Let’s Get This Over With: A Love Story

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 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 mere acquaintance. 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.
Uh-oh.
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 was nursing emotional wounds that are still healing. 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 daunting. If you opened that closet door, you 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 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.
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 more of your time.
Those of you who do know me realize 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. Anyone 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 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?”
“Well…yes.”
On the other hand, many others were pleased to hear that my impulsive strategy had worked, and a few even confessed 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 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 would handle it and realized that wasn’t a promise he could keep. 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 dealt with this 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—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 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.”
“Where?”
“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.

I Miss My Bubble

There was a time, several years before I traded small-town life for my bustling urban lifestyle, when I believed the world was an essentially happy place in which to live. Ableism was a term I’d never heard, and even though I faced and recognized discrimination occasionally, it seemed far too rare to form a pattern. My community was a generally accepting, accommodating one, and I expected the rest of the world to reflect it. If I’d begun a blog back then, it would have adopted a tone that suggested most people with disabilities had little right to complain. Life wasn’t so bad, was it? My personal experiences certainly didn’t indicate that everything was terrible, and I, cozy in my cocoon, couldn’t understand what all the fuss was about. If you’d asked me about my place in the disability community, I’d have shrugged and said, “What community?” Blind people, in my limited view, were a largely grumpy lot, and I didn’t think they really had the right to be so.
Today, however, I’m as grumpy and disgruntled as just about everyone else. I’m not a combative or pessimistic person, but even I can’t escape stabs of despair and intense annoyance when someone congratulates me for living on my own, or navigating my workplace, or behaving as any woman my age would be expected to behave. I cringe when people try to explain my own disability to me. Ignorant comments on social media set me ablaze, even though I know it’s not productive. I experience regular urges to indulge in a primal scream or three. In essence, I find myself in a perpetual state of annoyance. Why must the able population be so silly? Discriminatory? Ignorant? Rude? Disrespectful? Why?
And so, burdened with this tiresome emotional landscape, I find myself longing for a simpler time, clichéd as that may sound. My soul yearns for a time when my attitude toward sighted people was almost universally positive. I excused even the most egregious behaviour in the name of understanding and empathy. I overlooked inaccurate and damaging viewpoints because I “get where they’re coming from.” I remained astonishingly cordial when confronted with statements like “I don’t see how you’ll ever get married and raise kids…” or “It’s a pity you’re blind, but at least you can sing…” and “How can you work?” I simply did not realize how poisonous these ideas could be. Mostly, I let them roll off my back, and since grumbling about them wasn’t encouraged, I shoved the hurt I did feel into a cobwebby corner where uncomfortable feelings go to die.
Now, I’m forced to re-evaluate my worldview. Much as I’d like to remain in my comforting bubble, I encounter too many first-hand obstacles to pretend all is well any longer. I’m learning, quickly but grudgingly, that yes: it really is that bad. No, living with a disability isn’t nearly as arduous as people imagine, but it still comes with a whole host of challenges. Further, I’m also learning that just because I haven’t come across a particular issue doesn’t mean it’s unworthy of consideration. The fact is, I’ve been lucky, and insisting that disabled people should take a chill pill is akin to ignoring my own reality, and theirs.
I’d be remiss if I didn’t mention the hysteria and unnecessary combativeness I see in the disabled community, of course. Some people seem to live for the chance to rant passionately about every imperfect able person they meet. It seems as though some of us have turned defensiveness into a learned behaviour, such that it’s become a knee-jerk reaction. Any attempts to bring empathy and nuance into the conversation are dismissed, sometimes with a vehemence I can’t imagine having the energy to muster on my best days. Our complaints are usually justified, but many of us, including me, are guilty of jumping to conclusions and making life more difficult than it needs to be. This is why I work so hard to cultivate an ultimately kind, measured perspective in my writing and my everyday life. To do otherwise goes against everything I am.
Even so, there is plenty to be upset about, and some days I don’t feel equipped to handle it all. A frightening brittleness accompanies me far too often, so that I feel as though I will either cry or snap if one more person grabs me without my permission or sulks when I turn down their assistance. I’m not sure when I became so volatile, but while courtesy and reason tend to win the furious battle inside my head, I expend far too much energy in the process.
I miss my bubble. I am tired and anxious and insufferably irritable, and I hate it. One of the things I’m unable to stomach is being in a bad mood for too long. Grumpiness and outrage just don’t suit me. I miss being able to shrug off even the nastiest comments and laugh at everything else. Surely there is a middle ground between priming myself for misery and retreating to a safe but unhealthy state of blissful ignorance. There has to be a way to pick my battles without feeling so desperately conflicted and exhausted.
I’m going to be okay. I know, from watching other disabled people, that time will bring growth, patience and security. Eventually, managing all of these burdens will become second nature, if not easy. I know I will find a place of peace. While I wait, however, I find myself looking wistfully backward.
I miss my bubble, but it’s not where I belong. One day, my heart will catch up with my mind. Until then, universe, grant me patience.

“Go Play With Your Friends!”

“Meagan, what are you doing over here by yourself?”
The daycare worker stood over three-year-old me as I crouched by a wall, well away from the groups of laughing children. I remember holding a toy giraffe (which I was pretending was a pony), and babbling happily to myself, weaving some far-fetched tale or other to while the hours away. I raised my head reluctantly but obediently; I was loath to interrupt my highly-enjoyable game, but I was a relatively respectful child.
She waited.
“Well? What are you doing?”
“Playing.”
“Put that down and go play with your friends.”
It’s astounding, really, the level of clarity this memory still holds for me. My head is full of fuzzy childhood memories, but this one stands out. If I concentrate, I can still feel the cynical amusement her comment had provoked—an amusement that was distinctly unlike what a child ought to feel.
“I don’t have any friends.”
How could she not know this? Was she not paying attention when kids turned their backs as I approached? Did she miss the very public incident when a toy crate was placed directly in my path in the hopes that I’d trip?
“Yes you do.”
“No, I don’t.”
“Well, go make some then.”
As she walked away, my child self felt absolutely nothing but relief: I could get back to my giraffe—ahem, pony—without further annoyances.
What I find remarkable about this memory is not the underlying theme of social isolation and bullying. Bullying had tapered off almost to nothing when I went to grade school, I was extraordinarily lucky, but daycare was somewhat different. I faced relatively little direct confrontation—I was certainly never abused or put in real danger—but social exclusion was at its height. No, what I always dwell upon is how very unaffected I was by all of it. Kids are all supposed to crave a peer group, but for whatever reason my rejected social overtures didn’t faze me. I didn’t try very hard, and once I realized it was basically futile, I retreated to the safety and endless entertainment that could be found inside my own head. I was aware on some level that this made me different, but I simply don’t remember being bothered in any way by it.
I was not a socially starved child, generally speaking. I was forever pestering my elder sister to play with me, enjoyed the company of adults immensely, and had a huge, welcoming extended family to keep me company during gatherings. If I had the opportunity to play one-on-one with accepting kids my own age, I took it quite contentedly.
Despite this, my introversion seemed to be a source of ongoing anxiety for the adults in my life. Daycare workers, teachers, consultants, and all manner of others concerned themselves with my social development, no doubt worried that a disabled child left to her own devices would morph into a stunted mess. Their fears weren’t entirely unfounded, and my isolation did facilitate certain quirks it took me a bit too long to eliminate, but my intelligence, contentment, and overall growth didn’t feel impeded by my apparently-tragic lack of friends. At least, that’s how I tend to view it.
Frequently labeled antisocial and stubborn, I noticed that my personal preferences were considered partially or wholly irrelevant. This is true for many children, I think, especially when they grow up surrounded by people who fear they’ll turn out wrong, somehow. I don’t know that any adult stopped to consider that maybe, just maybe, Meagan was at peace with not having many friends, and that she’d make them when she was ready. I’m not sure anyone recognized that introversion and antisocial behaviour are worlds apart.
As I grew older, I did begin to amass a very small, very selective group of friends. I didn’t always choose adults’ perceptions of ideal candidates—that is, I did not necessarily gravitate toward popular kids. In fact, I tended to avoid them, and they likewise avoided me unless they thought I’d give them the answers to the homework that had just been assigned. (My studiousness was attractive to just about everyone in my classes over the years, meaning everyone wanted to sit next to me inside but scattered at recess time.) The steady friends I did have were a bit like me: introverted, slightly eccentric, and entirely content with being both. Throughout my childhood, all the way up to middle school, the refrain continued: play with your friends. Be more social. Don’t just stand by that wall all the time. Go play with these girls and those guys and that group over there.
Sometimes, the concern, which I know to be benign and not entirely misguided, got a little out of hand. Fellow students were ordered to play with me (please never do this to any child), and didn’t always hide their resentment over it. Others would allow me into their group briefly, but were just as happy as I was to see me go. Probably, if I’d tried harder, been chattier, been more charming, I’d have made progress, but it all came down to the inescapable facts: they didn’t really want me around, and I was in no mood to waste energy trying to persuade them otherwise.
Don’t get me wrong: I nursed my moments of loneliness, especially as a teenager. Sometimes it seemed as though having more friends would be an express line to a better life, within the confines of school, anyway. When I became a bit more popular in middle school and my social group got larger, I welcomed opportunities to experience new people and activities. When I got to university and was totally alone again, I felt hollow and far more desolate than I’d ever felt as an excluded child.
On the whole, however, I don’t believe my personal growth was much improved by the constant commands to be more outgoing. The social butterfly wings don’t suit me, and they never really have. I applaud the efforts of those who cared for me; I know they were aware of the risks inherent in an isolated, sheltered child, and I see the effects of this isolation in other blind people. Some of them can’t shake a pronounced awkwardness, even as an adult, and I’m grateful to have navigated that particular minefield fairly successfully. I owe much of that to the efforts of the adults closest to me, who were just trying to make me into the best person I could be.
These things aside, I believe my intense introversion, so often judged and found wanting, shielded me from so much of the drama and misery that are youth’s trademark. Other kids were worrying endlessly about who was out and who was in, but I was busy reading yet another book. Other children at daycare were fighting over toys while I sat safely in a corner, knowing my giraffe-pony was mine, all mine. My ambivalence toward my peers wasn’t always an asset, and it definitely got me into trouble a time or two, but it also insulated me from a lot of pain and self-doubt I really didn’t need. Childhood and teenage years are difficult for anyone, but I had separate challenges that meant I would have had precious little time to waste on being lonely anyway. I was way too concerned with a mental illness I did not understand and a disability I didn’t always know how to deal with to cry my eyes out over whether the girls on the tarmac would let me skip rope with them.
Today, I’m still an unapologetic introvert, though with far more friends and a much richer social life. I’m no longer content with total exclusion, and I spend way too much time these days agonizing over things I would have thought silly and worthless as a child. I like my life, and I like who I’ve become.
Still, once in awhile I appeal to that three-year-old I once was. I ask her to lend me her shamelessness and her practicality. I ask her to remind me that I can be my own best friend when the need arises, and that what other people think, well, it doesn’t always have to matter.
Don’t worry, introverts. You’re okay.

Helping A Blind Person 101: Ask First, And No Means No

The world is filled with helpful people, and as a disabled person, I encounter many of them. There are plenty of apathetic people to whom I’m mostly invisible, but more often than not, I meet genuinely kind people who want to make my life easier.
The downside of this desire to be helpful is that not everyone knows how to go about it. All the good intentions in the world won’t make up for assistance that puts us in danger or hinders our progress. It may sound ungrateful to dictate how people should help us, but a guide to offering unsolicited assistance is past due. It’s all very well for us to rant about the inadequate and unwanted assistance we receive, but if we don’t advise people on the best way to aid us, we’ll never get anywhere.
Now, this is your regular reminder that I do not speak for all disabled people. I don’t even speak for all blind people. While I listen to the complaints, recommendations, and experiences of other blind people attentively, I don’t pretend to be an expert in all situations. The best I can do is cover the basics. So, here goes.

Ask First, always.

The issue I run into more than any other is people’s assumption that we live in a constant state of helplessness. They compensate for this by shouting instructions, touching us suddenly and without permission, or insisting that we must be lost, even when we reassure them that we’re doing just fine, thanks very much.
I can’t overstate this: asking before offering help is not optional unless—and you must be very sure of this first—we are putting ourselves at risk of serious injury. If we’re heading straight for oncoming traffic or poised to walk off a cliff, I’d say that’s a good time to step in. These exceptions are rare, however.
Asking for permission is the most essential part of being helpful, because you’ll find that most of the time we’re capable, competent travellers who know exactly where we are and where we’re going. Don’t panic if we veer a little while crossing the street, or backtrack when we walk past a landmark. Given time, we can usually straighten ourselves out. Deep concentration is at the root of problem-solving, so distracting us without being sure we are struggling is more of a hindrance than a help. Besides, asking before grabbing or steering someone is a tenet of common courtesy, don’t you think?

No means no.

Unless we are headed for the afore-mentioned life-threatening situations, it’s imperative that you listen to us and respect our wishes. If you offer help and we say we don’t need it, don’t be offended, and definitely don’t push. We’re not turning your offer down out of meanness or spite or ingratitude. We’re turning it down because we don’t need it, and help we don’t need slows us down and gets in our way, especially if you’re not skilled at giving directions or guiding a blind person. Chances are, if we’re saying “Thanks, but no thanks,” we mean it. Please respect that.
It’s worth noting that consent and personal space are concepts most nondisabled people cherish as much as their disabled peers. If you wouldn’t ignore consent when interacting with a nondisabled person, there is no justifiable reason to ignore consent when interacting with a disabled person.

Be open to guidance.

Despite your level of confidence, make sure you’re open to suggestions. If a blind person agrees to let you help them, tread softly until you know what they need from you. For example, if you grab a blind person’s hand, don’t be upset if they immediately break your grip and insist on holding your elbow instead. Holding the elbow of a sighted guide is safer than holding hands, and blind people have to be aware and protective of our personal safety. There are many ways to skin a cat, so to speak, but it’s up to us to tell you which way is best for our unique situations.
Note: just because you’ve used a particular method to guide a blind person in the past does not mean you are automatically entitled to use the same method again. We’re all different, and we have individual preferences and needs.

Be specific.

One memorable day, I was walking down the street with another blind friend. As we approached our destination, a stranger yelled from across the street: “More left! More left!”
We both slowed down, confused, wondering what on earth he meant. How did he know where we were going? What were we supposed to take from “more left?” How much was “more?” Were these vague instructions even safe to follow?
More than anything else, this stranger’s instructions distracted and befuddled us. If left to our own devices, we would have found our way without incident. We understood that he was trying to be nice, but his chosen directions were so ambiguous that they did more harm than good.
When verbally guiding a blind person, use specific language. (If you don’t know left from right, please don’t use them!) Mention landmarks, street names, and other universally-recognizable objects. Attempt to convey distance if possible beyond “a little more,” “over there,” “watch out!” and other nonspecific terms. Most importantly, don’t shout instructions across the street, since you might be wrong about our destination and are likely to throw us off course.

Use sound judgment.

Let’s say a blind person is making their way across a busy intersection. They’re about halfway across, and you think they might need help crossing the street. You roll down your window and call out to them. They startle, seem annoyed, and keep walking without responding to you.
Has this happened to you? If so, don’t’ take it personally.
Travelling while blind requires sustained attention—attention we can’t afford to split between keeping ourselves safe and deciphering sudden shouts from unexpected sources. Most of us use our ears to feel secure when we travel, so it’s best not to add to all the noise pollution we already have to tune out. Attending to more stimuli than necessary is not something we generally find helpful, so if we’re not actively seeking help, leaving us alone is key. More than once, I’ve been jolted out of my “travel zone” by someone offering unsolicited assistance at just the wrong moment. I understand that not everyone is able to judge whether the situation is appropriate, which is, of course, why I’m writing this guide!

Don’t let your feelings run wild.

A few mornings ago, I was striding confidently toward my office when someone shouted “No, Meagan!”
I jumped, badly startled, and said “What?”
“You’re headed for that door over there. That’s not your room.”
“Um…no, I wasn’t headed for the wrong door. I’m not even sure which door you’re referring to. I was headed through these double doors over here.”
“No, you weren’t.”
“I…definitely was…”
“Whatever, then!”
She stormed off in a huff, no doubt wounded. Rejecting her good deed of the day was enough to cause offence and even, it seemed, resentment. I had managed to anger someone simply by not needing their help.
This person made quite a few mistakes here:
• She shouted at very close range, frightening and distracting me.
• She used ambiguous language I couldn’t parse, as “over there” is not particularly descriptive.
• She assumed she knew my destination, even though there were many places I could have been going to besides my office. (Maybe I was looking for the washroom, or the staff room, or the exit, or any number of places.)
• She did not believe me when I explained that I didn’t need guidance.
• She took it personally when I continued to make my own way.
As is typical of me, I was far too polite to say any of this to her. I really have to work on that. I did not want to cause strife or make a scene, so I just walked away and let her think she was right. That was the worst thing I could have done, I know, though as she’s done this type of thing before, I doubt the message would have penetrated her obstinacy.
There’s something disconcerting about being told you’re wrong on the basis of no evidence at all. To my thinking, it takes an awful lot of confidence and nerve to assert that you know someone better than they know themselves. I’ve never seen a nondisabled person continually gaslighted, to the point where they wonder whether they really are going the wrong way. The attitude of “You’re blind, so I must know better” is disturbing, and I’d like to see it disappear, especially when we blind people internalize it for ourselves.

Let’s recap, shall we?

Try to remember that, while we appreciate help and occasionally need it, there’s a right and wrong way to give it. If we refuse your offer, don’t interpret it as a personal slight. If we explain the best way to help, respect our knowledge and expertise. If we become frustrated when our space is violated, don’t resent us.
Finally, if we tell you that your help was unwanted, don’t accuse us of ingratitude. Disabled people do need help, but only we get to decide what that looks like.

Guide Dogs For All? Maybe Not.

Ask just about any guide dog handler, and they will be happy to wax poetic about how much they love the experience. They’re willing to acknowledge that it’s hard work, and that it can be too frustrating for words, but it’s all worth it in the end, they’ll say. Their reactions are much the same as those of many parents: having children is stressful and life-changing, but it’s always, unquestionably worth it.
Since we only ever seem to hear from those who are living the guide dog dream (or those, like me, who choose to embrace the cane and nothing else), there’s a third group remaining mostly silent. This group includes two types of people. The first type consists of people who like guide dog travel in general but had a negative experience with a particular dog. The other type consists of those who drank the Kool-Aid, believed that having a guide dog is for absolutely everyone, and learned otherwise. While they may have adored their dogs and might not be opposed to trying again in future, they have come away feeling disillusioned, alienated and, in some cases, inadequate. Was it some failing of theirs that precipitated insurmountable issues? Could they have done more? Tried harder?
I want to tell the stories of just a few members of this underrepresented group. I want to extend their experiences beyond the scope of family and friends, so that they can be heard alongside the overwhelming joy from guide dog handlers everywhere. I don’t seek to take anything away from happy guide dog teams, but I do want to lift the voices of people whose stories have, I believe, been neglected for far too long.

Toeing the Party Line: Alicia’s Story

Alicia grew up with a cane in her hand, incorporating it seamlessly into her travel routine, and benefiting from comprehensive mobility training. Comfortable as she was with her cane, she thought as so many people do: true independence could only be found through a guide dog.
Believing that guide dogs were the only sensible option for independent blind people, Alicia never analyzed her decision to get a service dog. Her confidence was so deeply-ingrained that no other choice seemed viable, let alone wise. It was this belief, perhaps, that made her particular experience so devastating.
Once she completed high school, Alicia was matched with Dusty, a yellow lab with whom she bonded immediately.
Much as she enjoyed the smoothness and grace of dog travel, Alicia soon ran into trouble.

I started dealing with a struggle none of my other classmates seemed to be having. I found myself missing the tactile feedback that came with using my cane. I didn’t like the method of having to use my feet to search for the things I could have, in my opinion, found much more easily with my cane. When I brought this up to my trainers, they told me it was just part of the transition everyone went through.

Reassured, Alicia took Dusty home, and embarked on the stressful journey that is college. Predictably, the emotional and mental exhaustion brought on by so many simultaneous life changes affected her partnership with Dusty. She began leaving him at home here and there, relishing the freedom and confidence she felt only when holding a cane. She found caring for him burdensome, though she loved him dearly and refused to neglect him for any reason. She even began to miss the low-maintenance nature of cane travel.

I dearly missed being able to come back from a long day of classes and other activities, put my cane in the corner, and rest like I did in high school.

Finally, Alicia had to accept that she and her dog were both desperately unhappy. Though the decision broke her heart, she surrendered Dusty. She had no way of knowing what would happen to him, where he’d go, or to whom he’d be assigned, but she knew that she’d made the right decision, if not the easy one.

I don’t hear many stories like mine. In fact, I’m trying to remember if I ever have heard any other stories similar to mine. … A small percentage of the time, I wonder what was wrong with me as a blind person that it seems to work for everyone else, but didn’t work for me. However, most of the time, I realize that a dog is not the right choice for everyone, and I’m simply one of those.

Welcome to the Spotlight: Holly’s Story

Holly, unlike Alicia, did not consider a cane to be an extension of herself. Receiving regular mobility lessons as a child did introduce her to the art of cane travel, but not until her mid teens did she understand that she should probably start using one. Always comfortable and fearless in her own neighbourhood, Holly and her family saw no need for her to rely on a cane, and it was not until she grew too independent to tolerate constant sighted guide that she chose to use one full-time.
Struggling to find suitable mobility training with a cane, she resolved to apply for a guide dog, reasoning that she would then receive mobility training as a matter of course. It was the only way she could guarantee the independence she craved.
Thrilled by the power mobility training gave her, Holly went on to be matched with a dog. The training went well, but Holly soon discovered that no matter how much you enjoy travelling with a service dog, you’ll have to make some sacrifices.

I got my dog, and the first year was incredibly stressful. I’m not shy, but I am not especially sociable. I don’t like strangers, I don’t like talking to people in public unless it’s a planned event. I want to move through the world quietly the way most people can. And I had no idea that getting a guide dog would prevent me from doing that.

As Holly spent more time with her guide dog, she discovered that blending in was now impossible. She couldn’t go about her business unnoticed or unencumbered, because “the public won’t let you.” She was forever fielding questions that were centred only on her dog, as though she was just a “vessel” attached to her dog’s harness. When she wasn’t answering questions, she was telling people off for feeding, touching, and distracting her dog. The strain took a serious toll on Holly.

It was terrible. I cried most days. I hated being so visible, and yet utterly invisible all at once. I hated that I’d undergone this huge personal transformation and yet nobody saw me as a person.

Distraught, Holly considered giving up her dog, though conversations with her father, who was a dog handler for the army, persuaded her to be patient. Wait a year, he suggested, and if she was still unhappy at the end of it, she could return her dog.
Holly has chosen to persevere, but she acknowledges that it’s hard to “come out” as someone who doesn’t love being a guide dog handler.

We have this awful culture within the blind community where we can’t be honest if owning a guide dog actually feels a bit shit. It has to be sunshine and rainbows or you’re a failure.

When the Dog is the Problem: John’s Story

Not all guide dogs are perfectly suited for the job. Every dog has flaws—they’re not robots—but some have quirks and tendencies that make you wonder why the school allowed the dog to graduate.
John was an unfortunate victim of this circumstance. He was pleased by his dog’s guidework, but it was overshadowed by an unfortunate vice: “My dog is a poop-eater.”
In contrast to Holly’s and Alicia’s stories, John wasn’t new to guide dogs. He worked with his first guide for over eight years, and had no reservations about getting a second one. He was matched, and began training soon afterword.
When John was told that the dog liked to eat poop, he was a bit concerned, but didn’t waste excessive energy being anxious about it. He was certain that, with patience and persistence, the issue could be resolved. What is more, the trainer agreed to help with the process.

The instructor agreed to monitor the dog while he was in training. … For the most part, the dog behaved himself for the week and a half that I was with the instructor. Over time, I learned that not only would the dog eat poop, but he would also eat nuts, pinecones, grass, and everything else that was inedible.

The situation only worsened. John’s dog progressed to eating his own waste, which was quite a problem in enclosed spaces like John’s apartment, where the shag carpeting suffered most (no other carpeting was available, and cleaning it was a nightmare). Still, John remained admirably optimistic.

After eating poop, he would often vomit on my apartment carpet several hours later. At first, I found the whole thing disgusting, but felt upbeat and determined to solve the problem.

Calling the school was not as helpful as he’d hoped. He was told that disciplining the dog was nearly impossible, because John would have to catch the dog in the act—a tall order if you can’t see what your dog is doing. To add to the fun, he was also informed that there was virtually no disciplinary measure he could take, as shock collars and other items would not be effective, either. He was left with only one option: a mouth guard. Unfortunately, that didn’t go so well.

I purchased [a mouth guard]at a Store and used it, but two things happened. First, the dog just lay on the ground and did not move when he had it on during playtime. Second, when he did see another dog doing its business, he ran over and shoved the mouth guard in the waste meaning that I had to clean up his face and the guard. At this point, I began feeling both helpless and frustrated. Why was I given a dog with such a severe problem?

As awful as he felt for himself, John also sympathized with his dog. Would the dog have to be constantly restricted when playing or roaming grassy areas? How healthy would his confinement be for him? Another desperate call to the school only led to advice like “Oh, just play with him inside only.” However, the dog lost interest in this quickly, leaving John with few options.
Eventually, John gave up his dog.

I felt sad after he left, because he was truly a good worker and great companion. But I also knew it was the right thing for the dog and myself. After the initial wave of sadness past, I felt relief. I was glad the whole ordeal was over. I also felt a mix of frustration with the school and sorrow that a $30,000 dog only got a year and a couple months of use as a worker. I even felt the need to apologize to the instructor when he came to get the dog. I know how hard his puppy raisers and the team at the school worked to raise him, and I felt bad that all that work would be for nought.

While John may not be disillusioned with the guide dog experience in general, having been successful with it in the past, he has certainly been the victim of the guilt and humiliation inherent in giving up a guide.


While crowd-sourcing stories for this blog post, I was asked, rather confrontationally, what the purpose of the post might be. I suppose this person thought I was running a smear campaign against guide dogs—I don’t know, I didn’t ask. What I do know is that writing this post was an exercise in empathy and compassion, not bitterness or spite. I’m not publishing this post to put force behind my own refusal to get a guide dog. This is not a case of me saying, “See? See? It isn’t always perfect, you know!”
My aim is to expose people to both sides of this complicated choice. For many, guide dog travel is a dream come true. It’s more liberating than they could ever have imagined, and they would never go back to any other mode of travel.
For others, the situation is more complex and far less satisfying.
Here is what I ask: if you have read this post all the way through, and have identified with the stories herein, exercise caution when encouraging people to get guide dogs. Ask relevant questions to ensure the person you’re speaking to is in the right place—geographically and emotionally—for such an enormous responsibility. Make sure that your encouragement is based on thoughtful consideration, not societal expectation or the warm glow given off by your own positive experiences.
I ask, most importantly, that you be gentle with those for whom guide dog travel isn’t the best choice. Be compassionate. Do not assume that, if it doesn’t work out for them, it must be their fault. Don’t quiz them for hours on end about what they might have done to improve the situation unless you have compelling evidence that there was neglect or abuse involved. (Advice is helpful; judgment is not.) Place pressure on schools to provide necessary after-care and supports when things go awry.
Here’s the gist: you do you, and let them do them, and all manner of things will be well.

Breaking The Social Media Chain: Stop Pasting, Start Caring

“One like = one prayer!”
“Scroll down and type amen!”
“I know many people don’t give a hoot about…”
“I know 97% of people won’t post this, but my real friends will!”

I think it’s safe to say most of us have seen these copy-and-paste chain statuses. They’re shared by well-meaning people who have fallen for the slacktivism trend—that is, they’ve been tricked into believing a boilerplate Facebook status will inspire positive change. This isn’t to say that the people sharing them don’t care deeply enough, or that they don’t play a significant role in their offline lives, but it’s worth unpacking the reasoning behind these posts to ascertain their usefulness.
Awareness is a great buzzword, and it makes people feel as though they’re accomplishing something just by hitting “post.” While social media can be a powerful tool, this isn’t the best way to use it.
First of all, these statuses employ a confrontational, aggressive tone. Claiming that most people “don’t give a hoot” about serious illnesses and disabilities is unlikely to win people over. Whenever I see this, it irritates me and makes me want to scroll right by. These posts often go on to say that only “real” or “true” friends will repost, as though anyone who doesn’t is an unfeeling, poor excuse for a friend. Each time I see this type of statement, my instinct is to declare that my true, real friends would refrain from posting these at all. If the many snarky parodies all over my news feed are any indication, I’m not the only one who feels this way.
Sharing these posts comes across as inauthentic. It only takes a line or two for me to realize my friend did not, in fact, write it for themselves. It doesn’t sound like them, and doesn’t even seem to fit their personality. Since it doesn’t align with who I know them to be, I’m less willing to spend time reading it. I try to fill my Facebook feed with people who interest me, and while it’s wise and sometimes even necessary to share the words of others, copying and pasting a generic rant about real problems and “true” friends seems out of place and careless. I’m happy to get behind a cause that my friends care deeply about, but in my opinion at least, these posts don’t convey sincerity.
These statuses devalue the power of thoughtful, specific posts intended to raise legitimate awareness. A personalized message from one of my friends is much more likely to influence me than a template some stranger developed—especially when it’s clear the original poster had little grasp of how best to persuade people to listen and act. Sure, the unusual combination of aggression and warm fuzz garners plenty of attention and millions of shares, but does it really result in anything lasting or meaningful? I’m doubtful. (If anyone has any actual data on this, I’d be genuinely interested!)
Last, and perhaps most importantly, these chain messages don’t demonstrate anything other than a person’s ability to copy and paste. It takes almost no effort to do this, and even less thought. It’s so easy to hit a couple of buttons and feel as though you’ve made a real difference in the world, especially when you’re rewarded with likes and shares. In the end, though, all you’re doing is helping a chain letter spread to as many corners of the internet as possible. Maybe sharing does raise genuine awareness and maybe it doesn’t, but it’s not enough to change your status—you need to prove you care, too.
If you want to do some tangible good, reach further than a Facebook post. Seek out friends who are suffering and let them know you’re thinking of them. Instead of “liking” a status in lieu of a prayer, why not go ahead and say an actual prayer? (I don’t know that this does any good, but it’s still preferable to hitting a “like” button and calling it a day.) Donate to charities you believe in; sending money to a trusted organization is a lot more useful than addressing popular causes in vague terms on Facebook. If you don’t have the money to donate, use your social media reach to promote those charities instead, so that others can support them. Speaking from my own experiences, I benefit far more from a phone call, text, or thoughtful blog post than a wordy, spammy Facebook status. I do write a blog, and I do use my modest online presence to raise awareness, but I also do my best to strengthen, encourage, and bolster people as individuals.
My words shouldn’t be interpreted as an attempt to disparage social media or awareness campaigns. I began this blog in an effort to reach as many people as possible, and social media is the chief way in which to do that. I write to inform the public, so likes and shares do make a difference. Sometimes, engaging with your friends, family, and wider network is your only option, especially if you lack money and political clout—and I definitely lack both.
So, it’s not a sin to post these things, though be warned that many of your Facebook friends will find them very annoying. It’s okay to use your social media profile to spread awareness of causes you care about. I urge you to broadcast the voices of those who are experiencing illness and disability. We appreciate when allies signal-boost us, because it might be the only way to be heard.
As you do this, be conscious of the limited good social media can achieve. Never fool yourself into thinking that social media is the best or only way to make an impact. The world needs more than good intentions and viral content. We need comfort, friendship, solidarity and concrete assistance. We need people to write to political representatives; donate to organizations that help us; remind us that we’re not alone; and ask open-ended questions about what we need on an individual basis. Improving our lives is best accomplished by employing us, dismantling societal barriers, and offering us your shoulder when we need it most.
So, share away, by all means. Your social media platform is yours to use as you will; I’d never dispute that. I simply request that you consider the impact of what you post before you post it, and ask yourself whether you could be doing something else—something more productive.
Scroll less, pray more.
Paste less, write more.
Share less, give more.
Most of all, be there for the people who need you. Your little area of the world is where you can do your best work.

The Cult Of Positivity: 9 Inspirational Mantras I’m Very Sick Of Hearing

Everywhere I go, the magic of positivity is being touted. It seems that people think it can solve everything. Just smile, recite your affirmations, and will your problems away.
A positive outlook is helpful, and even necessary, but realism is equally helpful. While I know there are good intentions behind this movement, it’s not always what we need.

The only disability is a bad attitude.

Certainly a negative attitude is disabling, but no matter how glowingly positive you can be, it won’t influence employer attitudes, cure chronic illness, force the world to become accessible, or eliminate prejudice in a single bound.

Work hard and you’ll succeed.

C’mon, we all know this is patently untrue, right? Hard work is almost always required, but there are other things to consider, like luck, privilege, the nature of your disability, and the size of your network. In my experience, people who believe this are those who have either gotten lucky or have never known what it is to have the deck stacked against them.

All you need are positive mantras.

For some types of people, mantras don’t work and can even make things worse. Affirmations are great and all, but they’re not instant solutions. This isn’t The Secret: you can’t attract good fortune and happiness just by scrunching up your nose and wishing really, really hard. (Try it. I’ll wait.)

If you believe in yourself, others will, too.

Really? Reeeeeeally? You definitely have to have confidence and faith in your abilities, of course. That’s a given. We know we’re capable. We know we deserve an equal chance to prove ourselves. We know society doesn’t often give us the opportunity to show that we’re contributing members of society with as much to bring to the table as nondisabled people. This platitude is so absurd that I can’t even say much about it besides, um, … reeeeeally?!

If you want something enough, it will happen.

This is a very damaging thing to say, even if it’s meant to encourage people to keep the faith and commit to their aspirations. I can get behind that. If you don’t try, you won’t ever succeed. I just can’t ignore the fact that it’s almost entirely false, though, not to mention that it makes a ton of assumptions. Remember that old saying: you can want in one hand and spit in the other, and see which fills up first? Yeah, that.

If you’re polite and kind, you’ll influence people.

When I started the blog, I set out to be kind. I still maintain that kindness and empathy are underrated and they serve me well for the most part. The thing is, this line of reasoning makes it sound as though, with a smile and a gracious response, nondisabled people will immediately understand and change their perceptions and behaviours. It’s really rather astonishing that people expect this to actually work across the board. Few marginalized groups ever got anywhere by being nice all the time. Besides, I wasn’t put on this earth to educate people whenever they demand it. I enjoy it very much, but it’s not my purpose.

If you were more positive, it might cure you.

This is so offensive and short-sighted that I don’t even know what to say about it. People are always proposing outlandish cures for chronic pain or mental illness (and they love the idea that prayer will fix my broken eyes), and it makes my blood boil. It places the burden on us, as though the only thing keeping us from banishing our disabilities is our lack of faith.

If other disabled people can do it, you can, too.

This one drives me insane. It’s inspiring to watch fellow disabled people achieve great things, and it can spur others to try pushing the envelope, but everyone is different. You can’t assume all disabled people are the same. No one would say to a nondisabled person, “I know someone who can do ___, why can’t you?” We acknowledge that people in general have different strengths and diverse circumstances, so why doesn’t this apply to disabled people? (Personally, I found this statement demoralizing, and it made me feel terrible about myself for a long, long time.)

If you’re in a bad situation, just fix it.

This is a statement that is often put forward by people with disabilities, who assume that every other disabled person has the same advantages they do. It’s an awfully privileged thing to say, and it’s not very helpful besides. Believing that someone should just “figure it out” is often the result of a “pull yourself up by your bootstraps” mentality that simply won’t work for everyone. If you’re too poor to move to a more accessible city, unable to learn skills due to a lack of available instruction, or unable to afford an education, that shouldn’t reflect badly on you the way many disabled people seem to think it does. This is not an excuse to give up entirely and expect your life to improve. Yes, it’s important to explore your options and be creative—the world won’t hand things to you—but saying that someone can always “fix” their lives is condescending as all get-out, and discouraging as well.
Positivity has its place, and we shouldn’t forget that. Unfortunately, it’s currently in fashion, and it doesn’t look like it will be calming down any time soon. All you can do is ignore what’s useless, take what is useful, and find your own balance.