misconceptions and Myths

Breaking The Social Media Chain: Stop Pasting, Start Caring

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“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

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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…

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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

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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.

Chicken Soup For The Nondisabled Soul (And Why You Won’t Find It Here)

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Along with being asked why I’m so angry and negative, I’m also advised, by disabled and nondisabled alike, to be more positive. Sure, I’m allowed to write about exploitation and discrimination, but why am I not serving up more feel-good, inspirational content? Where’s the comfort food? Where’s the acknowledgement that the world is, at its core, full of decent people who just don’t understand me? Where?!

I know what so many people want: they want chicken soup. They want brief, digestible, guilt-assuaging content that reminds them that life is essentially good, no matter what. People certainly enjoy rage-fuel, and my passionate posts receive far more attention than my sweet little gratitude pieces, but there is still, it seems, a demand for what we in the disabled community lovingly call “inspiration porn.” You know the stuff—content that portrays disabled people in a light most pleasing to the nondisabled eye.

In these pieces, we are courageous, steely individuals with more guts and gumption than anyone else would ever need (and the drive to use them). These pieces highlight inspiring people who have achieved ambitious heights, shattering expectations with an appealingly musical crash. They are high-powered athletes, successful entrepreneurs, survivors of devastating illness and injury, or astonishingly talented superstars. They have “overcome.” They have “transcended.” They have “made it.” Life as an everyday (boring, tragic) disabled person is a battle, and these unicorns have “won.”

The rest of us? Well, nobody really wants to hear about us unless we’ve been thrown out of a restaurant for having a service dog, or been paid less than minimum wage by Goodwill. The stories the public seems most attached to are the ones where a disabled person is either beating the odds in the face of adversity, or standing proud and unflappable after shameful treatment.

These reassuring bowls of chicken soup are not just favourites of those with no disabilities. They’re also beloved by many in the disabled community, who are convinced that the only right way to be disabled is to reach newsworthy goals. There’s only one acceptable narrative, and if we don’t fit neatly into it, we’re doing life wrong. We’re “surrendering.”

The only way to get the world to care about how we are mistreated is to uplift them. Make them admire us, and after that, maybe they’ll come around to respecting us as well. You know, eventually.

I like a good story as much as the next person. I’m proud of my disabled peers, who work hard and weather fierce storms along the way. I admire and respect their strength, knowing they wouldn’t have to be so strong in a different, more accessible world. I laugh and cry with them, exulting when they succeed and commiserating when they fail. I celebrate with them when they win big, and hold space for their anger when society fails to recognize who they are outside the default disability narrative of struggle. I share empowering stories when they do particularly well, so that others will know they are more capable than many might imagine. Inspiration is not, in itself, toxic, and positivity in moderation is indeed excellent nourishment for anyone’s soul, disabled or otherwise. The blog has been, I hope,  a vehicle for empathy and understanding as often as advocacy and education.

We need to be vigilant, though, because it’s so tempting to conform to the expectation that demands we remain brave and heroic at all times. Living our lives does not necessarily require heroism, and we deal with disability because there’s no alternative, not because we’re superhumanly strong. The public doesn’t know that all the way down, though, not yet. If we don’t pay attention to how we are portrayed by popular media (and judged by each other), we will inadvertently place strain on ordinary disabled people simply trying to live their lives.

Not every disabled person is brave at all times. Not every disabled person will soar to new, hitherto unexpected places. Many of us will stumble, and fail, and give up, at least temporarily. Many of us will live quietly and contentedly, just like the majority of nondisabled people. We need to remember that it’s okay to stumble. It’s okay to falter. It’s okay to break away from the inspirational mantras circling in your head long enough to remember that you are not obligated to feature in the Huffington Post. Your life is meaningful because it is yours, and is not made less meaningful if you never break a glass ceiling or awe the masses. Plenty of people go through their whole lives without doing anything of note (I expect that will be my own lot, and I’m okay with that) and they’re still perfectly happy. You deserve an accessible, welcoming environment whether you’re “making a difference” or going quietly about your business. Our deeds do not render us eligible or ineligible for decent treatment. Having a disability or illness does not have to shape your personality or desires. Being brave and strong should not determine whether you deserve the struggles you’re up against.

Reach for the stars, if that is what you believe you should do. Don’t succumb to the doubts and misgivings of others. I’m the last person to limit you. While you’re aspiring, just keep in mind that you don’t have to function as living chicken soup. If you want to be ordinary, if you feel too exhausted to be strong at all times, or if you fail spectacularly, know that it’s an acceptable circumstance and, while you can always get back on the horse, you don’t need to be inspiring while you do it.

If you need to cry, to rage, to crumple, please do. Gather your support system close and let them carry you for a moment. You’re allowed.
In short, you do you.

Looking for chicken soup? Sorry, I’m fresh out.

Fearing The Pigeon-Hole: Or, The Trials Of Being A Disabled Writer

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During a mock interview, the interviewer skimmed through some writing samples, noticing how many of them were directly related to disability. He then asked, without a trace of irony, whether I was “all about accessibility?” I didn’t have a coherent answer for him.
After mentioning blindness in a piece of creative writing, my classmates pressed for details, appearing to overlook the fact that the story wasn’t about being blind at all. I was writing about love, familial obligation, and social isolation, but all people seemed interested in, at least at the time, was the blindness angle.
Writing a blog about disability advocacy is hard, honest work, but many people believe it is the obvious choice for a blind writer. It is generally assumed that disabled people only ever write books, articles, and blogs about their disabilities, and all too often, this is proven true. Most of the blind writers I know focus, if not exclusively, then predominantly on their disability and how it colours the world around them. They may engage in all types of social advocacy, but disability tends to be at the forefront. They may have a varied work history, but much of it might involve working for advocacy organizations. We are, in short, pigeon-holed.
As I embarked on my modest little writing career, I began to fear the pigeon-hole. I wrote stories and articles that were completely devoid of disability-related themes, just so I could avoid being put into a neat little box. I explored every other facet of myself—Meagan as woman, Meagan as student, Meagan as writer and so on—but tried to write around blindness so I would seem more nuanced and less typical. I fought hard when classmates and instructors would press for more information on my disability, especially when I deemed it to be peripheral to the writing in question. I resisted when people suggested that my writing would only be unique if I included my disability, as though the rest of me was incurably boring without it. I became frustrated when I was told to “write like you do for your blog,” thinking this meant I was only of interest when writing about my broken eyes.
What I failed to understand, though, was that my disability-related writing was appealing simply because it was direct, confident, and convincing. I wrote with an authority I struggle to maintain when writing about other subjects less well-known to me. My straightforward and relatable approach on the blog was what made others want to see more of that style, not the blindness itself. People didn’t want more of my blindness, per se; they wanted more of me, period.
Nervous that I would inadvertently paint myself into a corner I would never emerge from again, I considered dropping my blog altogether, to weaken the associations between my writing and my blindness. Would having a blindness blog peg me as a one-trick pony right off the hop?
I asked myself what I’d write about instead. Contrary to the beliefs of many, I have wide-ranging interests, and could probably write several blogs if I had the time and energy. My bibliophile mind would have no difficulty conjuring endless posts about my reading life. Certainly my adventures with mental illness would provide ample fodder for a blog all on their own. I could easily write about music, popular culture, technology, and even philosophy, without breaking too much of a sweat. If I thought enough of my writing to believe people would actually enjoy them, I could cover a lot more ground.
It took some time, but I’ve come to realize that writing “Where’s your dog” does not have to pen me in as a writer unless I let it. Focusing on disability in one medium does not restrict me in others. Writers are, in theory, limited only by their time, energy, and ingenuity. I can submit to as many publications as I’d like. I can establish as many blogs as I please (though I think one is enough, for now anyway). I can explore the multi-faceted world I inhabit just as fully whether I have a blindness-related blog or not. And, if I fear that employers and the casual reader will dismiss me as that one-trick pony, why, all I can do is prove them wrong.
Further, if I do choose to write about my disability in relation to the wider world, that’s not shameful or lazy. If the everyday woman can write about being female, and the everyday lover can write about being in love, then surely I, the everyday blind person, can write about being blind without sacrificing self-respect. Surely disability, like any other minority trait, is enough to give me an interesting perspective on the world? After all, I greatly enjoy the perspectives of fellow disabled people. So, why shouldn’t my own writing about my blindness be truly meaningful?
Society is so often putting us in boxes, telling us our place, and shaping our narratives. In this case, though, the only one stuffing me into the pigeon-hole was me.

The Unconscious Cultivation Of Defensiveness

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Disabled people have often been (unjustly) accused of being perpetually offended. We seem to be screaming about some atrocity or other with regularity: words like “discrimination,” “bigotry,” and “injustice” flow freely from our lips. Most of the time, able people’s unwillingness to understand our anger drives me mad. If they spent even a single day in our shoes, they might change their tune. No matter how often we explain why our passion is warranted, there will always be some able people who refuse to listen. But … (I do love buts, don’t I?)

I’m becoming more aware of our unconscious, unintentional cultivation of defensiveness. We mistake simple kindness for condescension, barriers for willful discrimination, and ignorance for deliberate refusal to change. Often, our suspicions are proven accurate—indeed, we are so often proven right that it’s understandable that we’d jump to conclusions. I can’t help but worry, however, that we are jumping the gun.

This issue was brought to my attention when I read a blind person’s rant about a flight attendant who did not want to charge him for a drink. His assumption was that the free drink was offered out of pity, as though the only reason to be kind to us is to express a desire to improve our tragic lives. To my surprise, this assumption did not remain unchallenged. The vast majority of those who responded cautioned him against narrow-mindedness, even advising him to simply accept the gesture and move on. While I can identify with his instinctive defensiveness, and acknowledge that I’m guilty of the same, I think we should all examine our biases very carefully. The free Slurpee I was provided with at a convenience store may have been given out of a genuine wish to make a girl’s day, but the reaction, even from family, demonstrated that disabled people and those close to them always suspect random acts of kindness to be a direct result of blindness. When I announced that I’d been given a free drink, I got the following response.
“Maybe it’s because he was feeling generous tonight.”
“Nah,” said someone else, “it’s because you’re blind, I’m sure.”
Able people’s tendency to attach unnecessary meaning to disability can be shocking. I was insulted when a student, after discovering that a professor often praised my work, remarked that his favour was based solely on blindness. (It may have had something to do with her own poor performance in the class, but I’ll never know for sure).

The thing is, similar acts of kindness are directed at perfectly able people, and they do no more than I have to earn them. If you stand in a crowded pub long enough, some stranger will buy you a drink as often as not. If the Slurpee machines are about to be cleaned and refilled anyway, you’ll probably get a free one. If someone sees you from across a restaurant and is feeling magnanimous, they might send a free dessert over to your table. These actions are not, and should not be, linked with pity or condescension. Sometimes, humans just feel like being nice.

If you receive a free drink, try to take it with grace if you can. If someone pays for your coffee, interpret it as an attempt to make your Monday morning better until you see evidence to the contrary. If you are not chosen for a job, don’t immediately blame blindness—it’s possible you simply were not the most qualified candidate.

Don’t get me wrong: I realize that, in the majority of cases, blaming blindness is justified. I and other disabled people have been through too much, and faced too much blatant mistreatment, to be crucified for viewing disability as the culprit in most cases. That said, it’s worth stepping back and asking ourselves whether we’ve become too accustomed to defensiveness. We may not mean harm, but perhaps we’d be better served by approaching life with a bit more thought and a little less passion.

Disability: The Gift That Keeps On Giving?

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I was intrigued when I found out that Pope Francis planned to address disability. Historically, religious institutions have treated disabled people as angelic gifts from God, meant to represent innocence; living examples created to inspire love and compassion; or burdensome, cursed individuals who must be either healed immediately or cast out. Whichever viewpoint I analyze, it’s clear to me that none of these depictions of disability is accurate, and they are all potentially dangerous.

The “Cool Pope” disappointed me, however, when he placed himself firmly in the “gifts from God” camp. There goes progress, I thought. I’m not part of any religious institution anymore, but that has not limited my exposure to this ideology. Plenty of nonreligious people believe our disabilities are gifts—to the world, if not to us—which are meant to inspire goodness in other humans, and to foster special strength when fighting adversity. The idea, it seems, is that while disability is undoubtedly difficult and certainly not ideal, we’re given it for some mystical, predetermined reason, and our purpose in life is to function as a blessing to the world through our unique perspectives and commendable fortitude. People appear to subscribe to this belief whether they believe in a specific God, a nebulous higher power, or nothing at all.

You might think this is a refreshing change from the disability-is-universally-terrible myth, but it’s not much of a respite when you examine it closely enough. Once again, the ideology of disability perpetuated by able-bodied people dehumanizes us, placing us on either a higher or lower plain, depending on your perspective. Some would say higher, because we’re blessed with special powers of endurance, and what’s not flattering about being considered a “gift” to all the world? Some, like me, would consider the plain lower, because I find the viewpoint disturbingly backward. Disability is not written in the stars; or, at the very least, it is not usually inexplicable. People are disabled because of injury, disease, genetic disorders and so on, not because their destiny is to function as a living advertisement for the virtues of compassion. Believing that my disability was given to me for some mysterious purpose I am called to fulfill is a very heavy load to bear. My disability is neither a gift nor a curse; it just is. What I do with it is mine to decide.

I know it’s comforting to think of my blindness as something positive, and it does have its upsides (though I’d argue that I’d face plenty of hard times without it and could learn most of the same skills if I were sighted). This comfort is false and cold, though, especially since I’m not bettering the lives of others by default. Each time my blindness gets in my way—prevents me from finding employment, subjects me to discrimination, hinders me in all the ways it does—I don’t glow with purpose or rest in the knowledge that suffering is part of my destiny. What I do is get on with it.

As I’ve said many, many times now, I don’t spend my life feeling miserable or bitter. Genetics do what they do. That doesn’t give me or anyone else license to pretend that disability isn’t negative, though. I don’t subscribe to the concept of disability being some kind of transcendent experience or perk. It’s something I work around–largely because of the world’s attitudes and not because of my broken eyes themselves–but it’s not something I’m proud of.

So, next time you want to placate a disabled person—or the loved ones of disabled people—by insisting that disability is a divine gift, stop and think about what that might mean. Getting rid of this misconception is just one more way I can be thought of as fully human: flawed, but equal.

It’s All Relative

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As I’ve covered over and over, people treat blindness like a life sentence, complete with misery and woe. It’s not an easy life, there’s no doubt, but it’s not a sea of bitter suffering, either. The misconception that my life really is that burdensome, though, tends to dissuade people from sharing their own suffering with me, as though my disability renders their own struggles meaningless by comparison. Even those who are close to me, and know full well that my life is mostly happy, need occasional reminders that they are free to share their problems with me, no matter how minor they might seem next to mine. Just the other day, my sister was about to tell me about something that was troubling her, when she stopped mid-sentence: “I feel so guilty! My life’s so easy. You have it so much harder. What am I doing complaining?” I took that opportunity to reiterate that everyone’s situation is different, and that pain is relative.

We all have unique issues to deal with, and what might be an insufferable load to carry for one person is but a light affliction for others. A problematic work situation might bother me less than someone else because I’m so grateful just to have a job in the first place. Chronic pain, however, is a thorn in my side, while others handle it with grace and pluck.

I, like so many others, had to learn the hard way that those with the hardest lives are the most willing to listen to my own difficulties. They give the best advice, and often provide welcoming ears and broad shoulders. Since I am so well acquainted with trials and tribulations, the last thing I’d do is devalue someone else’s. I’d look with shame and scorn on someone who tried to use blindness—or any disability, really—as a way to dismiss and silence another’s feelings. No amount of personal pain should make light of another’s. It’s worth knowing our limits, and being candid when we cannot be there for someone else right at that moment, but we must keep life in perspective. We are here to support one another, after all, and insisting that my blindness, mental illness, and chronic pain somehow invalidate the complaints of others is not only ludicrous—it’s dangerous and supremely selfish.

So, if you ever find yourself shying away from unburdening yourself on my shoulder, remember that it’s all relative, and that my pain has nothing whatever to do with yours. All it ought to do is create deeper understanding between us, and it demands that I show the same compassion as others have shown to me. Unburden away!

Accessibility: What It Is And What It Isn’t

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I’d be hard pressed to overstate the importance of accessible technology. The world leans so heavily on it that excluding any group from its use borders on injustice and is, at best, an unwise move. Accessibility makes good business sense. It widens audiences. It generates glowing publicity. It raises awareness. In short, it’s a win-win for basically everyone.

Unfortunately, it appears that some people with disabilities, and blind people in particular—the population I know best—have lost perspective. Accessibility is, at its core, a goal that demands that products be designed with as many people in mind as possible. Ideally, a blind person playing with, say, a new feature of Facebook should be capable of accessing it. Put another way, accessibility simply means that every button is labeled, every graphic is described, at least in simple terms, every link is clickable, and every menu is navigable via means other than the mouse. This does not even begin to scratch the surface of accessibility for all populations, but it’s a fairly comprehensive list of the things blind people hope for and expect from technology. The cost of inaccessible software alone can be devastating. It’s a real slog to mess with vital services that are inaccessible, like government websites and debit machines.

All this being said, accessibility is not inherently synonymous with ease of use. Obviously it is in everyone’s best interest that products be easy to use; user-friendly products make good sense, after all, in a world so driven by productivity. However, an app or website does not need to be a dream to use in order to be accessible. An app might be a little difficult to figure out at first, because it has an unfamiliar interface or a button whose function is not immediately and glaringly obvious. Maybe the documentation is low-quality and support lacking.

Even so, this does not mean the app or website is universally impossible to access. There are many programs I use often that other blind people consider partially or totally inaccessible, not because they are, but because it takes a little fiddling to get them to work. Unfamiliar interfaces are not inaccessible by default. User-unfriendly apps are not inaccessible by default. The world certainly owes all disabled populations a reasonably accessible environment, but it does not owe them a perfect, effortless experience. We fight so many legitimate battles over accessibility, so we cannot waste energy screaming over features that are merely tricky or troublesome, not inaccessible outright. I don’t believe that we ought to shut up and be grateful, but it is worth taking a few steps back, and remembering what accessibility is (and what it isn’t).