Author: Meagan H. Houle

Goodbye, Colourful World

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I usually identify as blind because it is easier than trying to explain what I can and can’t see, but the label isn’t entirely accurate. Technically, I do have a little vision, though not enough to recognize faces or read print of any size. LCA is slowly depleting the tiny amount of vision I was blessed with at birth, and I’m finally beginning to care.

As a child, one of my favourite activities was visiting the greenhouse on a warm June day, basking in the profusion of mellow blues, insistent reds and cheery yellows all around me. Many colours were beyond my visual scope even then, but as a child the brightest colours were still easy to see, and I relished them. I appreciated them most where I found them in nature: I discovered them in flowers, in crushed autumn leaves, and even in fruit bowls. I became confused when trying to see the soft green of an apple, but had no difficulty appreciating garish carrots and sunny lemons. While I didn’t exactly understand beauty, I did understand the vibrancy and immediacy of colour, and I remained fascinated for many years.

As my vision is slowly eaten away, however, my cones (colour-sensitive cells of the eye) are deteriorating. My peripheral vision is all I ever really had to begin with, and as that disappears, my ability to distinguish colours is fading with it. Where once I could easily separate bright yellow tank tops from pale pink ones from white ones, I now struggle. If I tilt my head just so, and squint my eyes just so, and say the magic incantation just so, I can sometimes tell. Other times, however, no amount of adjustments of lighting or head position will quite do the trick, and I’m left just a little unsure. My world is turning, ever so gradually, into one of shades. I no longer notice bright colours unless they’re called to my attention. I could be gazing straight at a bright red apple, but it looks black until I concentrate. Only then does the red hue show itself. Mostly, I’m okay with that. … Mostly.

Occasionally, I allow a little sadness to steal over me. It’s not just colour I’m losing, either. Just this evening, I was looking down at my parents’ black dog. He was sprawled on the carpet, enjoying a luxurious nap, and I realized I could no longer see the entire length of his body without moving my head. My field of vision is now so narrow that I cannot even see an entire hand’s breadth without difficulty. It’s a small thing really—being able to see the length of a dog’s body is not exactly a life-saving perk. Even so, after so many years of knowing things would change but not really dealing with that knowledge, I’m suddenly forced to face it head on.

On the bright side, the loss is proceeding at a snail’s pace. It takes several years for me to detect a significant decline, so I feel quite peaceful about the whole process. My brain is learning to accept the loss little by little, and I’m learning right along with it. Since my vision was never of much practical use anyway, I’m not nearly as distressed as one might expect me to be. Certainly I’m not fantasizing about a cure or composing laments every other day.

But sometimes…I miss the flowers. I miss the ability to sort laundry without any effort at all. I miss the gentle gold of the sunrise and the fiery orange of the sunset over the trees. I don’t know if I’d call these things beautiful, exactly—it’s not beauty I was seeing—but I would call them, well, intriguing. Bit by bit, my world is becoming less vibrant.

Sure, I still have sound, and scent, and touch, and taste, and all the rest of it. No, I’m not awash in grief over the whole thing. I’ve always known it would turn out this way, and I’m thankful that I was ever able to see those flowers and those apples and those sunsets—or my version of “seeing” them, I suppose. It’s important to remember that I really had very little beyond colour to appreciate visually. Even at birth, I had but a tiny fraction of what sighted people have. But, yes, I will miss the colours.

It’s lonely, sometimes. I have a lot of totally blind friends, and they simply can’t empathize. Paradoxically, my sighted friends are even less able to do so, because they find the idea so horrifying. How could I possibly feel mild nostalgia rather than all-consuming heartbreak? I feel as though I’m not quite a real member of the blind-person club, all because I know what red looks like. I do belong, functionally speaking: I can’t read street signs or take photographs or even recognize my mother’s face. Despite the fact that my life ticks most of the “blind” boxes, I feel just a little isolated, as I sit on my living room couch and look down sadly at that dog.

It will be all right, of course. In general, I shall carry on as cheerfully as always. In general, I will not feel the need for sight or the longing for a cure. In general, I’ll continue to be a typical blind person. Every now and again, though, I’ll take a moment to bid a quick farewell to the colourful world.

The Cost Of Disability: Or, Why We Can’t Have Nice Things

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Being disabled is expensive. Slap a label like “adaptive” or “assistive” on a product and the price skyrockets, just like that. It seems odd, doesn’t it? Exploitative? Yet, that’s what happens.

The free market was supposed to help us all. The invisible hand of competition was supposed to keep prices reasonable. We were supposed to have choice. Unfortunately, capitalism can’t accommodate markets that are too small to inspire competition, nor can it liberate us from monopolies that keep prices extortionately high. I don’t begrudge these companies the right to value the bottom line. People need to eat, after all. There’s such a thing as going too far, though. With basic Braille technology costing several thousands and wheelchairs so expensive you’d need a full-scale fundraiser to afford them, the landscape for low-income disabled people is grim unless they have access to substantial funding.
Considering that we have to use screen readers, wheelchairs and other assistive devices every day, it’s not practical to expect us to simply go without. We’re not a manipulative community whining about handouts. We really do need these products, especially in professional and educational contexts.

Living as a disabled person can incur significant costs when adaptable housing is needed. Installing adjustable beds and stair lifts can become staggeringly expensive, and for those living in low-income housing, proper accessibility is by no means guaranteed. It’s bad enough to be chronically unemployed and live in low-income housing; but living in a place where you lose much of your independence adds considerable insult to injury. Don’t even get me started on the markups on prescription drugs. Even life-saving drugs routinely sell at a 400% markup (100% is generally what is considered reasonable). It no longer surprises me when I see the lengths to which companies will go to monopolize a market and shamelessly exploit people who are already disadvantaged. We’re not asking for a pity party, to be sure, but a little reason would not go amiss.

We’re not the only ones affected, either. There are numerous grants available from governments and charities, which are intended to ease our financial burden. For example, the Government of Alberta provides $8000 a year which is spent on assistive technology and disability-related costs while I’m at university. You would think that’s overgenerous—I certainly did—but even during years when I did not buy any assistive technology at all, the entire grant was put towards paying for the editing of inaccessible textbooks. What is more, the grant did not even meet the full cost; my university covered the rest. It makes my head spin a bit, it really does. Governments are well and truly stuck, because manufacturers of accessible products have few incentives to lower their prices. Why mess with a business model that is working so well? There is more competition than there used to be, it is true, but for the most part, prices remain astronomical.

Worse still, these companies have managed to convince charities and governments that their most expensive products are the best, in any situation. Even though there are other viable options out there, many school divisions and universities insist that JAWS, one of the priciest screen readers, is the only wise choice. Encouraging this view is advantageous, so companies are happy to charge what they do, knowing that someone will gather the necessary funding.

The little things bother me, too. Take watches, for example: very few stylish accessible watches exist. Most are either obnoxious talking watches that draw a lot of unwanted attention (and make startling bonging sounds when you’re not expecting it), or braille watches (which aren’t braille at all, but tactile). These watches are generally affordable enough, but they are seldom fashionable. This may seem like a frivolous gripe, given the more serious struggles we face, but why can’t we have nice things? Why do we have to wear tacky accessories just because we’re disabled? I’m not a huge fan of braille accessories, but a lot of blind people are. Why can’t they have more legitimate selection? I mean, have a look at these charming braille hoodies: they say things like “peace”, “joy”, “Jesus”, and my personal favourite, “Can you read this?” The site boasts that you can “spark conversations with total strangers!” Uh, no thanks. If I really want to spark conversations with strangers, I’ll get a dog.

Simply having a disability is financially and socially punitive, and there are many who are happy to capitalize on the issue for personal gain. Certainly, this willingness to exploit customers is not unique to assistive technology companies. However, the problem is compounded when we’re forced to purchase necessary products, much as we wish we could do without them. It’s encouraging to see how many grassroots attempts to provide affordable adaptive products and services are emerging now. I am immensely proud of open-source screen readers and inexpensive mobile apps. We’ve come a long way. Nevertheless, I don’t think it’s wise to ignore the nasty elephant in the room: being disabled is prohibitively expensive, and few people know it.

“Why Are You So Angry?”

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Almost every person who so much as encourages advocacy will face this question at some point, and while I don’t get it often (my writing style isn’t what you’d call vitriolic), I have been asked this multiple times. “Sure, you deal with a lot,” they say, “but do you really need to be so pissed off about it? Do you really need to write a whole blog whose purpose is to complain, and point out all that’s wrong with the world?” My answer to this is always the same: “Huh?”

I’m not an angry person. I like my life, even when it’s difficult, and I have great faith in the idea that human beings are capable of kindness and enlightenment. I spend most of my time just being Meagan, and the rest is usually spent trying to educate, not lay blame or spew hatred at the world at large. Yes, I do go on about what’s wrong with society. Yes, I do sometimes vent my frustration on a public forum. Yes, I get angry sometimes.

Do I spend my life in a state of perpetual fury? Do I direct hostility toward the sighted population? Do I focus more on being a malcontent than on trying to make the world that little bit better? Nope. I’d much rather bring positivity into this world than anything else, even as I’m being direct and unyielding concerning my rights as a human being.

 

I must confess that I’m shocked at the public’s expectation that we should be virtuous angels, patiently awaiting the day when the world will give a damn about the injustice that is built into society’s very structure. I am amazed that people are surprised when we object to systemic discrimination and harmful stereotyping. I mean, would they shoulder these things with unwavering grace? I don’t think so. That said, do we have the right to reject all efforts to reach out to us? I think not.

 

I did not create my blog with the intention of using it as a source of fatalistic ranting. I set out to maintain a safe space where ideas could be shared, questions could be answered, and advice could be dispensed. I’ve always kept one goal in mind: how can I foster empathy and understanding? How can I describe what my life is like, and how can I use that insight to help others?

I’d like to believe that regular readers realize I’m prone to seeing the good in the world. I hope they have noticed my tendency to right wrongs and offer solutions rather than condemn specific individuals and the mistakes they make. I hope, most of all, that I make my readers feel inspired, not hopeless, and determined, not angry. I resent those disabled people whose sole purpose appears to be making “normal” people miserable. I don’t expect them to maintain a sweet disposition when they’ve been fielding the same ignorant questions and withstanding the same discrimination for years on end. It’s acceptable to indulge anger; it can be a powerful tool if it’s used correctly.

That, of course, is the key: one must use anger judiciously. There’s enough rage-fuel online without worsening the problem. It wastes time and energy we could be devoting to initiatives that improve our lives. Accessibility and inclusiveness benefit us all, whether we’re disabled or not. We can all share in the fruits of disabled people’s labour. We can all read and write blogs like this one. If we get a bit angry sometimes? Well, I’d say that’s human, wouldn’t you?

So You Like To Pet Service Dogs…

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As I watch you encourage your child to engage with a working dog, even after the handler has asked you to stop, I cannot help but feel angry: angry that you, a stranger, feel that your child’s right to interact with a cute puppy dog is more immediately important than the handler’s wishes. I am angry that you would argue with a firm denial, even when it is given with respect and gentleness. I am angry that you are showing blatant disrespect for the safety and comfort of the dog’s handler. I am angry that you are teaching your child to disregard the proper treatment of service dogs. I am angry that you, as the parent, are refusing to live by example. I am angry that you are ensuring that service dog handlers everywhere will have to keep saying “please don’t pet the dog” indefinitely.

I understand: the dog is beautiful, and friendly, and a pure delight to touch. Your child adores dogs—probably, the dog adores children, too, and would welcome a little affection. You are a dog lover, and hate to deprive yourself or your child of the opportunity to indulge in a bit of doggie-interaction. You don’t want to disappoint your child. I’m a dog lover, too. I understand. But …

I’m here to tell you that it doesn’t matter, because you may choose an unsafe time to distract a working dog, thus inconveniencing or even endangering the handler. It doesn’t matter, because the dog has a million distractions to contend with already—dropped apple cores, other dogs, and tantalizing bits of popcorn—without sudden attention from a strange human. It doesn’t matter, because you should never touch someone else’s property without permission—and yes, the dog does count as property in this instance. It doesn’t matter, because you were told no. That, on its own, ought to be good enough.

Many of my friends are dog handlers, so I can guarantee that they don’t enjoy telling an eager child that they can’t touch the puppy. They don’t enjoy saying “no” three times a day. They don’t enjoy denying you the company of their dogs. They just want to get where they’re going without fuss, and the last thing they feel like doing is disciplining a complete stranger. They are not part of a conspiracy to ruin your fun. So …

Why do you do it? Why do you insist, even when you know better, upon continuing to violate another person’s space? Why do you continue to place handlers in awkward positions where they must discipline your child because you refuse to do so? Why do you care more about touching that sleek coat than you do about whether the handler makes it across the street safely? Why do you care more about your right to go to pieces over the cute doggie than another human’s right to autonomy? The dog is an extension of them, and when you touch the dog, you’re effectively intruding on their personal space as well.

If I placed a wandering hand into your stroller to give your child’s head a stroke, wouldn’t you be a bit nervous? If I reached over and grabbed your arm to say hello, wouldn’t you be annoyed? If I insisted on distracting you while you were trying to do an important job requiring vast concentration, wouldn’t you wonder where my manners were? So I will ask it of you: where are your manners?

Yes, we’re talking about a dog here, but that doesn’t exempt you from the rules of basic human courtesy. Maybe the dog would love to be stroked just now. Maybe the dog has had a long day and would love to flop down and have its belly rubbed. Ultimately, though, the dog has a role, whether that’s guiding a blind person, or alerting the handler of an approaching seizure, or assisting a police officer. That role precludes them from being an ordinary dog while they’re out and about. When that harness is on, the dog is not a cute little puppy you run up to—it is another living being, hard at work and deserving of your respect. Even more importantly, the dog is attached to someone who is depending on them, and that person is also deserving of your respect.

To those who pet the service dogs: no excuse is good enough. Please, for the sake of safety and common decency, stop.

What Do We Want? (Accessible Pin Pads!)

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I love using my credit card for just about everything. I’m loath to spend my emergency cash on, say, that Starbucks coffee or carton of milk. Cash may be quicker—and for Canadians at least, perfectly accessible—but I’d rather save it for times when debit machines break down. I hate to ask a cab driver to stop at an ATM, for example.

There is a trend toward pin pads that are partially or totally operated via a touch screen, and it’s not an accessible one. Despite the fact that technology exists to make touch screens usable for blind people (just bring headphones), I have yet to encounter a machine that I can operate independently. If I’m lucky, the number pad itself is tactile. I’ve not been lucky.

Normally, I don’t make a huge deal of partially or wholly inaccessible products unless they seriously impact my and other’s lives (even though accessibility makes sense). This definitely counts as a product that does. What do you suppose happens when I face an inaccessible pin pad? That’s right: I have to reveal my pin. Usually, I’m with a sighted friend whom I trust implicitly, but since I do run errands on my own, as most blind people often do, I’ve had to give my pin to complete strangers. Yes, the likelihood of my pin being stolen is small, but it’s still possible and, with the theft of pins and replication of cards becoming more prevalent, it’s a real risk.

I feel that, for something as basic and necessary as payment methods, we have the right to total accessibility. I’m not aware of the advantages of touch screens, though I imagine they must exist or people wouldn’t be manufacturing them, but I’m not sure if they justify putting a chunk of the population at risk. Blind people aren’t statistically common, but we are definitely out there, and we deserve to keep our credit and debit cards secure, just like everyone else.

Since the technology exists to make these machines accessible, I see no reason at all for continued failure to implement it. I suppose this might involve a financial burden, especially if the machines are replaced rather than modified, but even if they are produced more accessibly in the future, that would reduce and eventually eliminate security risks for blind people. Once that’s done, we will face the same safety risks as everyone else. Machines will still be compromised, but at least we’re not being expected to give our pins away to people who could exploit them.

 

As fellow blogger Blindbeader points out, these touch-screen pin pads don’t just inconvenience blind people. They pose accessibility challenges for other populations as well: “I know several people who have good vision, but who have challenges using touch screen due to other concerns with their hands and fingers. To say nothing of the installation of such pin pads so high up that they cannot be lowered to those using wheelchairs.”

 

I understand that these things don’t always occur to manufacturers at first, but if we play our cards right, they’ll know, and then they’ll have no excuse.

So what do we want? (Accessible pin pads!)
When do we want ‘em? (Um…at a time that is sensible and financially feasible?)

Chill Out, People: I Am Not Contagious

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I take the bus, and there are several empty seats around me, conveniently placed right up front. Someone embarks via the front door, and walks quickly past me to take a seat waaaay at the back. I sit down for a lecture, noticing that most students are clumped together, while others have gone out of their way to give me a wide berth. I flop down in a seat in a study lounge, only to have the person next to me gather their belongings and sidle over to a seat across the room. Anyone seeing a pattern here? Anyone? Anyone?

I’m not even sure if people are conscious of this, but I am beginning to think they’re convinced that blindness is contagious. Unless you have an eye infection and enjoy swapping mascara with strangers,, you’re probably not a threat to anyone else’s eyes, but I’m often treated like a leper. Some people undoubtedly move away because society puts a premium on personal space. Others, however, do so because I make them uncomfortable, which I understand is a common experience for many disabled people. Mothers drag their children away from the oncoming blind lady, while students shift restlessly when I sit down near them. It’s common enough for people to leave space between each other; Canadians aren’t really used to tight quarters unless they live in Vancouver or Toronto. Even so, people’s attitude toward me seems a bit too blatantly fearful to be blamed on a desire to avoid human contact.

There are a litany of reasons to avoid sitting near someone: I wouldn’t blame you a bit for avoiding the person sniffling noisily in the corner. Nobody likes icky cold germs, but unless I have ominous substances pouring from my red nose, there is no logical reason to steer clear.

I usually just shake my head and move on—what else can I do? I’d be lying if I claimed it didn’t hurt a little, though. I’m a nice person who is reasonably friendly. At the least, I’d never encroach upon another person’s space, and I might even provide good conversation if they only gave me a try. Students are especially prone to engaging strangers on campus, but they tend to ignore me unless they think I need help. I want to say to them, “I cannot give you blindness, okay? Mine is a genetic condition, so unless you’re my secret half-brother, please relax. You’re fine.”

Social exclusion and general discomfort are the order of the day for a lot of visibly disabled people, and all one can do is bridge the gaps as best one can. Sometimes, though, my snarky side prevails, and I feel the urge to shout, “Come sit near the freak, why don’t you? I don’t bite (hard)!”

So, friends all, take a seat by me. It’s okay. You’ll leave as healthy and sighted as ever–I guarantee it.

Dear Sighted Friend…

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I’m going to get a bit more personal this week, but my hope is that you will all find a bit of universality in this post, and share it with anyone to whom it might apply.

A few weeks ago, I lost a very dear friend unexpectedly, and her passing brought the value of her friendship into even sharper focus. She was one of those sighted friends who took everything in stride, made mistakes and learned from them, and viewed me as her friend who is blind, not her blind friend. I want to write about her today. I hope you see some of your friends in her. If you do, take a moment to thank them for their friendship. We don’t say these things enough; I know that now.

Thank you for taking the blindness thing in stride so quickly. It took you a little time, but you saw me, not my broken eyes. You supported me while I learned this adulting thing, and hardly considered it “helping”, even when it was. I worried about that dynamic far more than you ever did.
Remember when I would text you with all those blindy emergencies? You made living in a new city, a new neighbourhood, a new building, seem not only bearable, but fun.

Thank you for being unflinchingly honest with me, always. You confessed, early on, that you took me to lunch that first time because you thought I seemed lonely, and felt a bit sorry for me. Once you realized that blind people aren’t hopeless by default, you relaxed into being my friend, not my personal Mother Teresa.
Remember all those times you were blunt about being unsure how to treat me? You were so open and so kind about it, even when it hurt a little at the time.

Thank you for learning from your mistakes, and helping me learn from mine. You had some false impressions about blindness, and you were eager to clear them up. You didn’t know how to guide properly, but you soon learned. You sometimes said things that cut deep, but when I pointed out why, you focused on healing the harm rather than justifying yourself. Most importantly, you helped me grow by clearing up misconceptions of my own.
Remember when you almost walked us both into traffic, then burst into hysterical laughter because the guiding thing was distracting? You were so glad I wasn’t upset by it. Everybody messes up sometimes; you rarely did.

Thank you for your outstanding sense of humour. You were always cracking jokes, once you knew I was okay with them, and you let me laugh at myself in total comfort and solidarity. You approached everything with a willingness to laugh at hardship, and move on.
Remember when you proclaimed yourself to be my “guide dog?” We named you Scout. You always bugged me about getting a dog of my own (only so you could have “snuggles on demand”) but this was as far as I got. Your “guide dog” gallop was legendary.

Finally, thank you for being so much more than my sighted friend. Thank you for considering me as much like everybody else as any disabled person can be. Thank you for treating me, with a very few exceptions, like Meagan, not like blind Meagan. Thank you for blossoming into everything a sighted friend ought to be.
Remember when I wrote that blog post about friendship, and you took the time to remind me, for the umpteenth time, that I was so much more than your blind friend? I do. I always will.

I hope every disabled person can have someone like you around to make them laugh; to prevent them from taking themselves too seriously; to remind them that they are normal in all the ways that matter; and to help them grow.

I love you, Scout. Rest easy.

In a Zombie Apocolypse…

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I was bonding with my parents yesterday evening, watching The Walking Dead, as one does. It got me thinking (as every little thing seems to do): in a zombie apocalypse, who would survive? Not me!

Besides the fact that I tend to freeze in life-or-death situations, I’m disabled. In the majority of cases, I’d be a liability, and there’s no point sugar-coating it. It’s not that blind people can’t defend ourselves. We can take self-defence classes like anyone else, and many of us are very adept at looking after ourselves. In a fight to the death, though, I wouldn’t put money on most of us, and certainly not on myself. Those walkers would reduce me to a mass of steaming entrails faster than you can say “On your left!”

So, why does this matter? Well, it highlights a simple fact of life: in many situations involving physical altercations of any sort, there is no replacing the human eye. While I have great reflexes (I can stop on a dime as soon as I hear a noise that frightens me), these would not help me much in a situation requiring a lot of unpredictable movement. The walkers aren’t going to stop growling menacingly long enough to tell me they’re coming at me, and very little other than Lady Luck would swoop in to save the day.

Lots of girls are used to being coddled unnecessarily, and this type of coddling is ubiquitous when you have a disability on top of your presumed feminine weakness. (I can’t speak for men, but I’m sure they face similar presumptions.) In a stressful situation, people’s first instinct is to bundle me into a safe corner and tell me to stay put while they deal with the scary, difficult, dicey stuff. No need to burden me. And, as is my custom, I try to understand where they are coming from. They are trying to do the right thing, and the worst of it is that they are sometimes correct that I can’t help out.

I joked about being a liability in a wizard duel, but that has darker implications, ones which I’ve never really been able to ignore. A few years ago, my house was broken into. Two men, intent upon stealing and nothing else, thank goodness, thought my house was empty and barged inside, trashing the house and, to my consternation, tracking mud all over the carpets (how dare they?!). I was in my bedroom on the second floor, cowering in fear and totally incapacitated by panic. Instead of doing the sensible thing and making my presence known, I trembled, and cursed, and hyperventilated, and pictured all the ways I might be brutally disposed of by these terrible monsters. (Fellas, if you’re reading this, thanks for not killing me, but next time, take off your damn shoes, okay?)

It turned out all right. One of the men opened my door, saw me, and just about lost his mind. They fled so quickly that I didn’t even have time to cross the hall and grab the phone before they sped away. I guess I’m scarier than I thought.

I did realize, on an intellectual level, that most fifteen-year-olds, weighing all of 120 pounds, would have been pretty helpless against these men even if they’d had a weapon. Even so, part of me was convinced that if I’d been sighted, I could have done more, or at least stood more of a chance. Maybe I could have identified them, or caught sight of something I could use as an improvised weapon—who knows? No one ever dared blame me for it or even comment on my particular inability to defend myself, but they really didn’t have to: I was all too aware. There are plenty of blind people who could have held their own; I’m not one of them.

It’s pretty depressing, really, knowing that in plenty of cases, I can’t be of much help to myself or others. If there ever was some kind of global crisis, God forbid, I would be classified as a liability and lumped in with the elderly and ill. I would be that lone straggler in the herd of caribou, just waiting to be snapped up by a pack of opportunistic wolves. Sure, I could fight, and sure, I could flee, and sure, I’d have normal human instincts, but I still don’t like my chances.

So, okay, an apocalypse is very unlikely. Life-threatening situations, however, are not. People find themselves in them every day, and there’s a decent chance I might be in one again. How would I handle it? Would I be defenseless? Would I be rendered even more powerless by my disability? If I was with others, would I be useless, or worse than useless? Would I be in the way? Would I cost someone their lives because they were trying to defend me along with themselves? Deep questions, folks, deep questions. So far, I don’t like the answers.

I’ve had enough of zombies for now. Excuse me while I go watch something involving fairy princesses.

On The Outside Looking In: Why Facebook Is A Terrible Friend

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I remember a glorious time, back in, say, 2009, when Facebook was a legitimate way to keep up with people I cared about. Most of the content was generated by real-life experiences my friends and family were enjoying (or enduring as the case may be) so I was able to participate quite easily. And then…

After a couple of years of relative contentment, a new trend emerged: personal, original content was largely replaced by external content (usually photos). Every time I scroll through my news feed, I encounter shared posts about well-loved photography, inaccessible articles, and random pictures of, I dunno, cats. Sheepish as it makes me, I must admit that I feel more and more isolated. I can no longer participate as fully as before. I can no longer keep in touch in any meaningful way.

I’ve discussed how to make posts more accessible on Facebook, and reassured sighted users that they don’t have to describe every single photo, whether personal or shared from an external source, in expansive detail. It’s way too much bother for limited reward. I can’t pretend it doesn’t make me feel like I’m being excluded, though. Instead of hearing about the antics of my friends’ cats, I miss out entirely because photos tell a better story. Instead of enjoying a new recipe a friend posted, I get to scroll right by because the text is inaccessible. Instead of laughing along with my friends’ favourite image-based jokes, I get to hope that the accompanying comments will give me enough context to go on. Most of the time, they don’t, and while I occasionally ask for explanations if I’m really intrigued, I hate to do it. Ain’t nobody got time for that.

I thought perhaps my feelings were exaggerated. How much of my feed was genuinely hidden from me? I wanted to find out, so I performed an informal experiment. I scrolled through the last hundred posts in my news feed (yes, it took ages), “hiding” all the posts that featured only photos shared from external sources. Eighty-six percent of the posts were eliminated. It was even worse than I’d thought. While I can comfort myself with how clean and clutter-free my news feed is, that comfort is awfully cold.

I’m probably not missing much in the grand scheme, I know. Considering all the other consequences of inaccessibility, this is really small potatoes. Even so, a lot of my friends and family spend so much time appreciating other people’s image-based posts (some spend hours on Facebook per day) while I spend five minutes, tops, because there’s nothing to see. (Yes, it does wonders for my productivity, but still!)

I’ll get over it, I really will. Most days I don’t even think about it; but I admit to moments of weakness when I let it bug me. Social media can make people very lonely, and this is a special type of loneliness that won’t ever go away, not really. Facebook is implementing groundbreaking image recognition technology to help blind people figure out what’s in an image, but there’s no telling how accurate or useful it will be.

Like I said, most days it’s no biggie. Just for now, though, I’ll have a bit of a wallow. Indulge me.

Satire: 17 Easy Ways To Make A Blind Person’s Day

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1. When introducing yourself, use loud, exaggerated speech. Since we’re blind, it’s safe to assume we’re a little dim, too.
2. Don’t speak directly to us. It’s always best to talk over our heads like we’re not there at all, especially if you are offering a service. Example: “What would she like to order?” Be sure to ignore our attempts to answer for ourselves.
3. Grab or otherwise manipulate our bodies whenever and wherever you deem necessary. For example, if you intuitively perceive that we’re going the wrong way (even if you haven’t asked where that is) just snatch the nearest limb and lead on, Macduff!
4. If you aren’t in a position to grab us, you can always shout instructions in the hope that we’ll know what you’re talking about. If we look baffled, just keep repeating the instructions in an increasingly frantic tone. We’ll clue in eventually.
5. Remind us often how grateful we should be that people are willing to provide accommodations for us. While it’s unlikely that we will ever, ever forget this for more than five minutes at a time, it’s a good idea to slam the thought home when we’re not expecting it. It builds character.
6. Stage loud conversations about us while we’re in the room, because we won’t hear. If we hear, it’s okay, because we won’t understand. If we understand, it’s okay, because we won’t care.
7. Keep all conversation firmly focused on blindness. If we try to interject by discussing our education or interests, just redirect us. We get carried away trying to be all normal, so it’s helpful to keep us on track!
8. Be sure to describe all the other blind people you’ve ever met, in extravagant detail. We couldn’t be more fascinated by that blind guy who skied, and that other blind guy who went to school with you, and that blind girl you met on the train once—the one with the cute puppy…
9. Make a habit of asking us why we’re “here”. If we’re on the bus, ask us why we’re out alone. If we’re at work, ask us how we got the job. If we’re in class, ask us why we’re in university. If we seem offended, ignore us: deep down inside, we really enjoy presumptuous interrogation!
10. Dispense advice about how we should live our lives; the less you know us, the more valuable your feedback will be. If you need a good starting point, you can begin by analyzing our mobility tool of choice (cane or dog) and emphatically demanding that we switch. We love that.
11. Involve yourself in our love lives, specifying exactly the type of person we should date and why. If you think we should date a sighted person because they’ll be able to take care of us, we’ll want to hear all about it. If you think we should date a blind person because we should “stick to our own kind” we will be all ears!
12. Give us things—money, coupons, whatever—because you pity us and want to make our day better. Don’t be fazed by any apparent expressions of confusion. (“Oh, that’s just my gratitude face!”)
13. Stop us on the street and thank whomever we’re with for helping/taking care of/being so kind to us. It’s not as though we have real friends who genuinely enjoy our company. No: if we’re out with a sighted person, they are fulfilling a purely charitable role. They will appreciate your praise, and we will feel extra extra grateful!
14. Place your hands on us in any public place and pray. If we gently explain that we don’t want to be prayed for, rest assured that it’s just the secular cynicism doing the talking. When our sight is miraculously restored, you’ll be the first to know.
15. Make as many potentially dangerous practical jokes as you can think of. A few good ideas include warning us of imaginary obstacles (“Watch out for that tree-just kidding!”), concealing our possessions, and encouraging us to “find” you while you run gleefully around us in circles. These were a staple of primary school, and I treasure many pleasant memories from that era. Do me a favour, and bring back the nostalgia!
16. Refer to us as “that blind person” even after you know our names. Blindness is so integral to our identities that our names are really just decorative, so there’s no need to remember or use them. If we fail to answer to “Hey, blind girl/guy!” just keep trying. We’ll learn to love it.
17. Assume that our default status is “Help!” If we reassure you that we’re okay, thanks, don’t fall for it. Insisting upon rescuing us every time we cross paths places us into a position of dependence, which is exactly where we belong.