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.


Let’s Get This Over With: A Love Story

Exactly one year ago today, I met a new friend for a casual evening of food and conversation. We had exchanged several text messages and met casually a couple of times, but we didn’t know each other very well at all. I assumed him to be a stand-up guy—we had a few mutual friends who vouched for him—but that’s all I knew. When asked by friends and family whether this outing was a date, I protested that I was still grieving over the devastating dissolution of a 4.5-year relationship (absolutely true) and was in no state to be dating anyone, much less a near-stranger. As the evening progressed, however, and an innocuous meal turned into an entirely too romantic walk along the river valley (the sun was setting, the atmosphere was intoxicating, we didn’t really have a choice in the matter), I realized, quite abruptly, that this was, indeed, a date.
Faced with the prospect of opening myself to a new person so soon after being mistreated by someone else, I began to panic. I couldn’t possibly be ready for this! I had so many problems! My mental health was at one of its lowest points, and that’s saying something. I was perpetually exhausted, (I had new-job syndrome), and nursing emotional wounds that are still healing themselves one year later. My moods were unpredictable. My emotional landscape felt jagged and chaotic. Most days, it seemed as though I was being held together by threads so frayed and fragile they’d snap at the slightest provocation. I was an undeniable mess—not an appealing or interesting mess, the way a million colours scribbled on a page can be beautiful in their own nonsensical way. No, I was more like the mess you shove hastily into your closet when company comes knocking—the kind you pretend doesn’t exist and continually refuse to sort out because it’s too frightening. If you opened that closet door, you just know everything would come tumbling out.
That, dear reader, was the version of me trying to decide whether I was prepared to pursue a new relationship.
Certain that I had stumbled into a misunderstanding and determined to set the record straight, I did what any sensible gal would do on a first date: I sat down on this near-stranger’s couch—and an attractive stranger he was, too—and told him everything that made me undatable.
Yes, that was my first-date strategy: reveal every conceivable shortcoming, cover every awkward topic, explore every taboo, and excavate any past mistakes that would disqualify me as a suitable girlfriend. Lay it all out, get the unpleasantness out of the way, and he’ll balk, right? Surely telling him all about my multiple disabilities, my mental illness, my dubious track record with romantic relationships, my spectacularly poor choices, my insecurities, my unwillingness to ever have children, my overwhelming fear of failure—all of these would definitely scare him off, yes? In the name of honesty, I dredged up everything I could think of off the cuff that would make him retract his interest so I wouldn’t have to deal with big, scary decisions.
In short, I handed him every reason he’d ever need to call it quits before we’d even begun … as one does. (Everyone tries this on the very first date. This is a completely normal approach. I’m not currently laugh-crying as I’m writing this. Nope.)
Those of you who don’t know me very well may think you know where this is going. He was caught off guard, improvised some polite and sympathetic response, and led me gently to his door. When a woman implies, without an ounce of subtlety, that she is a disaster on legs, just thank the universe she’s not wasting your time.
Those of you who do know me, of course, will know that’s not quite how it happened. Instead, he sat quietly and listened while I gave him my spiel. He asked a few respectful questions, provided the odd empathetic comment here and there, and waited patiently until I was finished.
“So…okay…I’m sorry I dumped all this on you, but I really need to know. I need to know if you can handle all my … stuff. Otherwise, there’s just no point. Any guy I’m with has to be okay with my disabled, chronically ill, foolish self.” (For those of you fuming at my excessively self-deprecating portrayal of disability and chronic illness…just hang on. I’m getting to that.)
“Yeah. Of course. I think it’s great that you told me all this now. It’s brave to tell me, and it’s good information to know.”
As it turns out, not only did this remarkable creature have a disability of his own (moderate and mostly invisible), he was happy to explore romance with someone who had a handful of fairly serious problems, as long as I was willing to be honest about them. Exposing everything in one go, on day one, had the opposite effect you might imagine. Far from deterring him, it actually encouraged him to trust me and seemed to make me even more attractive to him. With everything on the table from the get-go—and yes, for those wondering, he did reciprocate by telling me many of his own struggles that night—we went into our tenuous relationship knowing there would be few surprises and no unnecessary anxiety about whether we were putting on a good face for each other.
Naturally, there were some who were horrified by what I’d chosen to do.
“You talked about all that stuff on the first date? Were you actually trying to scare him away?”
On the other hand, many others were pleased to hear that my impulsive strategy had worked, and a few even stated they’d like to try it for themselves, perhaps more gracefully than I had, but with the same unflinching sincerity.
“It would be kind of nice,” some said, “not to have to worry about them ‘finding things out.’ The slow reveal, especially with invisible disabilities and mental illness, can be even scarier than just spilling it all out at once.”
There was another latent benefit to depositing my life story into the lap of someone loving and respectful: I was reminded, once again, that my disabilities, illness, and various other attributes don’t make me undatable. They may present significant challenges, but they are not objects of shame, ridicule, or guilt. Choosing to date me even with full knowledge of my broad range of atypical challenges was an act of faith, perhaps, but never of charity. My partner wasn’t doing me a favour by agreeing to “handle” these things. I wasn’t “undatable,” and never have been.
Today, as I celebrate my first anniversary with a partner I have come to respect and adore, I appreciate the many ways in which our story could have veered into much darker territory. He could have been repulsed by what I’d disclosed. He could have promised he could handle it and realized that wasn’t really true. He could have used the sensitive information I gave him to do me harm. Any number of catastrophes could have resulted from the way I handled our first date. Reeling from exhaustion and pain, I wasn’t in the most stable state of mind, and I fully acknowledge that if I’d been in a better place emotionally, I may have handled this quite differently.
All this has taught me that the recipe for a healthy relationship requires trust and forthrightness from the very beginning. Even if you don’t present your prospective partners with bulleted lists of all your issues—and I don’t generally recommend that you do what I did—it’s essential that you feel comfortable around a person you’re planning to date. Romantic relationships place us in vulnerable positions, and if you don’t think your partner could handle how ill you get during migraines, or how much help you need when trying to identify objects you can’t see, you should probably keep looking. In the meantime, remember that while there may be many people out there who aren’t right for you, you deserve to find someone who is.

The Sanctity Of Vision

There appears to be consensus among humankind that blindness is an objectively undesirable fate. I’d tend to agree, since while I live a full, satisfying life with blindness, it’s not a circumstance I’d necessarily have chosen for myself if someone had given me a say. I grew up in the shadow of pity, outdated ideas, and low expectations. More than once, strangers have insisted they’d be completely incapacitated if they lost their sight, even temporarily.
Not until adulthood did I comprehend society’s primal aversion to blindness. It goes beyond the ineffable fear of being disabled, straying into a territory governed more by bone-deep horror than reasonable discomfort. Of course most people wouldn’t welcome the thought of becoming disabled. Sight is a primary source for sensory input, so people’s instinctive panic when contemplating blindness, even as an abstract concept, falls within the lines of what I’d consider logical.
What I struggle to understand is the extent to which so many people, even medical professionals, avoid blindness at all costs. After a few people had expressed, to my face, the opinion that they’d rather resort to suicide than live without sight, I began to realize that vision and quality of life are inextricably linked in ways I, a person who has been visually impaired from birth, cannot possibly imagine. As it turns out, while I’m out there enjoying my life, people I pass on the street are thinking of me as someone who isn’t really living at all.
The idea shed its abstract quality when I met my dear friend Alicia. As an infant, Alicia had her eyes removed to save her from an aggressive cancer that, if left unchecked, is often fatal. Eye removal, while drastic, seems like the best possible choice—maybe the only choice—when confronted with the possibility of death, but not everyone saw it that way. Alicia’s journey through cancer and blindness has taught me that far more than the sanctity of life, the sanctity of vision is king.
This is her powerful story, in her own words. I hope you will read it, put aside primitive assumptions, and re-evaluate the way you perceive those of us who don’t have vision but who do have life, in all its richness.

Off and on while I was growing up, I heard the claim that society fears blindness even more than cancer. I think the first time I heard this phrase, it was based on some study that had been done–a national survey of some kind, but I was young enough at the time that I didn’t inquire into insignificant details such as sources or methodologies. My youth was only part of the reason I disregarded the information, though. Just as strong was the fact that I found this statement unbelievable. How could people fear blindness, something which can be lived with, over cancer, something that can so easily take one’s life away? Impossible…Or so I thought.
My rude awakening has come in various forms over the years. The first incident occurred in 2002. I had been considering having a tubal ligation, because I already knew I did not want children. I certainly did not want to pass retinoblastoma, the cancer I was born with, on to a child. At an appointment with my ocularist, he told me about a baby undergoing treatment for this same cancer. The doctors knew that the amounts of radiation being given were likely causing brain damage to this child, but both they and the parents refused to consider the option of removing the child’s eyes. Risking brain damage, not to mention leaving cancer in an infant’s body, all because the doctors and parents feared blindness so much? I was devastated. I cried for several hours, and made up my mind that very day that I would have my tubes tied as soon as possible. There was no way I was having any child of mine treated in a medical system that valued vision over life itself. I don’t think I realized until that day the tremendous service my parents had done for me in making the choice they did to have both of my eyes removed as an infant rather than leave cancer in my body. My respect and gratitude to them for that choice increased by leaps and bounds that day. Only then did I learn that they had actually had to push my medical team to do this. I always thought it had been the recommended option, because it was the one that made sense and posed the least risk to my life. Apparently it was not, and my parents had to lay down the law as my guardians for this to be done.
After my tubal ligation, this issue moved to the back of my mind until 2015, when I attended a mental health First Aid training session. The trainees were split into groups. Each group was given a list of traumatic events that a person might experience in life, and asked to rank them from least to most catastrophic. Two of the items on this list included being diagnosed with cancer, and vision loss. As the results came in, every single group ranked vision loss as the most catastrophic event a person could experience, with cancer diagnosis placed several items down the list. Once again I was shocked, especially given that many of the people in the room knew me personally. Did they truly not understand that blindness could be lived with, and lived with well? Did they really pity me that much, or believe my life was that terrible? I asked to address the room, and made my case for why I truly did not understand these rankings. I hope I gave people some food for thought, but I’ll never know for sure.
People’s tendency to value vision over life has come to my attention yet a third time in the last few weeks. A dear friend of mine has been diagnosed with a different kind of cancer of the eye, ocular melanoma. The tumor, which is particularly large, rests behind and within her eye. Thankfully it has not yet metastasized, but if it were to do so, the most common place for this particular cancer to spread is the liver. As most people know, short of Divine intervention, once it reaches that organ, a person’s days are numbered. The options for my friend were to radiate the tumor and attempt to save the eye, or to have both the eye and the cancer removed in one surgery, with follow-up appointments over the years to make sure she remains cancer-free. She spoke with two nationally renowned cancer hospitals, and got two very different opinions. One cancer hospital said they would outright refuse to remove the eye, considering this option medical malpractice. Again, I was shocked, though by this time, I don’t know why. It wasn’t like this information was new to me. Removing cancer from a person’s body is medical malpractice, but leaving it inside the body in order to keep an eye is not? The other cancer hospital was forthright with my friend regarding the risks and side effects of radiation, even though it has advanced in precision and effectiveness over the years. This hospital’s staff was honest about the fact that even with this option, there is only a 20 to 30 percent chance of saving the eye. After much thought and prayer, my friend felt her best option is to have the eye, and thus the cancer, removed. Sadly, she has had to push her medical team to accept her decision. At least she is an adult, and is able to advocate for herself and choose what should be done to her body. Children born with cancer do not have this choice, and must rely on the discretion of a medical community that tells people that blindness is a much worse fate than cancer and its treatment.
This philosophy continues to stagger and upset me today as much as it did when I first became aware of it 15 years ago. What is it about our society that makes people fear blindness over the potential loss of life? What can we as people who are blind do to change these perceptions? Is there, in fact, anything we can do? Will this philosophy ever change? These questions will likely remain unanswerable. For my part, I can only do what is within my sphere of influence. In the case of the friend mentioned above, my example has been part of what helped her realize that vision loss could in fact be lived with, and that she can and will adapt. If I can help one person know this, then perhaps my own experiences are not in vain. I just wish there were more I could do to show the medical community this truth. Do I wish blindness on a person? Absolutely not. There are days when it is extremely hard to deal with, when I curse the lack of accessibility, or the transportation issues it causes. There are days I am sad not to see colours, or pick up a print book and read it. However, at least I am alive to have these problems.
All things considered, I would much rather have life, with the inconveniences of blindness, than no life at all.

“Wait…You Work Here?”

About a month ago, I was charged with covering reception at my workplace. We were severely short-staffed that day, but in small non-profits, everyone pitches in. Our clients are used to seeing unfamiliar staff members covering the desk, and it’s common enough that it never raises eyebrows. When I sat behind the desk, however, everything changed.
Instead of asking me questions about how to send a fax or print in colour, clients asked, often openly and a little confusedly, “Do you…work here?” Many of them avoided the reception desk altogether, knowingly violating protocol and striding past the desk without so much as a by-your-leave. They’d quiz other coworkers milling about in the reception area, even when those coworkers encouraged clients to speak to me directly. At times when I managed to engage with them and ask them what they needed, they expressed a preference for the intern who had been with us less than a month and knew maybe a tenth of what I did about how things are done. Although the intern was nervous and visibly uncomfortable, clients chose to wait and interact with her rather than dealing with a long-term staff member who had a visible disability. After only one short hour in reception, I realized that having worked at this non-profit for almost a year, sitting confidently behind the desk, asking people directly if I could assist them, and being dressed as professionally as anyone else working there—none of it mattered. People just assumed I was either incompetent or not an employee at all. (I don’t know whether they believe my workplace routinely allows non-employees to sit behind the desk for fun. I didn’t ask.)
In a move that was a little twisted even by the cruel universe’s usual standards, I was stopped in my apartment building a few days later by a fellow tenant I’d never spoken to before. I was clearly in a rush, walking briskly, and doing my best to ensure I wouldn’t miss my ride to work. Ignoring every signal I was blasting frantically to the world at large, this inquisitive woman started to pepper me with questions.
“Hi. Where are you going today? I see you leave here most days. Always wondered where you go.”
“I’m heading to work.”
“You work?!”
“Yes, yes I do.”
“Like, every day?”
“Five days a week.”
“At a small non-profit.”
“Oh! Which one?”
The interrogation probably would have continued, but I was able to extricate myself by pleading lateness and managed to escape before snapping at her with much more irritation than she’d have deserved. It’s not a crime to ask questions, and I’m not one of those who will eviscerate someone for daring to try it, but having strangers ask you where you go every day and the exact location of your workplace seems a little dodgy, disability or no.
As with almost every other disappointing situation I’ve experienced because of disability, I soon realized I was far from alone. While discussing the matter with others, I heard several accounts of blind people being mistaken for non-employees who had strayed into forbidden areas, or who were merely assumed incapable on sight. Sighted people are used to seeing us sitting at a piano or acting in feel-good, promotional videos, but a blind person sitting at a desk or standing behind a counter seems to be a bit more of a leap for them. Fellow blogger Blindbeader has been stopped twice now at her new workplace, where she was warned by strangers that she was going the wrong way and was trying to enter a secure area. Only when she flashed her security badge and explained she was an employee did the people in question re-evaluate their assumptions. Apparently, even a professionally-dressed, confident-looking blind person looks lost and out of place in a work environment, at least to some people out there.
This type of unconscious discrimination can have more serious consequences than mild annoyance and inconvenience. While working as an intake assistant at CNIB, I conducted most of my consultations with clients by phone, so they readily listened to and respected my advice without question. When they’d walk into my office and meet me for the first time, though, some of them, even people who were going blind themselves, would do an astonished double-take, hard pressed to believe the helpful, knowledgeable woman they’d spoken to on the phone was blind. My partner, who has a moderate eye condition that is sometimes visible, was frequently discriminated against at work in retail and food service fields, despite his capabilities. While working for a fast food restaurant, coworkers were quick to blame any mistakes on “the blind guy,” and management was a little too quick to believe them. When he worked at a computer repair shop, customers would request to work with a different technician, or complain about him to his coworkers, because they thought it glaringly inappropriate for a person with even mild vision issues to be employed there. Their complaints are perplexing to me, since his vision issues are minor enough that he doesn’t usually use accessible devices and never uses mobility aids. He’ll never drive, it’s true, but he can certainly repair your computer and even read your screen without help. To this day, reliving these experiences makes him uncomfortable and anxious, and it’s easy enough to understand why. Hard as we work to convince interviewers and supervisors we deserve to work alongside everyone else, we still have to face the hurdles put in place by public and peer perceptions.
I didn’t realize how prevalent this casual discrimination actually was until I entered the workforce at age eighteen. At one point, while trying to comfort a distraught mother whose teenage daughter had just gone blind, I found myself explaining to her that, no, her daughter’s life was not irrevocably ruined. Yes, she’d be able to go to school, and have a career, and be successful. In a moment of weakness for which I don’t blame her one bit, she burst out: “How would you know? You’re just saying that!”
“Actually, Ma’am,” I said as gently as I could, “I’m blind, too. I’m getting a degree, and I have good career prospects. Many of my blind friends are very successful in their fields. It’ll be hard, no question, but your daughter’s going to be okay.”
So, if there are those out there who honestly believe blind people are destined for lives spent at home being cared for by our unfortunate families, and cannot aspire to anything higher, it makes sense that they’d react oddly when confronted with blind professionals. All manner of superficial attributes make people seem more or less trustworthy and credible, right down to appearance and voice. Why, then, should it be shocking that a visible disability would, however unjustly, decrease a person’s credibility in a stranger’s eyes? It’s not fair, and it needs to be combatted, but it does make a kind of sense. At least, it’s no less illogical than thinking tall, deep-voiced people are more credible than short, higher-voiced people with the same qualifications and credentials. The world is a vastly illogical place.
My solution to this issue mirrors the one I default to in so many other cases: education, education, education. The more blind professionals are seen out in the world, the more accustomed to us society will become. People’s minds do change, and I know a few who, since having met me, have altered their perspectives on a great many things. No more would they stop a blind person in a hallway and automatically presume they don’t belong there. No longer would they avoid seeking help from one of us if they found us behind an information desk, or repairing their computers in a shop, or cooking their food in a restaurant.
As usual, the way is long, and slow, and sometimes painful—but it is, I think, the only way we have.

Let Me Be Generous

Earlier this week, a particularly trying driver took me to work. Exhausted from too little sleep and running dangerously low on patience, I listened as he prattled on about his “amazing” blind friend, with whom I must be utterly fascinated since all blind people are endlessly interested in each other, right? I explained how my phone’s GPS allowed me to follow along with the route, and indulged him when he asked, at least three times, “Where does it say we are now? … Now? …How about now? … Amazing!”
For this man, in fact, everything about me was amazing, from my university degree (a standard bachelor’s, nothing spectacular), to my full-time job, right down to the fact that I don’t live with my mother. He concluded that, like the afore-mentioned blind friend, I was a winning combination of blessed and, well, amazing. Due to my acute frustration and sleep deprivation, I was unable to appreciate his good nature and kindness, which I would certainly have noticed on an ordinary day.
The last straw came when we pulled up to my destination. As he assisted me with the debit machine, he skipped right past the “Tip Option” screen without asking me if I’d like to tip. Aware that cab drivers often do this instinctively—to the point where it stands out when they don’t try it—I had previously asked that he please stop at the tip screen. Ignoring my explicit instructions, he breezed right past it, and steadfastly refused to cancel and re-enter the transaction. Disregarding direct instructions when I’m letting someone else act as my eyes will inspire pique on the best days, and this was not my best day. By this point, the lack of caffeine and goodwill in my veins signaled that I should let this one slide. So, I let him go on his way, no doubt convinced he’d done me a kindness and blissfully ignorant of my annoyance.
Refusing to allow disabled people to express generosity is dismayingly normalized. Judging by the many conversations I’ve had with other disabled people on the subject, I’m far from the only one to find attempts at everyday generosity being rebuffed, sometimes forcefully, by all kinds of people. Even those asking for money on the street will sometimes push our money away, as though taking funds from disabled people would be a violation of their personal moral codes. Apparently, being homeless is still better than having a disability, and taking money from disadvantaged, less-fortunate souls is practically criminal. Who would accept gifts from such abjectly pitiable people, anyway?
I’m all too familiar with the prevailing narrative on disability in much of the world: anyone with a disability is disadvantaged, pitiful, and even cursed. People break the mould all the time, especially when they are accomplished enough to feature in inspiration-laden news stories, but no matter how successful we become, we are perceived to be worse off than nearly anyone else. The cab driver who laments he does not have enough money to feed his children will resolutely resist my offers of a tip I would otherwise spend on an overpriced latte I certainly don’t need. A person who does not have a place to sleep, food, or even a clean blanket is uncomfortable receiving support from me, even though I have every appearance of someone who is solvent, if not extravagantly wealthy.
There is a tiny nugget of truth in this stereotype, as with so many others. high unemployment rates, coupled with the extortionate costs of assistive devices and technology, mean many disabled people are indeed struggling financially. Some of us have incomes that are supplemented by government benefits, but most of us, myself included, are supporting ourselves without help. At the moment, my full-time job and freelance career are enough to give me a stable home, a nutritious diet, and the ability to afford the occasional luxury without compromising my student loan payments. That’s more than many of my nondisabled peers can say.
As with so many other disability-related issues, the problem runs more deeply than strangers who won’t take my money. I’ve written in the past about friends and family who, whether consciously or otherwise, shy away from allowing me to be generous. Whether they’re telling me not to help with difficult tasks or claiming they don’t want to burden me, even those closest to me are under the impression that I either have nothing to offer them, or at least should not be expected to give what I can. Having been raised in an extraordinarily open-hearted, unstinting community, the inability to participate in all the generosity around me was and continues to be a blow to my pride and spirit. My personality is characterized by a powerful need to give, and give lavishly, so any barrier that keeps me from doing so is emotionally devastating. While I do have people in my life who feel free to lean on me for support and will ask unhesitatingly for assistance whenever it’s needed, many others seem sheepish or even vaguely shocked at the very thought. It’s as though a voice inside them is saying, with not a little surprise, “You mean…*she* might be able to help *me* out? But that’s not how it’s supposed to go!”
I hope that, in time, strangers and friends will realize it’s possible to move beyond the paradigm where I am the helped and never the helper. I envision a society in which a disabled person’s tip or gift is seen as standard generosity and accepted guiltlessly. The world will be a slightly better, kinder place when people are open to the idea of a disabled person as more than a problem waiting to be solved or a good deed waiting to be done. In this, as in all things, I want to be no more and no less than everyone else.
Let me be generous. I have a lot to give.

Paratransit Is Bad (But Your Judgment Is Worse)

If you want to get a group of blind people to sneer derisively or rant passionately, simply mentioning the word “paratransit” will often do the trick. Paratransit, for those fortunate enough to be uninitiated, is the general term often used to describe specialized accessible transportation. Many cities offer this service, under several different names, to ensure that people who cannot take public transit can still travel. There is a very wide range of people who use these services, so they can be quite complicated to administer. Coordinating schedules is complex, particularly when life’s everyday interruptions throw a wrench into carefully-planned runs. As you can imagine, this creates an awful lot of frustration for just about everyone.
When I first signed up for paratransit, it was out of dire necessity. I was living off-campus for the first time, (I grew up in an area so rural I did not properly understand basic intersections until I was seventeen), and I needed a reliable way to commute each day. Due to less-than-ideal circumstances, I found myself living in a part of my city that was nearly impossible to navigate without sight. It certainly wasn’t pedestrian-friendly, transit was sporadic, and my options were severely limited without the ability to drive. At my roommate’s urging, I agreed to investigate paratransit.
Paratransit, I soon discovered, had its serious downsides. Drivers had a generous half-hour window for pickup, so I never quite knew when I would arrive anywhere. I had to arrange to be extremely early for everything, because I couldn’t predict how long the trip would be ahead of time. The same commute could take ten minutes one day and an hour the next, depending on the whims of the dispatchers. Scheduling was tricky and the rules were quite strict, such that abrupt schedule changes could rarely be accommodated. Even now, when I’ve been using the service for almost a year, I become anxious each time someone sends me a last-minute invitation to dinner, or I wake up feeling a migraine approaching. Since there are thousands of people using the system, my personal ups and downs aren’t met with much sympathy.
Worse still is the attitude of so many working for paratransit. While I only have firsthand experience with my own city’s system, the stories I hear are all variations on the same sad theme: disabled people’s time is neither valued nor respected. Paratransit is treated like a charitable service for which we should be quietly and reverently grateful, even though many of us pay well for it. So many seem surprised that getting to work on time is of importance to us (or that we work at all). Some appear to believe that disabled people only ever go out to attend medical appointments. Still others, mostly in administrative roles, are unmoved by the idea that, no, I can’t cancel my trips 24 hours before a migraine strikes. I don’t have that much warning. I’m human, and therefor subject to the unpredictability of my body. Disabled people are often plagued by medical issues, so the inflexibility of many paratransit services, where last-minute cancellations are penalized, suggests a startling lack of familiarity with and understanding of the very population they’re trying to serve. I am, therefore, disappointed to say that paratransit systems, in my city and elsewhere, are in need of major changes if they’re to be a viable option for disabled people with full, active lives.
Above all else, though, what make using paratransit hardest are the criticism, judgment, and snide comments of fellow blind people. Many who have had to depend on paratransit in the past speak of their transition to ride-sharing services (which not everyone can afford) or public transportation (which is not always an option) with a kind of triumphant contempt. They describe paratransit in terms so dismissive I wonder if they actually remember what it was like or if they simply had unusually terrible experiences with it. Blind people in my own city, some of whom have never even tried it, have such condescending attitudes toward it and toward people who use it that I felt as though even admitting that I use it would mark me somehow. Paratransit, I learned, was for desperate, dependent souls who are either too lazy or too incompetent to use “real” transportation. Further, some of these people actively discourage others from using the service, supplying hyperbolic horror stories that are sometimes third-hand. As I was following the long and drawn-out procedure to sign up, I was warned, again and again, of how huge a mistake I was making—so huge, in fact, that a three-hour daily commute on public transportation was supposedly preferable.
I’m pretty quiet about my use of paratransit services, but when a new acquaintance posted about her own struggles on Facebook, I paid attention to the comments she received. Many, like mine, were understanding and supportive: yes, it’s terrible, but it’s okay that you still choose to use it despite its flaws. A few, though, had a much different tone—the tone of contempt I mentioned earlier. Apparently motivated by their own misfortunes, these people seemed intent on judging anyone who uses the service by choice, as though any self-respecting blind person would get out there and learn how to use the damn buses already. After seeing this one too many times, I felt compelled to speak up at long last.
When a disabled person complains about paratransit, empathize with them. Give them advice if you have any that is relevant to them, and focus on being kind. Hold your judgment and—yes, I’m going to use the P-word, which I rarely do, so listen—check your privilege. It is a privilege to use something other than paratransit. It is a privilege to have the mobility skills and confidence to use public transportation. It is a privilege to live in an accessible location. It is an even bigger privilege to have the means to use ride-sharing services, which are financially out of reach for a lot of people.
I beseech you: next time you find yourself judging people who use paratransit, or cajoling someone into dropping it, stop and think about whether these comments will be productive or respectful. Does the person you’re talking to have personal reasons for using the service? Do they have other disabilities that have an impact on their travel needs? Do they have the skills and confidence to use public transport? Do they have the money to use ride-sharing services and cabs? Are they, like me, plagued by anxiety and a severe lack of outdoor orientation and mobility skills for various reasons? Is it, perhaps, none of your concern?
For me, and for all the people I know who willingly use paratransit and feel it is the best current option for us, do us a favour. Let us complain. Pat us on the shoulder and make comforting noises. Be there for us if we decide to switch transportation method. Do not, however, tell us yet another horror or conversion story. We’re frustrated enough as it is—after all, our ride is late again!

The Man Who Taught Me To Fish

Being disabled means having your competence questioned at every turn. It means accepting that your intelligence, your autonomy, your very worth are always up for debate by those least qualified to make judgments. It means, therefore, that you must be strong, whether or not it comes naturally. Finding this strength, this essential self-reliance, can come about in many ways. For me, one of the fortunate ones, the tools for independence were introduced early and often.

* * *

We kneel together on the thin carpet of my bedroom. My favourite cassette tape, a collection of fairytales, is in my small, tentative hand. Speaking softly, my father explains how to slide the tape into the player—gently, now—and places my fingers on “play.” As the opening music rings out and understanding of my new skill breaks over me, I can only smile widely enough to split my face, thinking dreamily of how delicious growing up can taste. It’s a small step, playing my own audio books, but the joy lingers.

* * *

Each time I learn something new–even something as mundane as, say, the location of straws at the Starbucks near my apartment—I experience a moment of undiluted triumph. Often hesitant and rarely overconfident, I am not the archetype of success some would wish me to be. Instead, I skirt the gaps in my knowledge and abilities with an unthinking ease bolstered by years of practice. While my blind peers pursue adventure and hone new skills for the sake of doing so, I hold my shameful passivity close to my chest, owning what is necessary and burying everything else. Showing weakness, I have learned, is a grievous sin; admitting I’m comfortable with where I am is worse. Even so, when I break this ancient habit and push my boundaries, I feel a thrill that once coloured each day of my childhood, when there was someone there to rejoice along with me. Of course he would still do so, if I called him on the phone and said “Hey, Dad, I learned a new route today.” Surely, my cheerleader is still waiting in the wings, should I ever need him.

* * *

We are traipsing through an amusement park in the sweltering summer heat. I am sulky and bored in that particular way of children. I’ve had my fill of rides and novelty food; I am ready for familiar surroundings and a good book. As I prepare yet another whiny entreaty—let’s return to the car, get a cool drink, pull out the Harry Potter novel I wish I was reading—Dad pulls me aside to examine a life-sized, intricate statue of a cow. It occurs to him that I’ve never touched a real cow before, despite having driven past them a hundred times. As he runs my hands over the statue, describing each part with astounding patience and enthusiasm, I realize I’m feeling just a little less blind.

* * *

The process of spontaneous discovery was a common feature of my childhood years. Seized by inspiration and vicarious wonderment, Dad would pause and encourage me to notice a truck, an earthworm, a bird’s nest. New kittens were placed delicately in my eager hands, and I was free—encouraged, even—to hammer in a few nails and help paint a wall. If it captured my interest, it was mine to touch and try and learn. Assumptions about safety and propriety and ability were seldom made. Mine was a world of discovery, because Dad had no doubts, no reservations, no unreasonable fears.

And so, I had no fears, no doubts, no reservations of my own.

* * *

“I’m just bad at math, okay? I’m stupid, I guess.”

Salty tears stain the Perkins brailler I’m using to hammer out surface area calculations. Slightly flummoxed by all the tears, Dad makes a joke about me rusting the metal brailler if I don’t stop crying. He coaxes a grudging laugh from me, but the levity doesn’t make the work any easier. I have sat before this useless tactile diagram of a cube for literal hours, convinced that I must be less intelligent than fellow students, all of whom had exclaimed that this unit was incredibly simple. I, a star student then, had trouble accepting this reality in which I was in need of help with my homework.

I look up to find Dad placing a wooden cube in my hands.

“I went to the shop and made you some shapes. I think your problem is that you’re not understanding the book’s diagram. I think this will make way more sense for you. You’re not dumb; I know you can understand this. See?”

Sure enough, as he points out each facet of the cube, telling me how they correspond to the ones on the page, something clicks into place. Suddenly, I’m finding surface area as easy as everyone else had, all because someone was able to teach in a way I could grasp.

I am not stupid after all, or terrible at math; I am just blind—blind, and very bad at deciphering diagrams, apparently.

* * *

Blindness has taught me to work more diligently than others. In my slow, steady climb, there is little room for surrender or self-doubt. On this journey, there is no room at all for giving up. When everyone else seems poised to give me an out, to say, “Well, Meagan, you tried your best; you can go home now…” I am compelled to reply in the same way each time: “Never.” The stubbornness and refusal to concede, (the very qualities that justly infuriated my father while I was growing up), are the sources on which I draw for support through each new hurdle.

When voices say, with stolen authority, “Meagan, you’re blind. You will never—“ another voice pipes up, strident even in its secret uncertainty: “Watch me.” Much as Dad must have cursed my inflexibility, I think he has grown to respect its power. He should, for I believe he is the one who gave it to me.

Dad taught me to fish, of course. I’ve been fishing since I was so small that my rod had to be tied to my life jacket. He taught me to cast and jig and reel in even the most unwilling ones. (He also taught me to respect the fish, never causing undue suffering or taking more than my share.)

But, as you may have guessed, he taught me to fish in other, less obvious ways. His unwavering faith in my personal abilities meant I was rarely allowed to think of myself as excessively disabled. I was not permitted to wallow in self-pity or allow anyone else to feel pity, either. Through patience and determination, my father convinced me that I am strong and capable—not constantly, but often enough to succeed. To this day, my dad is the person I think of first when I prove to myself, once again, that blindness doesn’t have to ruin my life or my career or my dreams. Whenever he describes something new or lights a much-needed fire under me, I remember and honour the joy of learning to fish—because at the end of the long, hard day, all I have is me. I have my father, among many others, to thank for making sure I’m a damn good person on which to lean.
So, thank the people who taught you how to fish, and those who remind you that you still know how. You owe them a lot.

Dear Facebook: We Need To Talk

Facebook, honey, we need to talk. Seriously. This very instant.

I think I’ve been a good and faithful servant—I mean, user. I spend lots of time with you, usually every day, and have done so for several years. I have continued to check in with you daily despite the useless updates, the bewildering user interfaces, the sudden and unsettling amendments to your privacy statements—even your silly app, which enjoys draining my phone’s battery and sucking down data as though it were water in the desert. Through all of your confusing, outrageous shenanigans, I have done my best to navigate your bizarre design and even tolerated your overabundant ads with minimal grumbling. (I really, really enjoy grumbling, so please acknowledge the magnitude of my sacrifice. … Are you acknowledging? … Good, thank you.) In fact, Facebook, I love you so dearly and so faithfully that part of my current career depends rather heavily on interacting with you. I’m a social media specialist, Facebook, which means I have to work with you—and like it!
But, dear Facebook, you’ve shown me time and time again that you never really appreciated me. Yes, yes, you’re “free and always will be,” I know. I get it. I’m the user, not the customer. I’m the product. You sell my oh-so-exciting online life for far more than it ought to be worth, just so I can skip intrusive “suggested” posts to get to the good stuff. It’s business, this is the new normal—blah blah blah.
Still, darling, you’d think I might be worth almost enough to you, as a loyal user and frequent poster, to warrant a reasonably accessible environment. You see, Facebook dear, my eyes don’t work, and as such, you are an unpredictable and cruel companion.
One day, some complicated function works, and the next day you’ve broken it—again. Your much-lauded image description software—you know, that feature that meant we blind people would be able to “see” pictures—thinks dogs are cats and cats are dogs and any woman wearing white is a bride. It invents children that aren’t there and sometimes throws in an extra person, just to keep us all on our toes.
(“You got married? Again?”
“No no, I’m just wearing a white shirt. As you were.”)

I’ve lived in valleys of despair and soared to dizzying peaks of hope, perhaps a little naively. When you kept your mobile site clean and relatively accessible, I rejoiced. Alas, I rejoiced too soon: many of the features I wanted to use simply don’t work. Back to the sluggish, semi-inaccessible and wholly-infuriating desktop site I go, then.
I sang your praises when you introduced artificially intelligent software that would describe images, and the publicity it generated was very exciting indeed! Back to earth I drifted when I realized that not only was it laughably unreliable, but you were actually making sighted people think their days of describing pictures (very short-lived—I’d just gotten people to start doing it) were over. So, thanks and all, but please stop telling sighted people they don’t have to describe their pictures, cuz they do, maybe more than ever unless they want me to congratulate them on the new cat-dog or ask how married life is treating them.
I reveled in the simplicity of your Messenger app, reasoning that if you were going to get us all to use it by brute force if necessary, it may as well work. But, Facebook, you managed to break even that, so that I can’t scroll with any efficiency and am forced to ignore a whole lot of pointless nonsense on my cluttered screen.

This is not healthy, Facebook. At this point, I am staying for the good times, as they say. Each time you break accessibility or introduce a troublesome new feature, I grit my teeth and roll with the punches. When I struggle to perform basic aspects of my job because something on your end is mysteriously broken again, I smile through the pain and soldier on. If time is short and I don’t have an hour to fiddle with two versions of a website and an app, I call a sighted person over to help, silently cursing my dependency.

Meanwhile, you announce your access team with much fanfare and profess your commitment. You whisper (or shout, as the case may be) reassurances into my weary ear, promising that all will be well.

But you know what, Facebook? I don’t believe you.

Do I expect any of this to move you? No, of course not. You have me in a corner, and I must continue to shoulder the constant issues you create. My job and social life depend upon us getting along.
That said, dearest Facebook, I don’t have to like it.
And you know what? I don’t have to like you, either.
There, I said it. I love you, but I don’t really like you anymore.

Put your money where your mouth is. Use the same level of force to direct your accessibility team as you do to ensure that customers—I mean, users—use your ridiculous apps. If you put a fraction of the effort you pour into, say, the like button into accessibility, darling, we’d have a very different relationship, you and I.

So, Facebook, I ask only this. Until you make real, lasting strides in the direction of genuine usability and accessibility, please don’t pretend you care, because I’m done pretending I believe you.

Yours, very grudgingly,
A girl with broken eyes (and a broken heart)