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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.”

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.

Enough With the Sick Day Humblebrags

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All my life, I’ve been surrounded—some might say afflicted—by troupers. You know the type: they can work through anything, raging fevers and hacking coughs be damned. Industriousness in the face of illness is a point of pride, and rest is for other, presumably weaker, people. Their insistence on being out and about when they’re contagious does cause some cringing from those around them, but discreet disapproval is nothing to a long-time trouper.

The trouper’s crowning achievement? They haven’t taken a sick day in ten, twenty, thirty years. Perhaps they did, once, but it was life or death, so that’s forgivable—just barely.

I’ve sat self-consciously among these trouper types, growing progressively guiltier as they list the ailments that didn’t stand between them and their work. Shifting restlessly, I’ve listened to them condemn people who choose to take sick days, trading anecdotes about rampant abusers of the system. I’ve begged the universe to disperse my atoms as they called for bonuses that would reward employees for refusing to use their allotted sick leave. No one stopped to consider what that might mean for people like me, even as I sat in their midst. Most irksome of all, no one stopped to admit that not needing sick days said less about their work ethic and more about the privilege of a healthy body—something many of them took for granted.

The idea that we shouldn’t come to work sick is gaining ground, though it’s cold comfort for people who don’t have the privilege of paid sick leave. Employees are encouraged not to expose their colleagues to contagious illnesses, and sick day guilt is finally being acknowledged as a mainstream issue. Doctors are calling for an end to sick notes, citing the valuable time wasted, the germs needlessly spread to vulnerable patients, and the hefty bills employees and students with common colds are left to pay. (A few months ago, my poor partner paid $40 for a sick note.) As a student whose migraines were not well-managed, I dragged myself to walk-in clinics and hospitals when I should have been at home, resting and suffering in peace. I, too, have paid pretty pennies for slips of paper that declared what I already knew: I had a migraine, and I needed bedrest. Hoops must be jumped through, and HR departments must be appeased, but that doesn’t make the system sensible.

Sick day guilt persists. Employees who should be resting will sometimes work remotely. They take calls when they should be sleeping, or answer emails from a doctor’s waiting room. People lucky enough to have access to paid sick time still have concerns about job security, workloads, and cover-offs. Despite cultural acceptance of self-care and work-life balance, feeling terrible about staying home is practically a cliché. Even when employers actively encourage time off, many employees–and I include myself among them–feel more comfortable toughing it out.

Aside from the usual bugs that strike everyone each winter, I deal with chronic pain in my neck, shoulders, and back. The pain typically manifests as nagging headaches, stiffness, and muscle aches. Occasionally, nausea, watering eyes, and disorientation will join in, making it difficult to focus. When the pain peaks, which isn’t often, thank goodness, I struggle to find words, concentrate, and even orient myself physically. Spurred by sick day guilt, I have insisted on working during those severe pain days, even when it meant bouncing off doorways or making silly errors. Anyone with sense could see I ought to be resting, not working, but growing up around all those proud troupers had left a powerful impression.

I hit my lowest point while working a summer job. A combination of emotional stressors and a new medication made my migraines spike, and I woke one morning with a leaden feeling of wrongness throughout my entire body. I got on the bus, limbs tingling, and realized I was getting yet another migraine. I crossed a busy intersection to access my office building, but was so dizzy I couldn’t identify which way was forward. When I tried to climb the steps into the reception area, my feet failed to make the appropriate motions, and I fell. Twice.

When I got to my office, I immediately began working, hoping I’d be able to make it through the day. By the time a colleague found me an hour later, I was draped over my desk, green and shaking. While a kind stranger drove me home, a bucket cradled in my lap, I understood that if I didn’t change, I’d be unable to work at all. An emergency hospital visit a few days later confirmed it: the guilt was unsustainable, and so was the trouper mentality.

Nowadays, I manage my pain much more consciously. I have several coping mechanisms I can use while at work, and I know how to ask coworkers for help and support. I take care of myself at home so I can function well at my job, and take the odd sick day without too much dithering about whether I deserve the time. This approach has meant I suffer less pain in the first place, and manage it more successfully when it does come along. My current work environment is a balanced one, and when I go several weeks without a severe pain episode, I feel lucky, not proud. I am not special for not needing sick days as often as some other coworkers do, and I know it.

Abandon the sick day humblebrags, and recognize that illness is not a moral failing. Avoid bringing that nasty flu into the workplace unless you’re positive your coworkers can’t get along without you. Stay home when you can, and strive for real, lasting recovery. If people take sick days around you, reserve judgment. Don’t treat your lack of need for sick leave like a badge of honour. If you have the option of taking paid sick time, coming to work when you’re unwell means you are either very stubborn or very dedicated. It doesn’t necessarily place you above your colleagues.

We’ll all have days when we feel as though taking a day of rest is not an option. We have too much to do. People are depending on us to be present, and we’re confident we can handle the discomfort. I’ve been there, and I’ll be there again. I’m not going to miss a file audit meeting or workshop because my pain is a bit worse than usual. It’s okay to be a trouper, at least some of the time.

But, as we overcome physical limitations to be present, let’s do so with the awareness that staying home is a valid choice, too. Let’s acknowledge there will always be those who abuse the system, without demanding that everyone lose out because of a few bad apples. Let’s stop expecting people to be impressed by a sparkling attendance record. Let’s shift our focus to performance and productivity.

Oh, and let’s take a crack at conquering that sick day guilt. Health is not a sign of strength, and illness is not a sign of weakness.

Better Living Through Severed Shoestrings

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“Money doesn’t grow on trees, you know,” played on repeat throughout my time in public school. I was better off than many blind students, since my school division rarely hesitated to fund what I needed, and my educational assistant’s skill far exceeded her salary. Despite this relative abundance, I was never permitted to forget how lucky I was to receive basic educational tools. Fellow classmates were forever losing or damaging their books and equipment, while I was reprimanded for so much as bending a binder. I was threatened with a $700 fine for misplacing one volume of a Braille book. If a piece of expensive equipment malfunctioned—usually because I had not received the most rudimentary lessons on how to use it—I was held solely responsible, my attempts to explain myself summarily dismissed. Almost nothing I used belonged to me, so a broken coil or missing stack of Braille paper was grounds for outright hysteria. In fact, my first panic attack was triggered by a problem with my school-issued laptop. It had been drilled into me by a few overzealous adults that I could either be a faultless steward of my assistive technology, or I could surrender the right to have any at all. Panic seemed warranted.

University was a welcome reprieve. Generous grants and scholarships covered all my equipment. There was an expectation that I’d take care of my technology to a reasonable extent, but no one was hanging over my shoulder, evaluating the way I carried my Braille display. Grant money wasn’t unlimited, so I still had to be cautious, and when something broke down, there was no guarantee I could afford to repair it. For those fortunate enough to be uninitiated, specialized technology seems to break down a lot.

Then, as if to cement this shoestring pattern, I started working in the nonprofit sector. Anyone who has worked in nonprofit organizations for any length of time knows that you can’t assume you’ll have reliable access to stamps and functional phone systems, let alone costly assistive devices and software. Funding is available for Albertan employers, but I had already developed the habit of accomplishing all tasks with bare-bones resources. Years of living on the disability shoestring meant I was a convenient employee, but not necessarily an optimal one. In the disability world, you often get what you pay for, and the nonprofit tendency to use no or low-cost alternatives to standard products spurred me to avoid asking for anything at all unless my job depended on it. My employer checked in periodically to make sure I didn’t need anything new, but I insisted I was just fine, thanks. Again and again, I chose the long, winding path to every goal—whether at work or in my personal life–because it meant conserving other people’s money and time. What could be more important than that?

Recently, I switched to a position in which employees are expected to make any reasonable request that will increase their productivity. Nothing is promised, but much is delivered, and my shoestring habits are neither lauded nor useful. Profligacy isn’t encouraged, but neither am I praised for taking hours to perform simple tasks just because I used a cheaper option, or refused to ask for help, or failed to request an accommodation. In my new environment, resources are plentiful, and I’ve had to do major soul-searching to become comfortable with that.

It has taken me years to pinpoint why I find the hard way so easy. The trouble with the shoestring lifestyle is that while it’s not enjoyable, it’s comforting. If no one can accuse you of being a drag on the system because of those dreaded “special needs” of yours, you can indulge in self-righteous piety. Doing everything the difficult but economical way is a bulwark against societal pressure to take as little from a harsh world as you can. I convinced myself I had to earn my right to work, which meant ensuring that no employer or disabled peer could view me as financially burdensome. Amid all my anxiety about costing too much or needing too much help, I forgot that employers are typically more attached to excellence and efficiency than economy. If I proved to be valuable and competent, employers would find ways to accommodate me. On the other hand, if I cost them next to nothing but lagged in terms of productivity, they’d be well within their rights to trade me in.

A lawyer friend said it best: “A good dose of get-sh*t-done is important, but time is money.” Cultivating an independent, innovative spirit is worthwhile, but it’s equally important to identify what you need, and have the guts to ask for it. Shoestrings make great security blankets, but when resources are within reach, it’s best to snip those strings. The severing exposes you to potential criticism, yes, and it means someone might conceivably make the case that you’re too costly to keep, sure …

But it also means you’ll do your best work, in good time, with minimal risk of burnout. What could be better for your work-life balance, your health, and your employer’s bottom line?

I’ll keep my ability to improvise and adapt. I’ll hang onto my talent for working under tight budgets and tighter deadlines. I’ll learn multiple ways of circumventing disability barriers, because the ideal environment will not always be there.

As for the scarcity-based, shoestring mentality? I think it’s time I let that go.

Hello Guilt, My Old Friend…

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After months of being unemployed (or underemployed, if you count sporadic freelance gigs), I finally got a full-time job. I have, for the first time in my life, gainful, permanent employment. I have achieved what I’ve been hoping for, and it feels indescribably satisfying. I feel grateful, even though I earned the job. I interviewed quite well. I conducted extensive research on the organization before coming in, and proposed plenty of ideas which the interviewers seemed to love. I dressed well, spoke confidently, and wrote a cover letter of which I can be just a little bit proud. I had the necessary qualifications, useful background knowledge, and a passionate interest in the organization’s work. In short, I did everything right. I was, I think, offered the job on merit, and the accommodations I’d need were treated as a matter of course, not a burden.
I probably shouldn’t feel grateful at all. Nondisabled people don’t generally feel lucky when they get a job. If they’re qualified, they probably feel, if not entitled, then at least deserving. There’s no question of whether they can actually do the work; it’s assumed that they can until there is evidence to the contrary. Gratitude has a place in my life—quite a significant one, really—but it’s not something I really want to be feeling right now. I’ve been lucky, yes; in the current economic climate, just about everyone struggles to find work. Still, I did the legwork and I think the organization will continue to see me as an asset.
There’s another emotion that is harder to ignore though, and I consider it far more toxic. I feel overwhelming guilt—guilt that I, who have only been searching for a handful of months, got a job so soon. I feel guilty that my supervisors have absolute faith in me, never seeming to regard my disability as anything other than a personal trait. I feel guilty that a bachelor’s degree and scant experience were enough to land me the job, when far more qualified veterans of their fields couldn’t find a job if they begged. Most of all, I feel guilty that my highly-experienced, educated, and talented disabled friends are still out of work, still searching frantically, still wondering how they will make mortgage payments.
Again, I know guilt is not something I need to feel. None of my disabled friends would dream of resenting me. They are far too happy for me to feel something so petty. They’re overjoyed that I’ve found employers who value and respect me, and they’ve all emphasized how proud I should feel. (I don’t deserve my friends, I really don’t.) If anyone, disabled or otherwise, felt envy or resentment, they’ve hidden it well. The only person feeling anything other than pride and happiness is me.
From what I’ve gathered, this is a very normal emotional place in which to be. Disabled people have often confessed guilt when good fortune befalls them, no matter how hard they worked to be successful. So much of life is governed by luck, which is why people like me can find work and other, far more worthy candidates cannot. Yes, I slaved for my degree, and yes, I have an impressive-looking portfolio, but I’m certainly not the ideal candidate for most jobs. Yet here I sit, employed and happy.
I know better, but some dark, vindictive part of me thinks, “How dare you? How dare you rejoice when your friends are struggling? How dare you tell them all about your job and how great it is when they’re attending interview after interview without success? Are you so callous that you can enjoy your good fortune when people you love aren’t so fortunate? Really, how dare you?”
I’m doing my best to ignore that malicious little voice. I know full well that my happiness in no way robs others of opportunities. I know that my success will not hamper anyone else’s, and that the most productive, sensible course of action is to throw myself into the work and support my unemployed friends as well as I can. I know all this, but knowing a thing and believing it are two very different things.
I hope that I, and others in my position, will learn to eliminate or at least ignore these feelings of guilt. They are a waste of energy, and can even lead to self-sabotage if they are strong enough. There is no need to feel guilty, and certainly no good can come of it.
If you’re out there, and if you’re listening to that nasty little voice inside your head, do your best to tune it out. You are allowed to be happy. You are allowed to feel blessed without devaluing your effort and talent. Seriously, you’re allowed. Be there for your peers, give them a shoulder to cry on, and help them in whichever ways you can. That, friends, is all you need do.

The Dreaded “Can’t” Word

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Before I get started today, I must first emphasize that this post is not intended as a poorly-disguised roast of a certain individual (who here remains nameless). The situation was unfortunate, and I have my own opinions about that as you’ll see, but this is not a roast. There are many who know a lot of details about this situation, including the professor’s name, the course she teaches, and the program she is involved in. While some of this may be guessed at, and while I am not bound by anything in particular, I ask those of you who have this information to keep it to yourselves. I discourage any spreading of information that isn’t already in this blog post. I don’t want unjustified backlash to hit this person, her program, or her institution.

Now that that’s out of the way … on we go!

The word disability implies that there will be some things a person will be unable to do if they have one. If you’re blind, being unable to do certain things goes with the territory; you get used to it early on, and maybe if you’re lucky you manage to prove a few people wrong along the way. In general, though, some things are going to be beyond us … and that’s okay. I’ll never be able to colour-coordinate my outfits; I’ll never pick out my own wedding dress (simply liking how it feels isn’t enough, sadly); I’ll never be able to be a photojournalist. (Okay, so I’m at peace with that last one.) And guess what? I’m fine with that.

 

What I’m not fine with is being told I’m unable to do something when I am, in fact, very able. This type of statement usually comes in two forms:

1. “You can’t do this at all, because you’re blind. Sorry.” Or,

2. “You can’t do *all* of this, so you shouldn’t do any, sorry.”.

First of all, unless we’re talking about the painfully obvious stuff (photojournalism, anyone?), no one is a better judge of what I’m capable of than I am. I know myself best, and as long as I know what I’m signing up for, I’m usually right. This goes for things I can’t do, as well: if I insist that such-and-such a task is absolutely impossible, it probably is.

 

Being told I can’t do something when it’s actually true is tough to hear, but I can deal with it. This is the hand I’ve been dealt, etc. etc. However, life isn’t always so kind. A few days ago, I was just beginning my third year in a university program I really, really love. I took this program with fairly specific goals in mind, and third year is when I get to realize some of these goals. I was very, very excited. And then …

 

I got an email right before the class I was looking forward to most; it was from the instructor teaching the class. I was expecting a “welcome to the class” sort of message, but that’s not quite what I got. In effect, the email informed me that the instructor was sure I would be partially, if not totally unable to do the work required for the course; she thought I had probably been ill-advised, and that I should consider alternative paths. After finishing the email, I swear I felt my whole world shift beneath me. It didn’t quite crumble, but it thought about doing so. I was instantly in tears. “There goes my future…” I thought to myself. The class was a core, required prerequisite to other classes I desperately wanted to take. I had paid for it. I had been accepted into the program, and promised that I’d be given  the chance to do as much as I possibly could to be on par with everyone else. And yet, here I was, being barred from one of the most important courses in the entire degree.  That would all have been devastating, but acceptable … assuming the instructor had been right. Sometimes, there are bits I simply can’t master, and that’s perfectly okay with me.

 

I understand where this instructor was coming from: she wasn’t sure how much time it would take to accommodate my needs on a regular basis. She wasn’t certain of how to go about teaching me differently than the other students. She was hesitant about having to mark me somewhat differently than the others. The list goes on. She was very polite, very gracious, and very sincere. I knew then (and know now) that she was not trying to be discriminatory, or malicious, or any of the other descriptors others have thrown at the situation since it got started. If I have her as an instructor in future, I will be very fortunate: she really knows  her stuff. About this, though, I think she might have been wrong.

 

First, I have since discovered that the course can be taught in very different ways: another professor at this same university teaches the entire class on computers, making it very accessible for a blind student. Second, I have discovered that the method this instructor was using was not so standard as to be the only viable way to go about things. I would still be employable, even if I was unable to do the work exactly the way her sighted students can. Deciding not to teach me at all, therefore, put her insistence on sticking to a certain method above my ability to do the work at all. Without boring you, suffice it to say that it came down not to my skills or abilities, but rather to the fact that I can’t use a pencil. That’s it. That’s all it really was, if you look at the big picture. Such a tiny, insignificant detail! And yet it was enough to keep me from pursuing my goals in this program.

 

I accepted everything she said with as much grace as I could. I agreed to audit the course (I’d still pay some tuition but get neither the credit nor the feedback) and went on my not-so-merry way. I thought then (and still think), that she was probably doing the best she could. Maybe I didn’t like the result, but I knew better than to take it personally. While it is my opinion that she should be prevented from doing this to future students unless it’s truly necessary, I do not and will not endorse any roasts, rants, or other negativity aimed at her personally. If you see any of this, know that I neither approve nor validate any of it. I have not included her name, so those of you who know it should please keep that information to yourselves. My quarrel is with the situation, not the individual herself. Let no more be said on that matter, in particular.

 

Here’s the thing, though: her refusal to think outside the box very nearly impacted my degree. I got lucky (another professor stepped up to the plate, brave soul), but others don’t get lucky. Others have professors who mark them down on purpose, trying to get them to fail out of the program. Others are denied entrance into a program on the basis of blindness or other physical disabilities for very flimsy reasons. Others are told that the only things they’ll ever be good for are basket-weaving and maybe some beadwork if they’re truly enterprising. Yes, people are actually told these things. Today. In 2014.

 

Because others are not so lucky, I feel obligated to speak for them. I am fortunate, but others were not, and are not, and will not be. People will be turned away, and set aside, and pushed out of where their dreams take them, all because of laziness, or stubbornness, or fear of progression, or lack of understanding, or any other sad excuse anyone is willing to name. I wasn’t turned away. I was able to go where I wanted to go, and found people more than willing to take the journey with me. Most importantly, I am being given the chance to find out whether that instructor was right or wrong. Maybe she is right, and maybe I’ll fall flat on my face in a heap of exhaustion two weeks into the course. Maybe. … But what if I don’t?

 

Ultimately, I was able to respond to  “you can’t”, and “you won’t”, with “I can”, and “I will”. Let’s help others do that, too. If you see any instances of discrimination, whether intended or unintended … whether well-meant or malicious … whether seemingly justifiable or blatantly ridiculous … say something. Please. The victim may feel that the discrimination is justified. They may feel bound by confidentiality agreements, or politics, or fear of retribution, or serious backlash. I myself was hesitant about speaking up, because I was afraid to damage my relationship with  the university, the program faculty, and anyone else who might want to weigh in on the situation. Most of all, I was afraid to endanger the tenuous relationship I could have with the instructor who turned me away. The last thing I want to face is difficulty in future because I advocated for myself.

If they can’t speak (and sometimes they just can’t), then who will? Sometimes, we can’t do things…but most of the time, we can. And we will.