.

I will never be comfortable with making a mess—social anxiety will make sure of that. I don’t enjoy disrupting my environment and I’ll always connect such disruptions, at least tangentially, with my disability. I will probably always apologize a little too profusely.

Next time it happens, though—and it will happen—I’ll think back to this moment, where I realized that I was making afar larger fuss than anyone around me. My unwarranted reaction, far from doing damage control, made it more likely that someone would alter their view of my professionalism and competence. Better to simply apologize, take care of the mess, and give myself the same grace I so easily give to everyone else.

I hope you will think back to this, too, and I hope you will give yourself a little grace.

We, the Persons

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It happens more often than you’d think. I’m scrolling through a piece of writing relating to policy or human rights, and I see it: “persons with disabilities.” It’s not something I find in much mainstream writing, but in the non-profit and government worlds, it’s ubiquitous. Though I’ve come to expect it, it always stands out to me in the most distracting way. It conjures other phrases, like “persons unknown” or “persons of interest.” It’s clinical and cold. It feels archaic and, especially outside the context of law, dehumanizing.

It seems like everyone else gets to hang out at what passes for the cool table, under the “people” umbrella. (Boy, that bar is high.) We don’t typically talk about persons of colour, or LGBTQ+ persons, or persons with low incomes. Governments don’t commit to supporting “working persons.” Politicians don’t address the “persons of this great country.” Democracy is not “by the persons, for the persons.” That would sound odd, if not incorrect. At best, it would be out of place, and give people pause.

I’m not usually a splitter of hairs when it comes to small linguistic details, unless I’m wearing my editor’s hat. I tend to think that while language has immense power, the sky isn’t likely to fall if someone refers to me as, say, “visually disabled” versus “visually impaired.” I may have a preference, but it’s a personal one, unlikely to inspire whole blog posts. You say tomato, I say “Who cares?”

There is something about “persons with disabilities” that continues to annoy, no matter how many times I come across it. Unearthing the phrase buried in legislation is one thing, but when I see it in a recent piece of writing, I can’t help but shake my head. Why haven’t we joined everyone else? Why have we yet to gain full “people” status? Why are we still being referenced, in a surprising number of documents, using a term that is jarring and isolating for no good reason? Are we destined always to remain in a medicalized category of our own, somewhere just to the south of “people?”

It really is a very minor detail, I know. Most people will look at “persons with disabilities” and not even notice the strangeness of it. Others will notice, and not care. I’m sure many people with disabilities (see what I did there?) will read this and shrug. There are bigger fish to fry, certainly–more important quibbles to discuss, definitely.

But my favourite thing about minor details is that they are so simple to fix. The complex issues are hard to solve, and I’m in no position to do much about any of them. What I can do is make sure “persons with disabilities” never creeps into my own writing. I can encourage my clients and coworkers to start thinking of us, and representing us, as a group of people much like every other. I can point out how bizarre it is to cling to such an outdated term, and hope that it will one day become a rare one.

If you’d like to see “persons” with disabilities become a relic of a society that really did view disabled people as less-than, instead of a phrase we cling to with bewildering obstinacy, you might consider joining me in this modest quest. I’d be more than happy to hear about your progress, pushback and all.

The Blind Girl Who Sings

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In her memoir, Hourglass, Dani Shapiro writes about a “third thing” that all married couples should have in order to live happily together long-term. The first thing is you, the second thing is your spouse, and the third thing is the external glue that unites you. It could be a common taste in music, or the process of raising your children, or a mutual love of the outdoors. Whatever it might be, you need a third thing to give your relationship shape. And, as I read about this concept, I realized that music is the “third thing” in my relationship with myself. There’s me (first thing), disability (second thing), and music (that essential third thing).

I’m a complete nobody, but while I was growing up, I had a modest musical reputation. Rural surroundings made it easier to stand out, and my family’s love of music was all the encouragement I needed. One of my earliest memories is picking out “Mary had a Little Lamb” on my grandmother’s piano, refusing offers of help with growing stubbornness. At five, I was singing publicly. By the time I left home for university at seventeen, I had sung competitively for eleven years, and was a common figure at local fundraisers, funerals, weddings, and other community events. I’d never be Idol material, perhaps, but I was dependable and versatile, occasionally bringing crowds to their feet. Sometimes, I’d even win competitions. It was enough.

Once I began studying communications and preparing for a career centred more on writing than music, I let much of my talent go dormant. I still sang to myself constantly—to the dismay of my roommates, I’m sure—and found the time to sing with friends and perform at the occasional family funeral or wedding. I had shifted gears dramatically, releasing my careful posture and letting my exceptional lung capacity deteriorate. Music seemed to have no fixed place in my new reality, and city living meant that if I’d wanted to claw my way back up to where I’d been, I’d have to fight for it. Stressed as I was by academic pressure, chronic pain, and mental health struggles, I didn’t have that fight in me. I focused on writing, sang exclusively for fun, and made noises about joining a choir someday. Two years have passed since my graduation, and serious musical pursuits are still at the bottom of my to-do list.

Though I’m occupied with other things, I miss being a singer every day. I miss it for the obvious reasons: the rush of performing for an enthusiastic crowd; the joy of learning new and challenging pieces; the grind of endless rehearsals that somehow turn into effortless beauty when you’re looking the other way. I miss dressing up and connecting with strangers and congratulating fellow musicians. It could be gruelling, but I miss it dearly.

There’s another dimension to my longing: music was my conduit to a life less defined by disability. People often thought of me as “that blind girl who sings,” it’s true, and many of them waffled on about my vocal gift being divine compensation for my undesirable eyes. Even so, while I was singing, I wasn’t thinking about cane technique or traffic patterns. When people flocked to me after a performance to tell me my voice had meant something to them, no one was dwelling excessively on my broken eyes. If someone reached out to touch me as I passed, it was out of a desire to express something more positive than “You’re going the wrong way! I must save you!” Adjudicators were mostly impartial, occasionally referencing my lack of eye contact with audiences but otherwise more interested in what I sounded like than what I looked like on stage. With a few exceptions, I was judged for my talent, hard work, and emotional expression. Nobody who watched me earn a standing ovation with “Don’t Cry for Me, Argentina” was likely to label me incompetent, graceless, or pitiable. Music, especially in the minor leagues, was as close to meritocracy as I was ever going to experience, and I had no idea how valuable it was until I had to live without it.

The musically-talented blind person is a narrative with which society is comfortable and familiar. Few people questioned my right to inhabit that world. My “We’re not in Kansas anymore!” moment came in a rhetoric class, a couple of years in to my communications degree. I was unpacking my laptop, lost in thought, when a student I’d never spoken to before approached me.

“Why are you here?”

The question came with no bark on it. It wasn’t hostile, but there was a straightforwardness to it that made it shocking. Immediately, other students began to gather around, wondering how this would unfold.

“I’m in this course, so…”

“Right,” he continued, “but why are you here? In university?”

“I’m taking the Bachelor of Communication Studies program, and this class is one of the option courses.”

“I know, but blind people can’t be writers.”

It dawned on me that I didn’t have to participate in this bizarre conversation. I was being baited, or insulted, or something. Being a dedicated glutton for punishment, I responded.

“Of course we can be writers.”

“But how?”

By now, he was starting to sound genuinely curious. Receptive, even?

“Well, I use a computer, like everyone else…”

A few other students pressed closer, making disapproving noises. The student continued, sounding defensive.

“Well, I’m not up on all the technology…”

Clearly not.

Class began at that moment, interrupting one of the most unsettling conversations I’d ever had. As the instructor introduced the course outline, I realized, all at once, that I was back at square one, back to proving myself, back to basics in the worst way. Blind communications professionals made less sense to people than blind musicians, it seemed, and I had never felt more disabled. The student and I eventually became friendly, and I’ve since learned that the blunt approach I found so off-putting is simply part of his communication style, but he reminded me, whether intentionally or not, that I must always be ready, at a moment’s notice, to explain my place in the world.

The oft-repeated observation about minorities needing to work harder, shine brighter, climb higher than everyone else just to be regarded half as talented still holds true. Being disabled is a little less demoralizing when you have some talent or skill that helps you stand out for something other than your disability. If your reputation as a singer or designer or writer or chef becomes more powerful than your reputation as the weird girl with the stick, or the weird guy with the wheelchair, you’re winning. The trick is to train people to see your brilliance before they see your supposed deficiencies. Distract them with your finer points, and maybe they’ll forget about all the ways you don’t fit in.

There’s plenty of bitterness buried in this truth, but I’ve found a way to put a more encouraging spin on it. Instead of looking upon music as the only part of my life that made much sense, I choose to view it as a valuable skillset that set me up for greater success in other facets of my life. All those public performances have cured me of paralyzing stage fright. Public speaking doesn’t scare me, and thriving under pressure comes more naturally than working in slow-paced, gentle environments. Musicianship expanded my social circle, increased my confidence, and helped me shape my identity outside of the box marked “blind.” I may have been the “blind girl who sang” to most of my community, but that’s still better than simply being “the blind girl.” Now, I can be “the blind girl who writes,” or “the blind girl who edits,” or, you know, “another disabled human trying to live her life.” I’m happy enough in all of those boxes.

I hope every disabled child has the opportunity to find their third thing. Maybe, like me, they’ll discover fourth and fifth and sixth things, just to keep life interesting. These days, writing and editing have become almost as essential to my identity as music.

Discover that third thing. Give your relationship with yourself shape and definition. Allow others to see past the cane, or dog, or walker, or their own perceptions. Do it for yourself, primarily, and watch as other people begin to notice you in ways far more pleasant than “Hey! There’s that disabled person I always see at the bus stop!” Perhaps you’ll master that third thing to the point of renown, or perhaps you’ll choose to embrace it quietly. You do you.

Wherever your journey takes you, find your third thing, and be seen.