Who Am I, And Where’s My Dog?

Who am I?

My name is Meagan. By day, I’m a Communications Specialist; by night, a freelance editor. I love cats, dogs, and other cute, fluffy creatures. I’m a bookworm. I love music. I hate waking up early and I hate bugs. I love playing the piano (I’m not very good at it) and correcting other people’s grammar (which they actually pay me to do). I’m a mercurial introvert with a ton of excellent friends who love me anyway, and a wonderful partner who somehow manages to put up with my quirks. I procrastinate like all good writers should; I struggle with insecurities and jealousy and bouts of irrationality; I really, really love chocolate. In other words, I’m pretty normal. … Oh yeah, and I’ve been blind from birth.

You might be thinking, “Wait, what’s that you said about being pretty normal?”

Unless you hang around with blind people a lot, (and if you do, then good for you, we’re a lot of fun), you probably can’t help thinking that there’s a certain otherness that characterizes people with noticeable disabilities like blindness.  In some ways that’s true. We definitely lead altered lives. We walk around with long white sticks (or maddeningly cute doggies you’re not allowed to pet), and we bump into stuff. We also tend to possess a lot of things that talk.

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

So, you may ask, and with good reason, “If you’re exactly the same as everyone else, why write a blog about blindness?” For too many years, I believed I had to play up the “normal” bits of myself to the point where I was practically in denial when it came to my disability. I believed that a “good blind person” had to behave as though the blindness was practically nonexistent. If it did exist, it was no inconvenience at all. No big deal, I can function just like everybody else, maybe better. I am capable blind gal, hear me roar!

While it is very healthy not to centre your life around blindness, it’s equally healthy to acknowledge that blindness is really damn annoying sometimes. It’s inconvenient. It makes life harder. It’s not some divine gift that makes me a better person or whatever it is we tell ourselves these days. Yes, I deal with it, and no, it’s not a constant stumbling block, but yeah…it’s really, really inconvenient sometimes. I routinely deal with questions like “Where’s your dog? You should have a dog!” and “How many fingers am I holding up?” and my personal favourite, “How can you possibly have a life? How can you be happy?”

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

Sometimes, it’s really tough to get hired because nobody believes I can work. Sometimes, people treat me like I’m invisible or inhuman, because they perceive me to be fundamentally different and, by extension, inferior. Sometimes, people talk about me like I’m not there. Sometimes, people complain because I’m “a drain on the system”. Sometimes, I feel desperately lonely and misunderstood. Sometimes, I really, really hate being blind. This ain’t a picnic in the sun…sometimes.

Mostly, though, I’m pretty normal, like I said. I’m writing this blog because if I can make one person understand what my life is like, then I’ve succeeded. If I can make one person realize that we’re not so different, inferior, invisible, then my time hasn’t been wasted. I don’t speak for all blind people, but I do know how they often feel, whether they’ll admit it or not.

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

But wait–where’s my dog?

I don’t have one, … and that’s okay.

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Wait!

“What’s it like, being disabled? As in, day to day?”

For a long time, this question stymied me. I had no frame of reference, no way to start with “normal” and paint a picture of what “abnormal” might look like. I could describe specific obstacles, particular incidents, but I had no sweeping, instantly relatable analogy–no lens to capture what this life is like when it’s the only reality I’ve ever known.

Many have taken a crack at this tough little nut, and come up with innovative ideas along the way. Being disabled, some say, is like playing a video game on the highest difficulty setting. Others say it’s like navigating an obstacle course while everyone else uses a sidewalk. Some of us resort to hiking metaphors. Your path is wide and smooth; mine is a rocky, treacherous trailblaze of a life, which manages to be as hard as people assume, and at the same time, much easier.

It was not until I stood on a slushy street corner, waiting for an unusually long light to change, that it hit me. I had found my personal metaphor, and it was one that covered an astonishing amount of ground in the simplest way.

Being disabled, I realized, is a lot of standing on the corner, waiting for the world to decide that it’s safe for you to cross. My life as a disabled person involves a lot of standing still, watching cars fly freely by, wondering when the light will turn green long enough for me to make some headway. Since the system is more complicated than I can wrap my head around, and there’s no handy countdown, I have no clear idea when that might happen. So I wait, getting increasingly cold and impatient, for a path forward. Some days, it feels as though the world is filled with cars, and I am the only pedestrian in sight. They are roaring along while I walk and wait, walk and wait.

I wait for accommodations to be put in place. I wait for my paratransit ride to show up. I wait for technology that promises to save me. I wait for people to decide I’ve proven myself worthy. I wait for attitudes to change, for fears to be calmed, for unreasonable limits to be stretched. I wait for accessible products in a world where nothing is designed for me—nothing I can afford, anyway. I wait, sometimes quietly, more often restlessly, for the world to make room for me.

Then, when the waiting becomes too much for me, I try to jaywalk. I barge right into the unsafe spaces, the heavy traffic, the uncharted territory. I might get a warning or a slap on the wrist or even an angry honk from someone’s horn; occasionally, I retreat to my corner, chastened. I am foolish and fragile. I must be protected from myself, and from shadowy figures who would exploit me. I must be patient. I must be understanding. I must realize that change doesn’t happen overnight. I must not ask how long this light will stay resolutely red. I must not point out that everyone else seems to be cruising while I am plodding.

All in good time. Soon enough. Someday, if you go the extra mile.

Walk and wait.

Every now and again, that light turns green and I make real progress. Barriers are overcome, and my journey picks up speed. Life comes so easily that I have time to forget, if only for a few moments, that I was ever a lowly pedestrian in a dangerous network of drivers. The reprieve might even be long enough for me to point at other unlucky foot travelers, and to wonder loudly what they’ve done–or left undone—to leave themselves stranded at the corner.

Inevitably, that light turns red again, and I remember what it is to stand still, thwarted by incompatible software or a narrow-minded employer or a skills gap. There’s always something, and that something brings me back to the corner, where others can gawk at my inactivity and imagine how I brought it on myself. And it’s back to the waiting game.

With too much prodding, the metaphor falls apart, as so many of them do. Living as a disabled person is typically far less passive and futile than this framework would suggest. There is worthwhile work I can do while I stand on that corner. I am not a helpless victim of a static system, and I can certainly jaywalk if I wish, with the result likely to be rather tamer than death. Disapproval and societal exclusion aren’t quite as dramatic as an altercation with a speeding car, and I’m seeing genuine, lasting steps forward all around me. I am more welcome, more respected than I have ever been, and it’s not all down to my own advocacy.

Nevertheless, I use this comparison because it explains why the hurry-up-and-wait nature of living with a disability is so interminably frustrating. While my every success feels hard-won and snail-pace slow, my nondisabled peers seem to sail through most challenges, hitting so many green lights they don’t even notice I’ve fallen behind. For them, a red light is an inconvenience, not a brick wall, and no one is telling them to take those red lights gracefully. Meanwhile, I’m reminded to be grateful I’m allowed to cross at all. Commonly enough, the criticism comes from fellow disabled people, who are quick to condemn and still quicker to remind me that it could be worse.

I work toward a world in which I’m not always suspended in mid-stride, waiting for something to change or improve or move out of my way. I hope the next generations will know less and less of what it is to fall behind not because they are moving too slowly, but because the rest of the world hasn’t caught up. As I anticipate the birth of my first niece/nephew, I wish with all my heart that should they face barriers similar to mine, they will not need to be so patient and gracious and grateful. And I hope that, when the time comes to jaywalk, to break the rules and challenge the status quo, they will have the courage to do it, and the good fortune to emerge triumphant.

If you ask me, that future is definitely worth waiting for–but sooner rather than later, please.

Enough With the Sick Day Humblebrags

All my life, I’ve been surrounded—some might say afflicted—by troopers. 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 trooper.

The trooper’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 trooper 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 troopers 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 trooper 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 trooper, 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.

Guest Post: When Your Advocacy Looks More Like Erasure

It’s challenging to communicate the seriousness of the unfair treatment service dog handlers encounter on a regular basis. I’m not a handler, but all I have to do is spend half an hour with one of my handler friends to get a sense of how frustrating it really is to exist in the world when you have a service dog. Watching service dog users interact with the disrespectful public sets my teeth on edge, and I have no idea how they put up with it as gracefully as they do.

It’s tempting, then, for handlers and for me, to use racial discrimination as a direct comparison. I’ve made such comparisons on this very blog, without examining the deeper implications of that choice. Today, a guest poster, who has chosen to remain nameless, challenges me, as well as her fellow service dog handlers, to take a closer look at these comparisons. Compelling as they are, she invites us to consider a more inclusive path forward. I, for one, will be doing a lot of rethinking.


From time to time, controversy rears its ugly head in my network of service dog handlers. A viral news story about a person of colour being mistreated sweeps social media, and inevitably, service dog handlers draw direct comparisons to their own lives. They equate discrimination they have faced due to the presence of their dogs to that faced by people of colour and other marginalized groups. It’s usually sparked by genuine frustration as handlers try to help the public understand why access refusals are problematic, but the resulting conversations usually lack nuance and meaningful intersectionality. Traditionally, I have remained silent. I have sat on the sidelines, scrolling through the comments, feeling increasingly uncomfortable. I’ve been unwilling to speak out, not wanting to risk backlash from those propagating this comparison. After the most recent surge of posts like this, I find I no longer want to be silent.

Before I go any further, I will admit I face discrimination because of my gender, my disability, and, yes, because of my service dog. However, I am white, and I have the privilege of never experiencing discrimination or oppression due to my race. Thus, I will be describing my experiences as a white handler, and I am calling out my peers, because without exception, the handlers I’ve seen conflating their experiences with those of people of colour are white.

As I said above, I am not a stranger to discrimination due to my dog. I have been refused access to stores and restaurants, been turned away from taxis, and even been denied employment opportunities. Is this humiliating? Yes. Does this harm me? Yes. Is this highly illegal, and should violators of the laws be punished? Yes. Does this mean my accessibility issues are on the same level as discrimination that’s racially-motivated?

No.

On the surface, you can definitely identify similarities. It’s easy to compare service dog discrimination with racial prejudice, especially if you want a familiar framework to help nondisabled people understand it. Denial of access to services and employment is par for the course for people of colour, LGBTQ folks, people with disabilities, etc. When you dig further down, however, you quickly encounter the pivotal difference which, at least in my mind, reveals a false equivalency. That essential difference is freedom of choice.

Using a service dog is a conscious choice one makes with the full awareness that discrimination probably will occur at some point. The service dog programs I’ve attended had info sessions about what to do if you are denied access to a public place or public transit. I was warned that I would be placed in situations where I would have to argue for my rights. I still went ahead with the decision to get multiple service dogs over the years, because I weighed the pros and cons, and still found that a dog was the right choice for me, even if I would occasionally argue with members of the public who are unaware of relevant laws. That is an informed decision I made, and continue to make, regardless of how I’m treated. In the case of PoC, the barriers they deal with are not based on choice, but on fundamental characteristics they did not ask for and cannot change. Make no mistake: I’m not in any way minimizing the importance of service dogs. Service dogs improve the lives of many, and are typically considered medical equipment. I would never choose to be without mine for any length of time, and no one should ask it of me. But that’s a far cry from having a skin colour that automatically sets me up for mistreatment.

Now, I’m not at all saying discrimination against service dog handlers should be ignored just because it is based on a choice we made, but there exists a difference between the two situations that cannot be overlooked. Discrimination based on race and discrimination based on the presence of a service dog are both reprehensible, but they should not be conflated. When a business owner denies me access because of my guide dog, it often involves fear of the dog, concern that my dog may make a mess and/or violate health codes, concern for allergies, and/or a lack of awareness of the laws that grant my service dog access to any public place. When PoC are denied access, it is due to a fundamental mistrust, disgust, hatred, and/or fear of them as people. I may be asked to leave because a business owner is afraid that my dog will shed on their merchandise, while  a PoC may be followed around the store by staff because they are afraid they will steal something. Put another way, I am mistreated because I am accompanied by an animal; PoC are mistreated because some people view them as animals.

Another telling difference is the response by authorities to the discriminatory act. If a business owner threatens to call the police because of my dog, I generally invite them to go ahead. Most likely, the police will be on my side. They will inform the business owner that I am legally permitted to have my dog with me, and if the business owner doesn’t comply, they risk a fine. In fact, I have my city’s police department’s phone number in my contacts, and when I meet a belligerent business owner, I actually offer to call the police for them. While there have been a couple of occasions where the police have also been unaware of the laws they have sworn to uphold and have told me that I must leave with my dog, that is the worst thing that can happen to me. I leave the business and promise myself that I will never patronize it again. Maybe, if I have the mental fortitude, I send a letter to the head office of the company, or to the media, to lodge a complaint, which may net me an official apology if I’m lucky.

This is not the story for many PoC. I am sure most of you have seen news stories regarding business owners calling the police on PoC who were quietly minding their own business in public. In many of these cases, a huge police presence arrives, the PoC is arrested, and physical harm can sometimes follow. Many PoC have spoken out saying that they fear and distrust the police, with good reason. As a white person, I can freely assume the police are my allies. PoC don’t have that vital privilege.

Those who conflate these two types of discrimination frequently justify it by claiming it’s the only way to call public and media attention to the plight of service dog handlers. I have seen several social media posts in which a white service dog user points to a news story where a PoC was ejected from a store or denied access to an Airbnb, urging their followers to replace the PoC in the story with a service dog handler. While it is true that discrimination against guide dog users rarely makes the news, it is also true that the overwhelming majority of discriminatory acts against PoC fails to reach the media, too. I do believe that society would benefit from a more robust media that fairly covers issues relevant to PoC and people with disabilities, but I do not believe that erasing the experiences of the PoC for the benefit of service dog users is the right way to achieve that aim. Both issues need to be in the spotlight, and even though people with disabilities often feel justifiably ignored, I don’t believe white handlers should be pushing other marginalized people aside to draw attention to our own issues.

What about empathy, you ask? What about common ground? Empathizing is important, and we are absolutely free to use our experiences as service dog handlers to show empathy for other marginalized groups. I have personally felt the humiliation of being ejected from a public place, and I know firsthand that it feels terrible. That being said, I wouldn’t use my ability to empathize as a method of erasure, especially when the discrimination caused by my dog has a much different origin, and far less harmful results. I can see the ways in which my experiences relate to what a PoC goes through, but I’d never state the two are interchangeable.

Fellow white handlers, we can and should do better. We should call out discrimination when we see it because we know it is wrong, and we know that it hurts. We should stand together and demand equal rights for everyone, not just the groups we are a part of. And we should work against the instinct to erase or distract from the voices of other groups to amplify our own. There is plenty of room out there for all our grievances without denying anyone else the attention theirs deserve.

Better Living Through Severed Shoestrings

“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.

In Praise of Those Who Share Their Wheels

Where I grew up, a five-minute drive (an hour’s walk) would take me to school, a post office, the nearest convenience store. Forty-five minutes in a car would get me to music lessons, assuming the weather cooperated. Two hours got me to the nearest city, where decent shopping could be found. Four hours got me all the way to Edmonton, for music competitions and specialized medical care. To get anywhere of consequence, I needed more than my two legs, and my legs were all I had.

Part and parcel of being a kid in a rural area was asking for rides—to the store, to extracurricular activities, to friends’ houses, to school, even, if you managed to miss the bus. We were all used to it, and all our parents were used to the asking. Many childhood memories involve being driven everywhere, through rain and snow and parental exhaustion. It was annoying to be so dependent, but we were all similarly needy, so it never chafed too badly.

Then, all around me, my friends and relatives began turning sixteen and getting their licences. Driving fever hit, and suddenly everyone was blasting forbidden music at top volume, speeding around in second-hand vehicles, thrilled with their new freedom. For the first time, getting where they needed to go was a matter of grabbing their keys and promising they’d be home by eleven.

Everyone but me, that is.

At sixteen, seventeen, eighteen, I was still hitching rides, especially when out of reach of a cab or bus. Visiting my family during the holidays meant convincing some kind soul to ferry me home. Getting to the hospital when I was too weak to rely on a cab driver meant calling everyone I could at inconvenient hours, asking the dreaded question through tears. Socializing with friends who lived on the outskirts of the city meant expecting them to drive half an hour out of their way, much of it through downtown traffic, for the dubious privilege of seeing me. My life, as a twenty-three-year-old urban dweller, is still influenced by my inability to drive. Asking for someone else’s wheels never gets easier, though it is routine and inevitable.

I could go on at some length about the ways being unable to drive makes life harder, more precarious, more difficult to plan, less convenient, less independent. Today, I’d rather focus on the people who answer yes, over and over. I want to honour the relatives, friends, and acquaintances who have driven in all weathers, at all hours, for all reasons. I want to highlight the kind stranger who, discovering me lost and bedraggled during a storm, drove me to my house without any thought of recompense. They have performed this service whether they felt like doing so or not. They have done so without expecting a return on their investment of time and gas money. They have done it, if not always without complaint, then with generosity. The music lessons and emergency medical appointments and shopping trips and singing engagements and social visits have all meant the world to me, and I owe that joy to the people who transported me there.

When someone asks for a ride because they have exhausted all other options, you know they desperately need it. You know it will improve their lives in ways large and small. You know that it is not usually easy for them to ask.

If you’ve been a frequent driver for others, know that you are valued, and needed, and appreciated. We may not always tell you so, but it’s no less true.

It’s easier than ever to travel without a vehicle, but there will probably always be a need for a kind soul with a car.

“A” is for Advocacy

I’m not a parent, but the internet has exposed me to the struggles, joys, and everyday dilemmas of parenting in this ever-connected, ever-judgmental world. I read discussions about how to teach kids to interact more gracefully on the playground; how to remove bread from a hot toaster; how to play traditionally-inaccessible board games; how to shave sensitive areas of the developing body. Each time I see one of these, my heart soars. My parents had to raise me with sporadic, impersonal support, while parents who knew nothing of disability looked on with varying degrees of disapproval. They made it work, but there are many gaps in my basic skillset that might have been filled by an online community of disabled people who were willing to share their wisdom. If Disability Wisdom or VI Talk had been around when I was growing up, I might not be so wary of toasters.

The one skill that seems underrated, particularly in rural settings, is advocacy. Several of my teachers, visual consultants, and special education coordinators were adamant that I master an array of miscellaneous skills, like cutting paper with scissors, drawing the human form (with what little vision I had), and writing a legible signature. My childhood involved hours spent cutting a piece of blank paper into a series of meaningless rectangles that were destined for the recycle bin. I practiced my signature each day in a special book, trying vainly to copy the raised signature on the front cover, and wondering why sighted people were allowed to have illegible scrawls while I had to achieve perfection. (These days, my signature is defiantly unreadable.) I connected dots on graph paper. I completed strange worksheets with tactile circles, using a different colour for each one. These exercises ensured that I’d always be comfortable with scissors, and have a rudimentary idea of how to draw a human face, but they didn’t teach me how to stand up for myself, or ask for accommodations, or interpret my rights as a disabled person. Every now and then, someone would mention that I must always be my own advocate, but the concept was never expanded upon, and far more attention was paid to how I held a pencil—a pencil I’d seldom use, since I couldn’t handwrite—than how well I understood what being a disabled adult might be like.

Steeped as I was in traditional Catholic culture, I was an obedient student rather than a respectful one. Fear and anxiety were far more influential than respect or interest, and while I enjoyed school and hungered for knowledge, my primary and secondary education rarely encouraged me to grow into anything more than an unquestioning rule-follower. I’d occasionally be chastised for seeming too passive, or criticized for failing to take initiative, but years of conditioning kept me from voicing disagreement or making my own decisions in almost all cases. After all, what did I know that grownups did not? Who was I to request accommodations that made sense to me when someone who earned a lot of money and used plenty of high-level language felt differently? How could I ever provide insight about my own learning style when someone with decades of experience knew best? I carried on in this way for far too long, wanting to take the wheel but convinced I’d cause a wreck. Systematic rejection of my ideas and insights bolstered the illusion. By the time I left grade school to start my postsecondary adventure, I had very little idea that my rights would constantly be challenged, or that I had disability-specific rights at all.

In university, I soon figured out that even though I had no foundation to build on, I’d have to learn how to be my own advocate, and learn it quickly. My life and education were in my own hands, and those hands were more capable than many had let me believe. With ample coaching and encouragement from newly-discovered disabled friends, I engaged in the controversial art of speaking up. I practised saying “no,” or “yes, but not that way,” or “please Don’t grab me,” or “I want to try this instead.” When roadblocks were put in my path, I didn’t docilely accept them as immovable parts of my reality. Sometimes, I was even a little bit firm. I worked to let go of “I’m sorry, that’s probably silly” and “What do I know?” In place of those familiar crutches, I paid attention to what worked for me, and asked for it. When charm failed, which wasn’t often, I used blunt logic, and usually won. It was a novel and exhilarating way to live, though it came at a cost. Since acquiring advocacy skills, my life has never been as calm and peaceful as it once was. Taking control of your own life is exhausting business.

Living in a more tolerant and accessible world doesn’t mean everyone can sit back, relax, and forget how to take ownership of their lives. If anything, widespread complacency about our supposedly-civilized society means parents need to be even more diligent about instilling advocacy skills in all children, not just disabled ones, early and often. I’m not suggesting that children should be taught to despise authority or behave disruptively for the sake of it, but they should be as prepared as possible for the ignorance, bigotry, and exclusion they will inevitably face. Adults are not always right, and it’s neither healthy nor safe to teach kids otherwise.

Whether you’re a parent of a disabled child or a newly-disabled adult, don’t ignore the limitations of a life without solid advocacy—a life far more limiting than a disability could ever be. Be mindful that third-party advocacy will never match the advocacy you can do for yourself. Value the insight and experiences of experts, but be open to customized solutions. Seek advice from the disability community, but remember that conventional wisdom is not without merit. Recognize that not every problem is a disability problem; some of them are just ordinary problems that can be solved in ordinary ways. Emphasize the powers of courtesy and respect, but never underestimate well-harnessed anger. Acknowledge social hierarchy, but be aware that hierarchy is commonly abused.

Parents may resist teaching advocacy skills, and I have the greatest sympathy with them. Advocacy is frightening, and frequently disappointing. It is delicate, thankless, much-maligned work, especially when it’s done by young people. It will not always produce the hoped-for results, and it’s rarely much fun. Understand that advocacy is tough to cultivate, and likely to inspire nasty pushback from people your child loves and trusts. Be ready to deal with the possibility that your child’s advocacy will sometimes be directed at you, and that you won’t like how it feels. Know that you will need to respect their advocacy, even if it hurts or upsets you. Accept that you are not exempt. Shudder at these harsh truths, and teach it anyway.

Advocacy skills have guaranteed that my education was useful and comprehensive. They prevented me from being barred from services I required. They help me be productive and successful. Advocacy is the cornerstone of every fruitful thing I have ever done for my schooling, my career, and my relationships. It keeps me on my feet when the wind is doing its best to knock me over, even and especially when that wind is coming from an unexpected direction.

Before you worry too much about signatures and scissors and the exact method of removing bread from a toaster, remember that A is for advocacy. Start there, and everything else should follow.

Counting My Spoons: A Life Lived in Pain

It’s easy to be philosophical about blindness. I don’t have to stretch much to say it’s opened doors I never would have discovered if I were sighted. Blindness has compelled me to meet interesting people, acquire specialized skills, and develop a readily adaptable spirit. It’s not always fun—not even mostly—but it’s not without its upsides.

I am not philosophical about the chronic pain I’ve lived with for almost ten years. A decade of tension pain and migraines has weathered and exhausted me in ways I’m still attempting to put into words. If blindness is like the common cold, interfering with everyday life but easy enough to accommodate, chronic pain is like the flu. Just when you think you’re finally feeling strong enough to conquer your to-do list, or socialize with friends, or get some writing done, it sweeps over you, leaving you in a nauseated heap. At that point, there’s nothing for it but to slink off to bed, cancelling plans and sowing disappointment as you go.

Often enough, I can hack it. How else would I manage to hold down a job and maintain some semblance of a life? On most days, I grit my teeth, slather on the peppermint oil, and plaster on my smile. I carry tissues for when my eyes water with the pain, and can occasionally be found slumped over my desk with my head in my hands, but I can usually be depended upon to seem healthy and energetic.

Usually.

If you’ve ever spent any length of time with me in person, there’s an excellent chance I was fighting pain. If you’ve tried to arrange a phone call or coffee date with me, I’ve probably pulled out at the very last minute. If you’ve worked with me, you’ve seen me press my fingers into my forehead when I think you’re not looking. If you ask, I’ll say I’m fine. Most of you know I’m full of it, but it would be far too awkward to pursue the matter.

Loved ones have received text messages like “I’m not in pain today!” People who know me well have seen me cry, throw up, or lash out when my headaches are stronger than my resolve to seem normal. Managers have heard a dozen variations of “I need to leave early,” or “I need to sit quietly in this corner until this backs off.” On the very worst days, they get “I’m sorry. I tried, but I can’t come in today.” Housemates and partners have sent me back to bed after I’ve insisted I’ll be okay. Each time feels like a battle I’ve lost.

My fiancé deals with the brunt of it. No part of our relationship is untouched by the unpredictable whims of a body in pain. Dates are postponed, and postponed again, and eventually forgotten altogether. Dinners are skipped because my migraine has sapped me of my hunger. Harsh words escape because while my control is exceptional, it is not perfect, and pain makes me feel as defensive as a wounded animal. Domestic duties are shirked, and I watch guiltily from bed as he sorts laundry I am too sore to hang because I can’t reach above my own head. Many a time, he has cooked, cleaned, and run errands while I cuddle my heat wrap and take enough Excedrin to make an elephant tremble. I interrupt intimate moments, rolling away to hide angry tears; I am too tired, too sore, too weak to participate. Through it all, he is incredibly understanding, but the inequality is its own kind of pain.

And then there are the good days: days when I’m thrumming with energy, ready for anything. During these rare days, sandwiched between “okay” and “terrible,” I sing, clean, write, and tackle all the tasks I’ve left undone. I squeeze every moment of life I can into these precious pain-free days, balancing my enjoyment of the freedom with the knowledge that it never, ever lasts. My good days fool everyone into believing I’m all right. Unlike me, they still have faith that it’ll stay that way.

The crash, after a string of good days, is the worst.

I count my spoons with care, trying to account for the unpredictable. Do I spend this “good day” doing housework or writing? If I only have the energy for one social gathering, but I’ve booked two, which should I cancel? Which friend would I rather upset? Whose disappointment is easier to bear? Which task can I afford to push back? Since work is normally my top priority, and getting through it each day is costly, what should I do with the few hours before bed?

Know this, dear reader: my heart is so much bigger than my energy. My desire to connect with you, return your email, meet you for lunch, text you when you’re lonely, help with your creative project, is infinite. My ability to fulfill that desire is decidedly finite. If I’ve missed your call, cancelled our plans, failed to meet your deadline, ruined your good time with my exhaustion—I am truly sorry. I want to do better. If I had enough spoons to make everyone happy, I’d use them, because all my friends and all my family members and all others who depend on me are worthy.

So I ask everyone I’ve hurt, everyone I’ve disappointed, everyone I’ve let down: forgive me. I am getting better at this pain thing, but I am still learning. I don’t always distribute my spoons wisely. I overestimate my strength and overbook myself. I make promises I fully intend to keep, and need more time than I thought because work and basic housekeeping and mere survival take precedence. On good days, I sometimes forget to be careful, and pay for it on bad days. And, readers, I know you’ve paid for it, too.

No, I’m not philosophical about pain. I can never pretend it opens doors, or enhances empathy, or makes my world a richer place. Mostly, it just makes every little thing I do harder and more complicated. It turns an organized, driven person into an unwilling canceller of plans. I’m nothing if not adaptable, though—thanks blindness—and I’m slowly learning to count those spoons. I’m learning strategies to keep the pain from taking over my life. I’m becoming more accurate in measuring my energy levels and prioritizing what really matters.

In the meantime, I ask for patience, not only for myself, but for everyone you know who lives a life in pain. No, we’re not always fine, and no, we can’t always tackle what needs tackling.

But we love you. We’re trying. We’re playing the worst of all juggling games, and we are so, so tired.

But by God, we’re trying.