“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 phase 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 or presumptuous 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 rants of other blind people quite 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 really 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 walking straight into oncoming traffic or poised to walk off a cliff, I’d say that’s a good time to step in. These exceptions are very rare, however.
Asking for permission is the most essential part of being truly 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 door we’re searching for. 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 simply 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, if you bypass our wishes and grab or touch us without our consent, you’re treading on dangerous ground. It’s never acceptable to violate someone’s personal space, especially when they’ve made it clear that doing so is unwelcome. Here I must return to the rudimentary rules of politeness: no means no.

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, and you grab their 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 another 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 along with another blind friend. As we headed for the mall, a stranger yelled from across the street: “More left! More left!”
We both looked around, confused, and wondered 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 made our way to the mall 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, please don’t use them!) Try to 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 decide 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.
Navigating around traffic and other demanding tasks require close attention—attention we can’t afford to split between keeping ourselves safe and conversing with someone else. 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 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 headed for 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 very suddenly, frightening and distracting me.
• She used general language I couldn’t make sense of, as “over there” is not particularly descriptive.
• She assumed she knew where I was going, 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 did not need guidance.
• She took it very 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 absolutely 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 an able 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.

Let’s recap, shall we?


So, 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. We’ve no right to be excessively rude about it, but we do have the right to say no. Disabled people do need help, but only we get to decide what that looks like.

Guide Dogs For All? Maybe Not.

Ask any guide dog user, and just about all of them will be happy to wax poetic about how much they love having a guide dog. 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.
So, because 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 very 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. They learned the hard way, and while they may have adored their dogs and may not be completely closed to trying again in future, they have come away feeling disillusioned, alienated and, in some cases, inadequate. Was it some failing of theirs that led to the collapse of their dream? Could they have done more? Been better? Tried harder?
I want to tell the stories of just a few members of this badly-misunderstood 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 users everywhere. I don’t seek to take anything away from happy guide dog users, but I do want to lift the voices of people whose stories have, I believe, been neglected for far too long.
Three brave souls have come forward to speak candidly about how it felt to take the leap, fall short, and realize they made a mistake. Regret may not plague them, but they definitely have a very different outlook from those who have found universal success and contentment living with a guide dog. My hope is that other people with disabilities will read this and be encouraged. Having a service dog may be for many people, but it’s not for everyone, and that’s okay.
Note: These are not horror stories. They are tales of real people who underwent real suffering. Please respect that.

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. It was so deeply-engrained that no other choice seemed viable, let alone wise. It was this belief, perhaps, that made her particular experience so devastating.
So, once she completed high school, she 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, however, the emotional and mental exhaustion brought on by so many 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, and even 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 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. This life 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

Of course, 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 the dog had 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 so 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 his apartment, where his 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, though. 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 really 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 very quickly, leaving John with very 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 freeing than they could ever have imagined, and they would never go back to any other mode of travel.
For others, though, 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, and ensure that 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.

When It Happens To You…

It happened on a bus. I was sitting near my boyfriend, who is not fully sighted but whose vision loss is not noticeable to the average passers-by. An older woman began talking to him, and my mind drifted a little. I was jolted back to earth, though, when I heard her say, quite sweetly, that it was “so nice of [him]to take care of [me].”
There it was.
I knew it would happen sometime, I really did. I’d heard so many stories from other blind people who had sighted partners. I’ve commiserated with them, thinking I knew how it felt because people had made abstract statements of that kind to me. I’ve basically heard it all: you need a husband so he can take care of you; you can’t raise kids or manage daily life without a man; you need to choose a sighted partner so he can keep you safe–and on and on.
It turns out that I was wrong about one crucial element: an abstract statement, no matter how offensive, is far less upsetting than a well-meant but deeply personal one–and it wasn’t even directed at me!
I tried to break it down. After all, I knew this was coming. My previous partner had been totally blind, so we never encountered this situation, but as soon as I began dating my current boyfriend, I expected it. So if I knew it would happen, and had helped so many others bounce back after it happened to them, why couldn’t I anticipate exactly how much it would hurt?
In the end, besides the fact that I am an independent person who takes care of people as often as they care for me, the tone and style of her words were my undoing. This woman thought she was being kind. She simply wanted to commend this nice young man for what she considered exceptional strength of character. Her intentions were pure and I’m certain she did not understand that it might be the wrong thing to say–let alone harmful to the girl in question. I know all this, and yet…
I think it comes down to feeling like an object. The conversation did not include me, strictly speaking. I was not being spoken to, but about. This woman’s casual praise concerned me at least as much as it concerned him, but I don’t believe I was really meant to participate at all except to agree emphatically and gaze at him adoringly for the next few minutes. I was merely the tangible, living example of my partner’s essential goodness and compassion.
Now, he really is a wonderful human being, and sometimes having a blind girlfriend does involve offering a little extra assistance. We travel using sighted guide, for example. Other than a few relatively minor adjustments, we function as any other couple would. My blindness isn’t usually on my mind, and I doubt it’s on his either.
I know this–know it down to my bones–but I still feel insecure, hurt, and embarrassed when someone assumes otherwise. I found this particular incident so unsettling that it took me a few minutes to calm down fully, and I regret to say that I did not respond to her comment with as much grace as I should have. True, I tempered my “I take care of me–he really doesn’t…” with a smile, but I don’t know how effective my attempts to cover my shock and indignation really were.
So, okay, it was a difficult experience. It was humbling, because I thought I could handle such a thing with minimal effort. I believed I was near-impervious to this sort of thing, only because so many fellow disabled people had dealt with it first. What’s the big deal?
Ultimately, this is my takeaway: you cannot know how something will feel until you go through it. Guide dog handlers might be sure of their reaction when they experience their first access refusal, hoping their conviction that it’s wrong will carry them past anger or humiliation. Disabled people who are denied a job based on discrimination can’t know just how painful and frustrating it will be before it actually happens. A student cannot predict their emotional response to being barred from a course because they are deemed unemployable and unteachable until the moment it occurs. I know this, because I’ve been through the last two examples and witnessed numerous people go through the first. My experiences mesh with theirs: it’s easy to empathize; it’s much harder to deal with these situations when they’re directed at you, and only you.
So what can I do? What can we all do?
First off, we can avoid assuming we have such a firm handle on our emotions. We can choose not to claim we know how we will feel until we find out the hard way. We can definitely prepare for the eventuality, and do our best to steel ourselves against what we know we’ll face at some point. Even as we do this, we must be mindful that all that preparation might fly out the window when we need it most.
The more important step is to support other disabled people even more wholeheartedly than we have before. It is not enough to stand by and comfort them. We must avoid minimizing their feelings or pretending we can know what they’re struggling with if we genuinely do not. It may seem like we understand a situation intimately, but there’s just no replacement for first-hand experience.
Going forward, I’ll apply the lessons I learned from this encounter, while continuing to embrace the compassionate view I’ve tried to nurture all along. At the end of the day, I know I must not forget that this sweet woman’s only goal was to praise what she considered to be a small pocket of good in an increasingly dark landscape. She actually went on to say that we made a good couple. She wasn’t trying to hurt anyone, and while I know her viewpoint is wrong and even unhealthy, I can’t change it, not for now. All I can do is move on, let it go, and practice resilience. I hope that, next time it happens, I’ll be ready.

A Conversation With Keri: How fibromyalgia Changed Her Perspective On Blindness

During my first year of university, I was afflicted with brutal and frequent migraines. Since I already suffered from chronic tension pain, this new development was a devastating blow. I began to experience stroke-like symptoms; I missed classes and struggled to meet deadlines; I shuddered to think what might be wrong; and I refused to reach out.
While I have been able to detect the source of the migraines and manage them well now, I’ve never forgotten how cripplingly disabled I became while under their power. Blindness had always made life challenging, but I’d never been so completely incapassitated by broken eyes. Invisible disability, which so many people fail to understand, taught me a great deal about myself and others. I learned never to underestimate pain, or assume I knew every battle a person might be facing.
Keri suffers from chronic pain–pain that can be far more disabling than any form of blindness, and she’s graciously agreed to share her story with us.


Q: Can you tell us a bit about your life before chronic pain began to affect you?
A: It was nearing the end of September back in 2014, and my life was pretty typical. I was in my second semester of college, I had a great boyfriend, and life was good. I was happier than I had been in a long time, even though I had lost my sister just two months before. I was hopeful about my college studies, and ready for Christmas break like any other typical college student.

Q: When did you first realize something was terribly wrong?
A: It was a Wednesday night, and I was relaxing on my loveseat, and gaming after a typical day of classes. I was happy to be free for a little while from boring things like Experimental Psychology, and to be doing something I love: gaming. Suddenly the calves of both of my legs started hurting. I have a high pain tolerance, but I was almost in tears. I stood up to get a few alieve, thinking it was just some kind of bone pain or some such, but it was no bone pain I had ever had. As soon as I stood, the pain got twice as bad, and if it wasn’t for the loveseat right there, I’m sure I would have ended up on the floor. It was disabling, and the worse pain I had ever experienced. I only made it through that night quite honestly by the grace of God, and my boyfriend staying on the phone with me for a good while, even though I had woken him up. I made it to school the next day, but barely. I could hardly walk, and I felt as if my legs were being torn apart.

Q: What exactly is fibromyalgia?
A: The most common question I get is what is fibromyalgia? The best way to define it in my opinion comes from Mayo Clinic, and they define it as the following.
“Fibromyalgia is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. Researchers believe that fibromyalgia amplifies painful sensations by affecting the way your brain processes pain signals.”
There is much research that still needs to be done, and many in the medical community or society in general think it is fake, or something they just tell you when you can’t figure it out. This is the most frustrating part.

Q: Do you feel that your condition affects how you see blindness compared to how you viewed it before?
A: I always felt that blindness was a pain in the ass, and I took the fact for granted that it wasn’t as big of a deal. When the pain started, it really sank into me how blindness isn’t as disabling as it seems. Sure I handled it well, and accepted my blindness, and it has its very frustrating parts. It is a piece of cake compared to pain.

Q: Most of us are already acutely aware of how hard it is to find work when blindness is present. Do you know to what extent your pain will limit your employment opportunities?
A: When people first meet me, or if they don’t know me well they always say things like you are so amazing, or I don’t know how you do it. If and when they find out that I suffer in pain constantly I think that perception may shift.

Q: Does being called inspirational bother you, especially when these terms are applied by people who have never dealt with what you experience every day?
A: Yes it does. I don’t feel that I’m inspiring at all. I have been dealt an unfortunate hand in life, but I make the best of it. I’m just a woman doing what it takes to survive, and make it through. I do the things I want or need to do.

Q: Do you have any advice for others going through chronic pain?
A: My best advice is to have a great support network, because you need it. You need those who can deal with the ups and downs. Find good doctors who listen to you, and who can help you find a pain management plan. Try anything you are comfortable trying, because each case is different. If you are in school be honest with your professors, or if at work, your boss. Sometimes these people can also be a great support network, and help with accommodations. The best advice is take me time, because if you don’t you can never re-centre yourself, and sometimes that really helps with the pain, especially if you are stressed.

Q: Finally, if you could say one thing to nondisabled people who don’t understand you, what would it be?
A: Have respect. You never truly know someone’s problems until you have been in their shoes. Try your best to not pretend like you know what they’ve been through when you haven’t. Be as flexible and accommodating as best you can. We are just normal people, with differences, and we should be treated like human beings.