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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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.

 

The Blind Girl Who Sings

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

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

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

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

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

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

“Why are you here?”

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

“I’m in this course, so…”

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

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

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

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

“Of course we can be writers.”

“But how?”

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

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

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

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

Clearly not.

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

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

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

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

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

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

The Settling Kind

In may, I visited my very first escape room. I expected some hiccups, but was nonetheless excited. Escape rooms sounded like the ideal amalgamation of everything I find fun: low-key activities, free of unnecessary stimuli, packed with puzzles and bolstered by a team atmosphere. I’m not naive, and I anticipated visual challenges I’d be unable to meet, but I assumed there would be enough tasks I could manage to make the experience worthwhile. Besides, I was used to settling for a little less. It’s an art form at this point.

The escape room proved less accessible than I could have imagined. We didn’t make it through the entire sequence, so I can’t guarantee there weren’t accessible brain-teasers lurking near the end, but everything we encountered was, at minimum, partially visual. Even the logic puzzles required such complexity of description—and such perfect recall on my part—that I gave up completely. While the fully-sighted participants swarmed the claustrophobic space, ransacking shelves and deciphering tiny writing on the walls, I hung back, at loose ends. Occasionally, some sympathetic soul would try to include me, but the activity was on a tight timeline, and none of us could think of a timely and effective way to let me participate at all, let alone as fully as everyone else. Ultimately, I was of no more use to anyone than the toddlers running around our legs.

I left the room disappointed, berating myself for being so. Shouldn’t I have expected this? Shouldn’t I be used to this by now? Why did I let myself hope, anyway? I ought to know better.

When you grow up rural and disabled, disconnected from opportunities and understanding peers, you’re likely to adopt the art of settling as a survival mechanism, and quickly. If you’re unable to be at peace with missing out, you’re probably in for a war of attrition.

It wasn’t all bad: My family and friends were unfailingly accommodating, and my sister was denied many an activity because my parents worried it would exclude me. Cousins and friends modified games to make them easier for me to play, and valued my participation almost without exception or complaint.

The rest of the world wasn’t so inclusive, and I came to accept, at a very young age, that I’d better get used to the sidelines. After a few years of skipping rope on the stage while my gym class played dodgeball, or solving math equations while my classmates took swimming lessons, I even grew to prefer the fringes. It seemed safer there—more suited to my introverted, self-conscious personality. Inclusion seemed like an unreasonable burden to place on anyone, and when you grow up surrounded by nondisabled people, you tend to prioritize harmony over desire.

By the time I started university and amassed a group of disabled friends, I noticed how demanding—that’s how I viewed them then—they all seemed to be. They wanted described video and tactile museum exhibits and blind-friendly versions of mainstream sports. Their determination to participate felt foreign and frightening. I’d spent years convincing myself I was happy to spectate. A deeply-embedded combination of habit and self-protection had let me hover on the sidelines without acknowledging my own desire for a life more fully lived. All this time, I had thought myself the kind of person who hangs back, sits things out, and says no to anything that seems too fun or messy or adventuresome. With the exception of my musical performances, I’d rarely permitted myself to reach beyond my limits and ask for more. On the cusp of adulthood, I was forced to accept that I had contorted myself into the settling kind to avoid rejection and exclusion. It’s easier to say “I don’t want to be included,” than to say “I wanted, and did not get.”

Growing pains set in, and some of them persist today. I still catch myself being a “no” girl. Settling for less than everyone else comes far too naturally, even now, and I continue to demand higher things for others while quieting my own dangerous longings. Loved and encouraged as I am by my family and friends, I still instinctively reassure myself that I don’t need inclusion. I don’t need to be welcomed. I don’t need to transcend my most basic needs. If I can pay my bills and hold certain types of jobs, what right have I to anything more frivolous?

Growing pains are not eternal, and look how much growing I’ve done! I’m now more focused on inclusion than access. I’m more inclined to ask for a pleasant experience, rather than contenting myself with a bearable one. If my reaction to the escape room is any indication, I’m becoming downright spoiled, expecting to enjoy social gatherings and play an active role in activities I’ve paid for. I’ve practically become a princess!

I’ve come a long way, but I won’t diminish what it took to get me here. Dismantling my tendency to settle has been a painful and unpredictable process, with many discouraging moments when I’ve judged myself or others for wanting what nondisabled people are given by default. Occupying my place at the table has been, and remains, an ongoing work-in-progress.

Are you a settler? Have you learned to think of inclusion in terms of what you deserve, while believing it’s a right for everyone else? Is fun something you force yourself to earn? Do you pretend you like the margins because the centre might reject you?

Don’t settle to survive. Do not place yourself in a supporting role because main characters have bodies and brains that pass as “normal.” Break the pattern of treating less like it’s more. Be grateful, and be patient, but be a little demanding, too. Realize that a more vibrant life is possible, and allow yourself to want it, because no one else can make it happen for you.

Most nondisabled people don’t tie themselves in knots, wondering whether they deserve to enjoy their lives. So, my fellow disabled people, why should we?

Two Years of Paratransit: Sad Truths and Hard Lessons

I’ve been a paratransit user for almost two years, and I don’t like to talk about it.
The reason I keep relatively quiet about my paratransit use is that I understand the stigma that comes with being a frequent rider of the short bus. Assumptions are made about my supposed lack of self-respect. Pity and scorn flow freely from disabled people, many of whom are former (and to their thinking, emancipated) paratransit riders. Horror stories are dredged up from decades past, often third or fourth-hand and seeming more dramatic with every telling. Potential employers cringe.
Whatever you might think of paratransit services, the reality is that they exist, many people depend upon them, and until we live in a utopia where public transit is perfectly accessible and adequate mobility training is available to everyone, it’s going to keep existing. I’d prefer to focus on the ways it needs to improve, rather than insisting it needs to be eliminated.
Here are some uncomfortable truths and tough life lessons I’ve learned since becoming a regular paratransit passenger. Sharing these will, I hope, make for interesting reading. Beyond that, I hope this post will be engaging for those who have had similar experiences, and instructive to those who want to educate themselves about paratransit and the people who use it.
Disclaimer: Paratransit services can vary widely from location to location. My personal experiences may not reflect those of all passengers.

Personal Space? What Personal Space?

Paratransit services are typically designed for a vast range of clients. Some clients, like me, require very little assistance, while other clients need help with basic tasks like climbing into the vehicle and fastening seatbelts. Like many one-size-fits-all solutions, paratransit drivers are given training that isn’t able to address every possible situation. Drivers are often trained to assume clients are completely incapable, because not all clients can communicate how much assistance they need.

This means drivers will lean across me to fasten my seatbelt. They will place their hands on me to steer me into a seat. Occasionally, they’ll try to guide me in unwieldy ways: by the hand, by the shoulder, even by the waist. Once I make it clear I don’t need or want this assistance, most drivers back down and apologize, though the odd driver will argue. Even so, I routinely find myself physically handled in ways most people would find invasive, despite repeated assertions that I don’t want to be touched without prior consent.

While I recognize that this pattern is mostly the fault of training that tries to do too much for too many, it’s indescribably wearing to flex your advocacy muscles day after day–muscles you’d normally reserve for the general public. More than once, a fellow client has violated my personal space in ways that are wildly inappropriate, only to have drivers shrug and assure me I’m in no real danger. I’m not in the habit of fearing fellow disabled people, but that’s not of much comfort when someone is stroking your arm and tugging repeatedly on your hair.

Even though paratransit is a service built specifically for disabled people, it doesn’t always feel like a very safe one.

Nine Rings of Scheduling Hell

Coordinating the schedules of thousands of people is no mean feat, and I admire the staff that somehow manages to make it all come together. Much as I respect the complexity of the job, I can’t help but notice that my time is treated as elastic and unlimited. I book in such a way that I’m far too early, just to avoid being far too late. Trip-booking is a logistical nightmare, because:

  • The pickup window isn’t always based on when you want to arrive at your destination. In my city, it is based on when you want to be picked up. So, you have to estimate your travel time within a half hour window, and hope that estimate is accurate.
  • The current policy for the service I use states that a client can be kept in the vehicle up to 90 minutes. Depending on scheduling, weather, and traffic, it can take over an hour for a commute that would normally take about 15 minutes. Good luck planning around that.
  • If a driver picks you up after the half hour window has ended, they are considered “late.” However, “late” is a pointless distinction because drivers arrive when they arrive. A driver missing the end of your window just means you’ll be waiting as long as it takes, regardless of how time-sensitive your personal schedule might be.

Many clients who use paratransit have jobs. That means we need a practical scheduling system that allows us to have a reasonable amount of control over when we’ll be picked up and dropped off. Employers don’t appreciate unpredictable employees, and who can blame them? In my city, my trip to work is considered no more important than a trip to the mall, or to church, or to Starbucks.

The worst bit is the apparent bafflement and annoyance booking agents and dispatchers express when I insist that my time does matter. Shocked as they are that I don’t only go to church and medical appointments, there isn’t much regard for my time–and that disregard extends to many disabled people I know. For a group that already struggles to find and maintain employment, a service that doesn’t prioritize a working person’s time is one more needless barrier in a line of others.

Change Ruins Everything

Besides my job, whose schedule is quite rigid, I tend to lead a rather spontaneous life. I’ve always been an agile gal who didn’t mind sudden changes–until, of course, paratransit became part of my life.

Since my trips usually have to be booked several days in advance, and must be cancelled with at least two hours’ notice, paratransit is not ideal for someone with a dynamic lifestyle that is subject to change without much warning. This isn’t so much a flaw in the system as it is an unavoidable consequence of trying to make one service work for thousands of busy people. It’s understandable that paratransit wouldn’t be able to accommodate sudden schedule changes, and I’ve made my peace with that, making other arrangements for those times when I’m left without a ride.

But there’s a darker side to this issue. You see, for a service that is tailored to the needs of disabled people, paratransit is surprisingly unresponsive to some of our most basic needs. I have migraines and chronic pain, neither of which are in the habit of giving me 24 hours’ notice before they strike. Since I can’t always travel when dealing with severe pain or nausea, I find myself cancelling trips at the last minute more often than I’d like. Agents sometimes grumble, but once I explain, they don’t penalize me.

At one time, though, this was not the case in my city. A friend and inveterate paratransit user remembers a time when cancelling at the last minute was always penalized, regardless of the reason. Missing too many trips could result in suspension, which is a scary thought for people who rely on paratransit to take them to important appointments. It took considerable advocacy from the disability community to make the city realize that an inflexible service for people with disabilities made no sense whatsoever. Our lives are complicated, and we can’t always bully our bodies into cooperating with us. A service that doesn’t bake this reality into its policies serves no one.

Welcome to the Margins

I’ve always identified as a marginalized person, simply because having multiple disabilities seemed to place me well within that category. Not until I took paratransit did I get a glimpse of what being marginalized could look like. Every day, I meet clients who are so far on the fringes that it feels as though we occupy two different worlds. Some can’t communicate verbally, and struggle to make themselves understood when a driver goes the wrong way, or drives right past their house. Others love to chat, but are ignored or grudgingly tolerated by drivers and clients alike, whose patience and compassion have either eroded over time, or were never present at all. Still others are struggling with sudden injuries and medical crises that have permanently altered their lives. I’ve listened as clients howled with pain, trying to maneuver themselves into high vans and buses. I’ve heard seniors apologize profusely as the driver buckles their seatbelts, humiliation colouring their voices. I’ve sat quietly by, helpless, as a client tried in vain to engage their escort in conversation, each overture rejected. I’ve cringed in my seat as a nonverbal client screamed in pain, or distress, or some other violent emotion I couldn’t decipher, while the driver focused on the traffic ahead.

No doubt these clients live happy, fulfilling lives, and I’ve chatted with enough of them to know they are just as interesting, warm, and spirited as the rest of us.

But, in the confines of those vehicles, it can be hard to forget about the margins that hold them in place. It can be hard to get over the fact that I’ve ignored people like this myself, when having a bad day or feeling irritated by something else. It’s impossible to pretend I haven’t played a part in the marginalization of at least one of these people, out of fear or ignorance or a desire to be left alone. It’s hard, in other words, to praise the progress we’ve made when confronted so frequently with how far we still have to go.


There are many things I appreciate about paratransit. Door-to-door service means I feel safe, even in dangerous neighbourhoods. I can avoid pitted sidewalks and inaccessible areas. If I don’t know the route to my job interview or my doctor’s office, I can still get there. My abysmal outdoor mobility skills don’t completely constrain my life.

By and large, paratransit services appear to be run by compassionate people who really do care about managing it well. They want you to get the times you asked for. They care if they pick you up outside your window. They show empathy when you’re in pain, and they’re happy to help where they can.

Still, we mustn’t get complacent. Paratransit has many deeply-rooted problems, and since it fills service gaps for so many people, we need to fix what we have rather than tearing it all down in a fit of cynicism, or dismissing those who still use it.

Now that you’ve reached the end of this post, I hope you’ve offloaded a few assumptions and re-evaluated some stereotypes. I hope you know that there is no archetypal paratransit user. There is no typical use case. There is no neat, tidy template into which you can shove those of us who, for one reason or another, need a special service to get around.

Whether you’re a paratransit user, an employer, an educator, a social worker, or a paratransit staff member, I hope you come away with plenty to think about.

Got some thoughts to share? I think this post calls for a lively comments section, don’t you?

Singing up the Mountain

There’s a piece of wisdom I’ve often heard, though I’ve never traced its origin:

In life, we’re all just hiking up the mountain. You can complain about how your feet are sore, or you can sing all the way up. Your choice.

I’m no champion of relentless positivity. I maintain that, for people whose brains are wired like mine, mantras and affirmations bring on more depression than inspiration. I don’t wear rose-coloured glasses well, and even my most indulgent friends remind me to watch my pessimistic streak.

Yet, the idea of life as a long, mandatory hike appeals to me. Some will have an easier time than others. Some will find the path to be wide and accommodating, designed for their every need and wish. Others, especially those who represent at least one minority, will find the hike more arduous. Perhaps the path is narrow and winding. Perhaps your equipment is in rough shape, and you don’t have the means to upgrade. Perhaps your way is obstructed by treacherous pebbles that will send you tumbling if you’re not careful. Perhaps it’s littered with concerned strangers telling you to turn back, choose a less ambitious path, or adjust your pace to a speed they consider more appropriate.

Whatever your mountain looks like, whichever obstacles you might encounter, only you can decide how best to climb it. You can take advantage of the wide, welcoming paths, never sparing a thought for those on more dangerous journeys. You might decide to stray from your comfortable stroll to shift a boulder or clear a trail for someone else. If, like me, your hike is rocky and unpredictable, you may want to contribute to a large-scale effort to make the hike safer and more equitable for everyone who is stuck on this mountain with you. (This mountain is yours. There is no right way–only your way.)

There is another choice to make, and as I experience one of the most trying periods of my life, I’m thinking more often than usual about this mountain of mine. There have been times—and I’m sure there will be more—when climbing felt natural and simple. Boulders were moved from my path by forces much stronger than me. Fellow hikers let me lean on their broad shoulders. The map was clear. I knew where I was going and how I’d get there.

At this moment, my landscape is much more uncertain, and I am tired. My feet are sore. My canteen is nearly empty, and my fellow hikers carry burdens even heavier than my own. I can’t hear myself think for the struggles around me, and my desire to broaden the path for others is tinged with despair at my own sad smallness.

But as I write this, as I contemplate a path that has never seemed less welcoming, I know that it’s time I started singing again.

My song might falter while I cling to jagged places. Tears and frustration might dampen its beauty. Sometimes, I’ll be making up the lyrics, or humming nonsensically, because damn it if I haven’t forgotten all the words.

But I don’t know of any other way to keep climbing.

So I’m gonna sing my way up this mountain. It won’t be pretty, but it will sustain me. It will have to do, because turning back? Giving up? Slowing my step to suit someone else’s comfort? These aren’t options—not for me.

Yes, we can still complain that our feet are sore, that we are tired, that we can’t read our maps. These admissions are valid and necessary. We will need to pause, rest, drink some water, lean on the nearest shoulder.

But whenever we can, wherever we can, let’s not forget to sing.

The Empathy Gap: When “Been There, Done That” is not Enough

As someone who has been told several times she is too empathetic to survive in this harsh world, I assumed I knew a lot about empathy. I never pretended to know how to kindle it in others, but I rarely had difficulty placing myself in even the most unusual positions to investigate all sides of an issue. While this tendency to favour the empathetic response is often involuntary and sometimes overwhelming, I always viewed it as a net positive. Surely, by being such an effortlessly empathetic soul—if not an effortlessly kind one—I must be adept at feeling and demonstrating compassion for others, especially when I’ve walked in similar shoes. Since I’m privileged to be trusted with so many personal stories of struggle, my well-ingrained empathetic response was one of the few traits about which I was fully confident.
Like so many of my long-held and cherished assumptions, I ran into compelling evidence that I was wrong. What is more, I should not have needed a formal study on the empathy gap to convince me; my own negative experiences with the disability community should have been sufficient. According to the authors of this study, the common belief that walking in someone else’s shoes ought to inspire compassion and even leniency is statistically inaccurate. This might not feel true at first, but the more I pondered it, the more sense it made.
Take this example from a few years ago, when I was beginning to find my place in the disability community: An acquaintance, who lived with physical and mental disabilities, was finally able to obtain permanent, fulfilling employment. I expected he would dedicate some of his emotional resources to encouraging others who had not yet reached that goal, or at least affirm that the struggle is, in fact, real. Within months of his triumph, however, he was already cutting fellow disabled people down, suggesting that aspiring workers should simply try harder, and campaigning to cut benefits meant to help those aspiring workers survive while they continued their job searches. The years he had spent searching for his own job, the discrimination he had battled, the pain he had suffered—he had either forgotten them altogether, minimized their power, or attributed his success to superior mettle. Whatever the reason, I drew away from him in shock and disappointment, unable to believe someone could be so hypocritical and heartless.
The idealist in me is loath to admit it, but his response wasn’t just statistically normal. His response, extreme though it was, is one I see in most people I know, including my oh-so-empathetic self. I’m working to exercise compassion and empathy more consciously and intentionally, but I still catch myself dismissing or minimizing someone else’s experiences on the bogus basis that I’ve been there, I’ve done that, and I’m on the other side of it or, at least, I’ve learned to shoulder it. Meanwhile, the nondisabled people I know are more likely to listen attentively and judge less readily, because they have not worn those shoes and do not feel qualified to do more than be supportive. You will find far too many people, disabled and nondisabled, who are quick to judge a situation even and especially when they have no knowledge of it, but most people know when they’re out of their depth, and won’t pretend otherwise.
Now that I’ve been a multiply-disabled person for decades, and worked in a disability-adjacent field for a few years, I am forced to confront the reality that lived experiences don’t automatically result in increased compassion and empathy. In fact, disabled people and those close to them tend to err on the side of harshness, reasoning that they or someone they know managed to “overcome,” which means they have little or no sympathy for anyone who is less successful. There’s a well-worn joke in the disability employment field about how case managers with disabilities are the toughest, and for the most part it checks out. Disabled case managers, and those with disabled family members or friends, may have more knowledge and may make fewer generalizations on average, but they are also likely to say something like “I was able to do this, so why can’t you?” When I wrote about my fear of blind people, this is the core of what I was describing: nondisabled people typically take me at face value after a while, but disabled people often seem to be sizing me up. In an ugly and ironic twist, I have caught myself sizing up my clients in precisely the same way.
As is my custom, I thought about calls to action before sitting down to write this post. I dislike bringing up an issue without pointing toward potential solutions, and this is no exception. Unfortunately, there doesn’t seem to be much direct action to be taken against the empathy gap, besides acknowledging it exists and fighting the instinct to judge, give unsolicited advice, or condemn when we encounter someone who is wearing shoes very like our own.
When you feel empathy, ask yourself the hard questions: Is this a pure feeling? Am I using my past experiences to offer guidance and validation? Is the advice I’m giving, the story I’m telling, the wisdom I’m dispensing welcome? Solicited? Needed? Useful? Am I sharing understanding, or centreing myself? Do I have any right to speak to this situation at all, or am I talking when I ought to be listening?
I’ll close with insightful advice from the authors of the study I referenced earlier. According to Ruttan, McDonnel, and Nordgren, it’s best to get out of your own head, place less emphasis on your individual experiences, and focus on the situation in front of you. If it helps, think of all the many people in the world struggling with the same burdens, instead of zeroing in on your personal journey.
Armed with this knowledge and these strategies, I hope we can all put our empathy to good use, and grow into a more supportive, less judgmental community. Come join me!

Trepidation and Triumph at CSUNATC2018

When an exceedingly kind friend offered to be my full-time sighted guide for 2018’s CSUNATC conference, I recognized that I was being offered a unique opportunity that could not, under any circumstances, be passed up. I’d spend a few days in idyllic San Diego, learning about accessible technology and basking in the company of a long-time friend whose social and tech savvy can’t be overstated. She promised to help me navigate the conference, escort me to presentations, and provide networking opportunities I’d struggle to obtain on my own. I was elated. I was grateful. I was excited!
I was also terrified.
You see, dear readers, the word “introvert” was coined specifically for me. While I enjoy a rich social circle and do well when representing employers at special events, high-energy occasions like conferences are about as frightening to me as a nest of angry wasps. In fact, if I have to attend a networking event outside of an employment context, I think I’d rather take the wasps, and that’s saying something. Excessive noise, bustling crowds, and unfamiliar environments combine to create a horrifying mix, and nothing but my relentless quest for self-improvement could make me brave it. (Meeting one of my best online friends helped sweeten the deal, but only slightly.)
I knew how fortunate I was to be attending CSUNATC2018, and I felt the appropriate level of eagerness, but part of me was sure I’d need several barrels of courage to manage. For if there is one thing that makes me more uncomfortable and cagey than large-scale, international networking events, it’s being around large numbers of blind people.
Yes, readers: I am afraid of blind people, especially when they get together, and attending CSUN would demand that I not only confront that fear head-on, but that I ask myself, finally, why the fear exists at all.
The gist is this: I went to CSUN to learn about tech. I learned a little, and certainly enjoyed the presentations, but most of the education had less to do with the accessibility world, and more to do with deeply-rooted insecurities so entrenched that I’d forgotten what it was like to question or even acknowledge them.
If you’re interested in my journey of self-discovery, stay with me. If you hoped to read all about promising new tech, I’m sure there are many excellent write-ups by people much better-versed on the subject. Either way, enjoy!

“Let’s play ‘count the blind people!’”

As we weave somewhat drunkenly through the airport, dragging unwieldy luggage and trying not to trample anyone, my sighted guide chatters blithely about how many blind people she sees going by.
“There’s another one! I think that’s the seventh I’ve seen already.”
“Oh God.”
“What?”
“I’m legitimately afraid of blind people. I mean, they’re okay in small groups, and I love them as individuals, but when we all get together, it’s … I just don’t like it.”
My friend is too gracious to pursue the matter, but it becomes obvious soon enough that my mobility demons, which I’d warned her of previously, are out in full force.
My cane grip must be all wrong. My posture, surely, couldn’t be close to proper. I’m leading with my right shoulder, which is a problem I’ve never been able to correct. Do I ride escalators in a weird way? Am I the only one who doesn’t know print numerals well enough to operate an elevator without brailled numbers? Does it show that I’ve received so little orientation and mobility training I’m not even sure if my rudimentary indoor travel technique is right? Is everyone judging me? Am I a fraud of a blind person?
Oh God, everyone’s definitely judging me.
I want to go home now.

“Let’s get oriented!”

I attend a small orientation tour to learn the hotel’s basic layout, reasoning that I’ll pick the information up more quickly if there aren’t too many people around me. But, as we meander along, passing various significant locations, I lapse into a fog of panic. There is no way one cursory jaunt around this massive hotel will tell me everything I need to know. The only orientation training I’ve ever received was highly specific and route-based, meaning it did not teach me how to master new environments through discovery. I have never wandered in my life—at least, not willingly. Getting lost for fun, exploring, taking a look around … these aren’t my style. Meanwhile, every blind person around me seems to have a mystical sixth sense or, if they are as lost as I am, it doesn’t trouble them. The atmosphere is effervescent, and I feel like an intrusive rain cloud that has accidentally splattered into an unsuspecting sun puddle.
What the hell am I doing here? Who do I think I’m kidding? This was not made for people like me.
I really want to go home.

“You’re not alone. Also, have a tissue.”

It’s been a long day, though for the most part a pleasant one. I’ve listened to enthusiastic Microsoft employees laying out a new and encouraging direction for Windows 10 and its associated accessibility features. I’ve attended a fascinating presentation on disability services departments in academic institutions. I’ve even discovered that the GPS app, Nearby Explorer, has innovative new features to facilitate indoor navigation. My sighted friend gives me sighted guide when I need it, introducing me to what feels like half the world along the way. She makes me sound like someone worth knowing, and I try to keep my impostor syndrome on a short leash. To my shock and delight, people admit to reading my blog—and liking it!
(So, it’s not just my mom and five friends? Cool!)
But now I sit, curled on my bed, offering the less flattering bits of my life story to complete strangers. One of them is an endlessly patient blind O & M instructor. I’m afraid of O & M instructors. (Are you sensing a pattern yet?)
They listen to me ramble despairingly about the inadequate skills training I’ve received; how out of place I feel among more competent blind people; how I am convinced I’m the only one who has ever been this useless at my age; how I must be a uniquely embarrassing failure; and how I’m afraid I will never, ever be anything more than I am right at this moment. In my self-effacement, I remain oddly verbose.
My equally patient sighted friend quietly passes me another tissue, putting her arm around me. This only makes me cry harder.
Then, the two compassionate blind strangers in my hotel room explain that they, too, have struggled. The instructor tells me that I’m far from alone, that it is possible for me to achieve the skill level I desperately want, and that I need not be so willing to let “I’m afraid” be what stands between the life I want and the life I have. Besides, she points out, plenty of blind people are where I am; they just choose not to put a fine point on it. For other blind people out there, the activities I find easy may seem like insurmountable challenges, and vice versa.
“Most of the people who intimidate you by going on about how good their skills are probably have something to hide.”
“I guess that does make sense.”
I plumb deeper, describing all the gaps between the talented and competent professional I know myself to be, and the bumbling wreck my brain insists I am. I was never taught to cut a steak in a way that made sense to me. I hold utensils in an unconventional way because the “normal” way has always felt clumsy. Sometimes, I simply don’t leave the house because the anxiety of existing in my skin is too much.
And, to my genuine shock, I am not alone in any of these things.
“But … why isn’t anyone talking about this?”
“We’re all too busy impressing each other, of course.”
“But I thought I was, like … degenerate.”
“No! You can be better. You can go higher. But you’re by no means the only one.”
“But I’m scared.”
“So was I.”
I am telling strangers the most intimate, shameful pieces of my long-buried trauma. I am exposing, to myself and to people I barely know, why I am so terrified of other blind people. I am opening up to unknown quantities in a way I’ve never done, not even with my friends, my family, myself.
Least of all myself!
And I am not afraid.
I am embarrassed and bemused and a little curious about what it is about conferences that fills you with the insatiable need to connect …
But Good God, I am not afraid.

“Just trust yourself.”

My default state, especially when dealing with new experiences, is “What do I know?”
Several times throughout the four days I spend at CSUN, my friend and I take a wrong turn of some sort, and something in the back of my mind insists we’ve made a mistake, gone the wrong way, gotten mixed up somewhere. Each time, I ignore it.
Each time, I am right.
Each time, my friend grows more playfully exasperated.
“Meagan, you should really try trusting yourself. You know things!”
“I just usually assume I don’t. Like, what do I know about this place?”
“You have good instincts, though. You should listen to them.”
Slowly, tentatively, I begin cataloguing the many instances over the years when my gut has stirred itself to alert me of some poor decision or wrong turn. In every case, if someone I perceived to be more knowledgeable than me disagreed, I became silent at once. Now, after more than a decade of systematic suppression, I don’t even consider speaking up.
Of course other blind people know more than I do.
Of course sighted people know where they’re going.
Of course I’m unqualified. Inexpert. Silly.
I can’t control the fact that I’m clueless about most things.
Or is this a choice I’ve made, one I forgot to unmake?
Is anyone telling me I’m useless, or have I been doing that to myself all along?
Heavy thoughts for a languid California afternoon!
But then, this does seem to be the week for them.

“Yes, it’s scary; and yes, you’re going to do it.”

Thump. Whir. Thump. Whir. Thump.
“What the hell is that?”
“That’s a door.”
“I don’t think we have these where I’m from…”
As it turns out, automatic revolving doors are much more frightening than they sound. Revolving doors are irritating enough; having once been stuck in one, I feel personally qualified to judge. The automated feature brings a whole new level of nightmare fuel, though, especially when you don’t have a clear understanding of how it works. All I could hear was an ominous thumping sound as the door thwacked repeatedly into something as it went round and round at what I considered an alarming speed.
I was open to trying it out, particularly since I was filled with new resolve and I had an O & M instructor with me once again. However, when she described the procedure, which involved me “sticking [my] hand in there so the door can hit it,” I balked a wee bit.
By “balked,” I mean I stood there for what must have been ten minutes, coming up with all the reasons I definitely could not—would not—attempt this.
Finally, I gathered all my courage and approached the door, only to have it hit me squarely in the face.
A little shell-shocked, hiding treacherous tears, I retreated and tried to regroup. Meanwhile, the O & M instructor, her blind friend, and my sighted friend stood by just as patiently as before, acting as cheerleaders and accountability officers in equal measure. Surrounded by all the (positive) pressure, I went for it.
As I leaned heavily on the door and followed it in a dizzying circle, one of my blind companions ran along behind me, shouting jubilant encouragement. It was rather like going on your first water slide, with your proud elder sibling shooting along behind you, utterly thrilled on your behalf.
Such a small thing, really, going through a door. Ridiculous, even. I’m twenty-three, for heaven’s sake. I’m an employed, educated, mostly-functional adult.
But that day, that damn door was everything.

“One more time before you go?”

On the day I was due to leave for home, I tried to cram as much as I could into a few too-short hours. I visited the exhibit hall, demoing a Braille tablet and expressing horror at how loud those new displays are getting. (I compared the scrolling sound to a very angry spider.) I met more people, flexed my extrovert muscles, and even handed out a resume to an accessibility company that was hiring overseas. Just to cap off the quintessential California experience, I drank a hellishly expensive juice blend and caught a few more rays of sun.
Feeling brave, I attempted to travel a little more independently, and promised a handful of new acquaintances I’d connect with them so I could share my writing and social media knowledge. This was a huge step forward, since I find it almost impossible to speak highly of myself outside of job interviews and cover letters.
Just as we were poised to leave the hotel, my sighted friend suggested I truly conquer that automatic revolving door, just to prove to myself I could.
It was tricky, and I grew progressively more nervous as concerned sighted people crowded around, hindering more than helping.
But, dear readers, I did it.
Twice.
Willingly.
As I came through the door the second time, more joyful than I felt was socially acceptable, my friend literally jumped up and down with sheer happiness, celebrating so loudly I could hear her through the door.
Most people might not understand why this tiny feat was important to me, and few people would appreciate the symbolism of it.
But she got it.
And, for the umpteenth time that week, I remembered: whatever I reveal, whatever I admit to, however I might struggle, I am not alone.
I never was.
And you know what?
Neither are you.