disability

I’m Not Sorry, And You Shouldn’t Be, Either

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I was chatting with Blindbeader (formerly referred to on this blog as CrazyMusician) and her husband Ben; he was telling us about a person who, upon finding out that his wife was blind, responded with “oh…I’m sorry…” He replied, “I’m not sorry, and neither is she.”

As most things do, this conversation got me thinking. This tendency for people to immediately and instinctively respond with an expression of pity or sympathy is common and widespread. I’d say more people do it than don’t, and it has always put me off a little. I realize the intent is good (isn’t it always?), but there’s something about it that makes me uneasy. You say “I’m sorry” when a loved one dies, or when someone is fired from their job. You don’t send sympathy cards or express pity when you meet someone who is gay, for example. It may make life harder for them, but it’s a natural part of them and they’ve lived with it all their lives. It would be equally absurd to say “oh, I’m sorry” to someone who is, say, an African American woman. African American women, particularly in the United States, face far more discrimination than white women, but few people would dare to pity her very existence.

So why do they do it to us?

I think it’s ultimately a result of people’s idea that blindness is a terrible fate. I’ve talked about this reaction before, but of course people who have always been blind don’t lament what they’ve never had. It’s annoying, sure. It’s frustrating. It puts us in the path of discrimination, stereotyping, and general bigotry. We struggle to find jobs and, as I’ve recently discovered, getting benefits is a monumental struggle for quite a few of us. Still, I would never appreciate someone apologizing for my very life.

The thing is, living with blindness, especially in developed countries, is not a terrible thing. My life is not so horrible that sighted people need pity me. Compassion is desirable; pity is not.

There is something equally odd about apologizing to a blind person’s loved ones, especially those who choose to be in our lives. I can only imagine the response you’d receive if you apologized to my sighted friends for having a blind friend. (I really, really don’t recommend this.) I have personally witnessed strangers say to my friends, “it’s so nice of you to help her.” They usually reply with some variant of “I’m not helping her, I’m hanging out with her. and I don’t do it because I’m nice; I do it because I like her.” I do know that a few of my instructors have also received sympathy, but they have actively enjoyed my presence in their classrooms, and I don’t think they would ever say they deserve pity just for teaching me. I don’t think my family would appreciate it much, either, even if they understand the motivation behind the sentiment. While my parents and sister have had to deal with the help I occasionally need, I don’t think they’ve ever regretted it. I don’t think they’ve ever sought sympathy. I really don’t think any of my family—immediate or extended—is sorry I am who I am. They might have compassion for the pitfalls and struggles I deal with, but I doubt they are sorry for my whole existence. I doubt they perceive my life to be so terrible that they have to feel sorry for me.

Absurdly enough, I’ve always found enormous solace in both animals and children. Some animals, especially dogs, can definitely tell that I can’t see (my cat, bless her, has not picked up on this, and still mews with indignation when I trip over her). They take it in stride, and beyond getting annoyed when I step on them, they don’t perceive me any differently—or love me any less—than sighted humans. My first dog, Buddy, would not allow my five-year-old self to stray anywhere near traffic. He’d actually knock me over in his attempts to herd me away from the road. My aunt’s dog, Peanut, will actually move out of my way when he sees me coming, because he knows I won’t know he’s there. Children always know I’m blind, and they often react with insatiable curiosity. However, once they have asked all their questions, they, too, take it in stride. They are definitely not wasting energy being sorry for me.

I’m not sorry—I’m really not. I like my life. It is full, and rich, and replete with possibility. I have amazing friends and family. My fiancé is more than I could ever have hoped for. I anticipate a lot of joy and fulfillment in my future. The last thing I need is pity.

So if I’m not sorry, then you shouldn’t be, either.

Humble Pie, Anyone?

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I certainly never pretended to be an expert on all disabilities, or indeed even on blindness in general. Still, if you’re going to write a blog about how to treat people with disabilities, you might want to practice what you preach. Most of the time, I do: I do my best to be sensitive. I try not to ask intrusive questions (unless I have permission) and I try to do my own research so that I’m not wandering around in a state of complete ignorance. This isn’t perfect insurance, though.

I interact with an awful lot of people who are blind. I know many of them personally, but I also follow a lot of them on social media. I don’t go out of my way to befriend them, but it’s good to know what everyone is up to. We can be a remarkably helpful community when we’re not busy judging each other. But I confess my knowledge of other disabilities is extremely limited. I have almost no experience with those who are hearing impaired. I only know a handful of people in wheelchairs. I’ve known a couple of people with mild autism, but not well. My experience with developmental disabilities is even more scant. So, I occasionally make the same types of mistakes sighted people make when getting to know blind people. And it dismays me every time.

Just the other day, I was chatting with a friend of mine who has cerebral palsy and who is also blind. He uses a wheelchair for longer distances, and I found myself asking, “Oh, how does that work when you can’t see? Do you have to be led?” Of course, it was an honest question, and I meant no offence at all. Like so many well-intentioned questions, though, it was a careless one. He responded with, “Led? What am I, a dog?” he then said, “I can usually follow voices.” He was gracious enough to let us both laugh it off, but it was an awkward moment, for me especially. In this area, I realized, I was as clueless as the average sighted person asking silly questions on the street. Yes, he is a friend, and yes, I meant well, but I didn’t even consider the possibility that it might have been better to either rephrase my question or just google it later and ask him how much of the information applied to him. It’s always a shock when you realize that you’re doing to others what you don’t want done to yourself.

I’ve had some equally awkward moments when physically interacting with people. A few years ago, at a university orientation, there was a student in a wheelchair. I don’t know her at all, so I have no idea whether it was temporary confinement or whether she had a permanent disability. Either way, I remember being upset because none of the other students was bothering to talk to her. She was sitting by herself, while everyone flowed around her like current around an obstacle. I’m sure they weren’t trying to be exclusive or malicious. They probably didn’t think anything of it, or, if they did notice her, they probably felt shy. It’s difficult enough to approach strangers as a nervous young student, and harder still if you feel like you might make an idiot of yourself. I’m sad to say that, while I wanted to go and speak to her, I felt stuck. Should I go over and stand beside her? Say hi? Would it be more appropriate to kneel down beside the chair so we’re at the same level? Should I just leave her alone? And on and on.

This is difficult for me to admit, because I find it really shameful. I thought I was above this sort of thing, but I’m beginning to think that few of us are. After the recent incident with my blind friend, I promised myself that I would get better at this. I will educate myself as much as I can, as sensitively as I can. Others will probably think I’m being unreasonably careful, but treading softly seems in order here, at least in some cases. Until I have legions of friends with diverse disabilities whom I can pester with questions, I will have to rely on whatever research I can do on my own. I never want to put myself in a position where I have absolutely no idea what I’m talking about. At worst I will cause offence, but even at best, I’ll feel woefully uninformed. And there’s just no excuse for that. And the shyness? The refusal to meet new people just because I’m frozen with indecision? That has to go.

I imagine many people with disabilities are far better-informed than I am. It might, however, be a good idea to take stock of your current knowledge and determine whether you might be at risk of committing the same cardinal sins as so many able-bodied people. No, it’s not the end of the world if you make a mistake, and no, you don’t have to go to the lengths I plan to go. But I imagine there’s enough humble pie to go around, at least for most of us. Dig in!

Sorry, You’re Not Disabled Enough

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Well, I’ve done it: I’ve taken the monumental step of applying for disability benefits while I finish my final year of university and join the ranks of those desperate students looking for gainful employment. After almost a full year, my application has finally been dealt with … and it has been denied.

On my application, I stressed that, while I am fully capable of working, employer attitudes—as well as workplace accommodations—pose a serious challenge. Even if I have all the right skills and knowledge, an employer is likely to skip over me in an effort to avoid hardship. I can’t even blame them, really. No one likes to take a chance on what they perceive to be a wild card. I know, I’ve been there before. (That’s another story for another post.)

Despite my attempt to explain the challenges I face, the person who reviewed my application remained unmoved. I should, she wrote, go out and purchase assistive technology (she did not specify which technology, nor did she specify where I was to get the money for such purchases). She went on to say that, once this technology has been acquired, I should have no problem finding a job. I’m not sure she realizes that setting up just one laptop so that I can use it can cost $1000. A braille display can cost $3000. If I had that kind of money lying around, I wouldn’t be applying for benefits, now would I? She concluded by informing me that I was not disabled enough to qualify for benefits. In closing, she advised me to make use of job searching tools.

Not disabled enough. Now that’s a new one. All my life, people have been assuming I’m more disabled than I actually am, and now that it matters, I’m being told my disability is, in essence, irrelevant when it comes to job searching. What I find interesting is that many blind people in Canada, the US, and the UK have little difficulty obtaining disability benefits based on blindness alone. I have other disabilities which hinder me as well, but even with all of those, I’m told to go out and buy some tech. No mention of how I’m supposed to convince reluctant employers to give me a try. No mention of how I’m supposed to live while I search (as I start repaying my student loans, of course). Most interestingly, no mention of how disabled I would have to be to receive any help at all. I’ve known other people on benefits for bad backs … surely blindness, mental illness, and chronic tension pain are equal to a bad back?

I’m not alone. I have spoken to a handful of blind Albertans who claim they were denied as well, even when they appealed. I’m currently in the process of appealing, but my hopes aren’t high. Even the process itself is frustrating. I can’t seem to get hold of anyone. Everything takes an inordinate amount of time to get done, if it gets done. Some dark part of me thinks they make it arduous on purpose, just so you’ll give up and go away.

I won’t go away.

I need this more than they need to be left in peace. I hate to admit it, but it’s true. I was raised to be self-sufficient. Pull yourself up by your own bootstraps, and all. It took me years to admit I might need government help, and to this day I cringe when I think about it. I feel absurdly guilty, even though I know I have the right to a bit of help. Struggling as I have to be approved, I’ve had ample time to doubt. Maybe I’m just grabby? Maybe I’m not trying hard enough to explore alternatives? Maybe employers are more receptive than I think they are? Maybe … maybe …

The facts don’t support my doubts, though. Take a look at this disturbing poll in which employers admit they find hiring blind people frightening; they don’t want to deal with extra expense (sometimes the expense is much lower than they think it will be). Most tellingly, they believe that a disabled person takes more and yields less. A black hole, in other words. Who wants to throw money at a black hole?

Their fears are mostly groundless. There is evidence to suggest that disabled people, once settled with the necessary accommodations, are hard workers and very loyal. We know the value of a job, and for my part, I’d never risk it because I know how precious it is. I’m not naïve enough to search for the perfect job. I don’t need rewarding, not yet. What I need is paying.

So, even with the deck stacked against me in almost every way possible, I’m stuck—at least for now. I will have to hope that, once I graduate, I find employment very quickly. I will need to pay for an apartment, and the living cost in Edmonton is only climbing higher. I will need to begin paying back my student loans. Once my fiance moves here, I may need to support us both for awhile until he can find a job himself. We are both blind, and both qualified to do useful work. We are both, theoretically, in demand. And yet our resumes will find their way into the recycling bins more often than not. Our calls will go unreturned. Hiring managers, initially so excited by our qualifications, will suddenly lose interest without any apparent provocation. They will make feeble excuses, because they can’t legally say, “sorry…you’re blind, so we don’t want to deal with you.”

Eventually, I’ll get lucky. I’ll find a company that is willing to give me a shot. I’ll do well, because I’ve been trained well and because I am grateful for every opportunity. I’ll be okay, eventually. Haven’t I gone on and on about how blind people live full, rich lives?

In the meantime, though, I’ll just have to hope that someone decides I’m disabled enough.

Go Away, Guide Dog Goop!

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I have known a few guide dog teams personally, and have always been struck by the devotion they feel toward each other. The human practically radiates protectiveness and trust, while the dog gives the impression that it would do literally anything for its companion. Even on “bad days”, they seem so endearingly optimistic. Calling it cute would be cheapening it. It’s pretty inspirational, though, and I never throw that word around.

As we should all know by now, I have no interest in getting a dog myself. Much like a woman who does not want children, I have been hassled about this decision for years. And, while I can appreciate the bond between dogs and their handlers, I don’t feel that tug in my chest that says “I want”. I can admire it, but I can’t make myself desire it.

As you can imagine, I find it difficult to relate to guide dog handlers. I give no more thought to my cane than I would to the shoes I use to walk or the jacket that keeps me warn. I’m not used to considering my travel aid an actual companion. When I get home I fold my cane and stick it in a corner. Guide dog handlers are always interacting with their charges in some way, even if it’s peripheral. Like those with children, guide dog handlers are often expecting me to relate to experiences I won’t ever have … and it gets hard after awhile. I do know some very considerate handlers who only give me as much information as I ask for. Some, however, seem to lack that social filter which says, “That’s enough”.

So, like many people who don’t want dogs, I am subject to everyone else’s constant talk (well, mostly posts) about their guide dogs. You know how there are certain parents intent on documenting every single move their children make? It’s like that … only somehow worse. I can’t put my finger on why, but the myriad cutesy posts about the fact that Spot has managed to walk down one whole block successfully drive me insane. I don’t mind the odd congratulatory post—dogs can bring their handlers through some terrifying conditions—but the line needs to be drawn somewhere. I don’t need to know that your dog is currently asleep under your desk. I don’t really care if your dog was behaving particularly well in harness today. I am so sick of reading about how much your doggie loves his or her treats, or ball, or squeaky toy, etc. etc.

I probably sound very grumpy and intolerant, and maybe I am. But here’s the really infuriating bit: there are certain handlers intent upon glorifying their bond with their guides to the point where you’d think they were superheroes just waiting to save the world. These people are the type who mingle their signatures with their guides’ names. They write lengthy blog posts from their dogs’ perspective. They troll forums about “guide dog vs. cane” debates, and interrupt diplomatic discussion by spouting things like “Don’t you dare devalue the bond!” and “Once you have a dog you will experience true independence and fulfillment!” and so on. They are few, but they’re not quite far between enough for my liking.

Go ahead: take photos of your guide dog. Wax poetic about the accomplishments you and your dog have managed today. Painstakingly document every single step of the training process, if you really want to. Just please…don’t be offended if I’m not all that interested. I’m happy for you, I really am; but, like overenthusiastic parents who assume I want to know every detail about their kids, the goop you occasionally ask me to process can be a little hard to slog through at times. Please don’t be offended if I say “I’m really not interested”. It’s honest, not malicious. We all have the right to filter the content we consume, since there is so much of it. Please let me filter mine.

Author’s note: Before you ask, this post is *not* directed at anyone in particular. Please don’t come to me protesting that you don’t do stuff like this; I’m probably not talking about you.

Unfriendly Reminders: On the Dangers of Complacency

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While walking home a few nights ago, I got lost. This would have been okay, but I was traveling a route I know intimately; I’d used that route for almost three years without mishap. That might have been okay too, except that it was -25C outside and, since it is supposed to be a two-minute walk, all I had was a pair of woefully inadequate mittens and a winter jacket. I still don’t know exactly where I went wrong. I was navigating the crosswalk, the same as usual, and I must have veered sharply, because I missed the sidewalk entirely and ended up wandering into relatively unfamiliar territory. It was nearly one in the morning, so there was no traffic to act as an auditory guide. It was one in the morning, so I couldn’t even use what little vision I have to help me. It was one in the morning, so I was totally alone.

It was bitterly cold—so cold that even I, a brave little Canadian, had to admit I was getting a little anxious. I took off my mittens to use my phone. My fingers were so cold that the phone didn’t even register my touch. I had to use Siri to call a nearby friend so she could rescue me. Meanwhile, I was trying to find a safe place to stand. I settled for a precarious perch on an ice-encrusted snowbank, reasoning that this, at least, would be traffic-free should any traffic actually show up. Luck smiled on me that night, so my friend said she was coming to get me. I waited. And shivered. And wondered what in hell I’d done to get myself so lost in such a short amount of time. And I worried.

It took my poor friend a while to find me, so I had ample time for reflection. Before long, unwelcome tears were emerging, freezing as quickly as they materialized, naturally. I had grown complacent, I realized. I had failed to bring a backpack containing warmer clothes and some headgear. I had already spent a lot of time that evening walking around outdoors, so was pretty chilly to begin with. I didn’t count on getting lost. I thought I was infallible, with this route at least. Maybe, I thought grudgingly, there was a lesson here.

There are, of course, some obvious lessons: don’t go out in dangerously frigid temperatures without carrying extra clothing. Don’t count on having help so late at night if something happens. Invest in a pair of gloves that can be used with a touch screen, perhaps. The most uncomfortable lesson, though, is don’t ever, ever grow complacent.

Confidence is fine. We all deserve to take a few things for granted, particularly routes we’ve been navigating for years without a single serious misstep. Sighted people don’t have quite the same worries as we do when they get lost, so it’s comforting when we can enjoy that level of assurance, at least in certain locations. Nine times out of ten, everything will go as well as you hope it will.

But be prepared for the times when it doesn’t. Know that, sometimes, anything that can go wrong will go wrong. Know that the climate may not always be kind. Know that people may not be around to assist. Know that you are not perfect, and that you can always make mistakes you never even imagined. Confidence is your friend; complacency, your enemy.

Many of you are likely shaking your heads: “Getting lost is not that bad, Meagan! It’s not a life or death situation!” You’re right, usually it isn’t. Most of the time, if we get lost, we wander around until we find a landmark to get us back on track. We approach someone and ask for help. We use our orientation skills to figure out where we went wrong so we can backtrack. When all that fails, however, (and it will fail), you’re left with unpleasant consequences like frostbite, dangerous neighbourhoods, and unexpected hazards or obstacles. Worst of all, though, you run the risk of becoming even more thoroughly lost. I have wandered through sketchy neighbourhoods after 11:00 p.m. and I don’t recommend it. I think my blood alcohol level rose just from being in the vicinity of some of those people.

By all means, take precautions. I chose not to do so and I paid dearly for my negligence. Next time, I might not have a friend I can call at a moment’s notice. I’ve been hopelessly lost before in nasty weather, and it never gets easier with time, I can promise that. What I’ve come to realize, though, is that more than precautions, an attitude adjustment is sometimes most valuable. Tempting as it may be, autopilot is never really an option—not when you’re blind. It doesn’t matter if you’re walking with a group of sighted friends; they can get lost, too. It doesn’t matter if you have a guide dog; you’re supposed to lead them, not the other way around. It doesn’t even matter if you know this route inside out and backwards. You’re not invincible. None of us is.

For as many years as you are on this earth, you will discover new and interesting ways in which you can screw up. Learn to accept this. It’s an unavoidable part of being human, and unfortunately for disabled people, the consequences are especially dire. But for every bonehead mistake you make, there is a lesson. As they say, life is a harsh teacher, but an effective one.

Safe travels, guys.

Confessions of a Blind Binge-reader: It’s Not Just About the Books

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Anyone who knows me even a little is aware that I’m a devoted bookworm. I think nothing of finishing a book in one day—sometimes one sitting, depending on how engrossing it is—and those who follow me on social media are privy to my prolific reviewing habits on Goodreads. I spend much of my time in class, studying, socializing, and reading material not generally considered fun (though I’ve been known to take pleasure in reading my sociology textbook now and then), but I have always found time for leisure reading. I have sometimes been too busy to sleep; too tired to study; too desolate to go out. I don’t think I’ve ever been too anything to read. Reading is by turns a learning experience, an exploration of human nature, and an escape when things get too difficult. In short, I read for all the reasons anyone else reads.

I’ve been teased about the sheer volume of books I get through; I’ve had a friend ask, without a trace of irony, how many books I read “today” (it wasn’t even noon at the time). I know many other people who read at least as much as I do, but I admit that it’s not just about the books. Until I was given unfettered access to the internet at age fifteen, books were a luxury. Braille was hard to come by; most of the books I read in school were lent to me by an Albertan organization dedicated mostly to producing textbooks. However, they did boast an impressive collection of leisure reading, particularly classics. I devoured so many books as a student that by the time I was fourteen, I’d exhausted more or less every book they offered. I then signed up for the CNIB library, which sustained me until I gained better access to Ebooks. Even then, titles took months to arrive after they’d been ordered, and while the library did send me random books suited to my age group, they were often falling apart at the seams, badly squashed, or covered in suspicious substances resembling, at least in one case, strawberry jam.

Even when I did have books to read, they were always limited. I had to choose from a select few, and I had to return them as quickly as possible so that I could receive more. I remember slogging laboriously through books I absolutely hated (If you ask my former EA, she’ll remember how much I complained while reading “Huckleberry Finn”) because I didn’t have much choice. When your selection of literature is scant, you can’t get too picky about what you read.

Forget about buying my own books: braille books were so rare and so costly that when I won my first ever book in a draw, I kept it long after I’d wrung any enjoyment from it. I still have it to this day, and I’m not sure I could just hand it off to someone else. You never forget your first braille book.

It was the same with audio books: while I was growing up, audio books were not nearly as prevalent as they are now. They were expensive, and thus were quite rare. I remember literally shrieking with delight each Christmas when my parents would present me with the newest Harry Potter book, or the next volume of Paolini’s Inheritance Series. Now and then, people would find audio books at garage sales or in bargain bins and I’d be treated to some of the most random selections you can think of. When I was nine, someone gave me “The Green Mile”, obviously not thinking this through. My mom happened to listen in while I was reading one night and just about lost her mind when I asked, with total innocence, what a “faggot” was. As a kid, I was introduced to the autobiography of Mia Farrow (complete with the famous sex scandal involving Woody Allen), Steinbeck’s “Tortilla Flat”, and Grisham’s “The Client” … these were just a few of the completely inappropriate, yet no less enjoyable, reads I was exposed to via audio. I had an interesting time back then, I can tell you.

When my reading world expanded and I suddenly had almost every book in existence at my fingertips, I hardly knew what to do with myself. I began binge reading—grabbing every mildly interesting book I could find and ravenously searching for more. One of my most persistent fears, all throughout my life, was running out of reading material. Gone are the days when I had to read the Old Testament because it was summer vacation and I didn’t have any books to read. Gone are the days when I’d have to struggle through Rudyard Kipling’s “Kim” even though I despised every page. Now, I can read what I want to, without fear of consuming too much material too quickly. Now, I don’t have to ration my books, because there will always be another one waiting for me.

This is the kind of freedom most sighted readers have enjoyed all their lives. The public library stocked nearly every book they’d ever want to read, and they always had access to newspapers and magazines. There was no need to read 400 pages of something they hated just because books were too scarce. The great thing is that blind kids of the future will not have to go through what I and many other blind people did. They will have access to digitized braille (as well as actual books, of course) and plain text ebooks. They will be able to read the “back cover” and decide which books interest them. They will not have to wonder where their next book is coming from. Nearly every bit of reading material—whether on paper or on the web—will be accessible to them.

And, just like sighted people, they won’t have any idea how lucky they are.

You see, it’s not just about the books. It’s not about reading so much that people will take notice and praise (or ridicule) me. It’s about freedom of choice, and equal access, and autonomy. It’s about spending my time the way I want to, without worrying about having to ration my enjoyment.

So, fellow blind binge readers, enjoy your freedom. Enjoy the fact that in this, at least, equal access is yours. And if you think you might read just a little too often sometimes? If you worry that you hoard books? If you think you’re silly for still fearing that you’ll run out sometime, even when you know better? Give yourself a break. Old habits die hard. It’s worth remembering where they came from.

What Is This, Anyway?

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I’ve sometimes pondered how much of my waking life I’ve spent simply identifying stuff. Being blind necessitates devising elaborate strategies to keep track of things like canned goods, important paperwork, and even clothing, depending on the complexity of your wardrobe. There are a lot of tools out there to help us, from free apps like CamFind to very costly Pen Friends—devices that allow you to “tag” certain items and have the pen tell you what it is later. The latter is efficient, but not everyone has a couple hundred bucks to shell out for it.

As I’ve said, there are some free (or inexpensive) apps designed to help us out, but they’re often difficult to use properly. I, perhaps more than many blind people, am hopeless at taking good pictures of things; the other day I was going through my tea collection, trying to find a certain bag, and I had to take them all out and sniff them to find what I was looking for. I eventually lost patience (I have a lot of tea), and pulled out my cell phone to use image recognition. One little problem: the pictures were either too blurry, or taken too close up, or taken too far away, or entirely inaccurate because I’d photographed my lap, or the floor, or anything else but the bags I was trying to identify. Generally, you just point and shoot, but I swear there are days when the apps just don’t want to cooperate. In fact, when photographing a particularly stubborn bag, my app cheerfully informed me that the tea was called “tips about relationships”. Gee, thanks.

Lighting and placement are other concerns that I struggle with. I don’t always consider how dark it is, or how many shadows might shield the product in question. I also sometimes accidentally place the product among others, which makes it harder for the app to know what I’m trying to photograph. I get better at it the longer I play with it, but I’m still a long way from perfect.

There are some relatively unusual tips and tricks I’ve picked up over the years. I can, for example, identify a can of green beans by shaking the can and listening to the squeak the beans make. No other canned vegetable that I know of makes that particular sound. When I tell sighted people about this, they don’t believe me until they try for themselves. I’m also good at finding minute differences between, say, a matching set of shampoo and conditioner, though I have had some interesting experiences when the bottles are identical.

Despite all the technology, organizational systems, and detail-oriented planning, I’ve definitely gotten myself into some very strange situations. I once found what looked like a candy dish on my living room coffee table. Thinking that my mother had thoughtfully put out candy, I picked up one of the curiously smooth treats and popped it into my mouth. All I tasted was dust: I’d tried to eat a decorative rock. I’ve put conditioner (and body wash) in my hair instead of shampoo; I’ve nearly put frozen berries in a dish instead of peas (luckily the smell tipped me off); I’ve poured instant oatmeal into my travel mug instead of hot chocolate mix. All this, and much more.

Gregg is fond of telling the “bath bead story”. When he was a little boy, he found a strange-looking dish in the bathroom which appeared to be filled with candy. Having disassembled (and failed to reassemble, naturally) a gumball machine the day before, he assumed that his mother had transferred the gumballs to this dish. Undeterred by the fact that people don’t usually store candy in the bathroom, he grabbed a candy and took a big bite. He immediately found his mouth filled with scented foam. he’d eaten one of his mother’s bath beads. He’s also had a hair mishap; he got a shampoo bottle and mayonnaise bottle mixed up, and nearly washed his hair with the latter. I’ve since informed him that mayonnaise is actually good for the hair now and then, but I’m not sure he believes me.

If there are any blind people out there who have good stories of this nature, please share them in the comments; we’d all love to indulge in a little schadenfreud…uh, I mean, we’d all love to share our compassion and sympathy. Yeah, let’s go with that.

Believe Me: There Are Worse Things

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I’ve often observed that people react to blindness as though it were the worst fate they could possibly imagine. Of course, for some it probably is (though I do wonder how good their imaginations really are). Sympathy (sometimes misplaced, sometimes welcome) abounds for visible disabilities like deafness, blindness, paralysis and so on. What we lack, though, is compassion for those with invisible disabilities–and they may be the ones who need it the most.

I’ve always been blind, and most of the time my life has still been full and happy. But I carry heavier burdens, too—burdens which aren’t easy to see. Among other issues, I suffer from chronic tension pain, migraines, and mental illness. Unless you come upon me walking out of a psychiatrist’s office or holding my head in pain while I throw up on the sidewalk, you won’t know any of this simply by watching me go about my day. Blindness causes me to suffer in highly visible ways; it’s hard to miss it when I trip over a chair or smash headlong into a wall. At job interviews, employers become immediately nervous as they mentally catalogue all the problems they anticipate. They wonder about how I will keep up with the workload. They wonder how I’ll navigate the building safely. They wonder whether my screen reading software will be supported by their current systems.

They don’t wonder how I’ll attend work regularly. They don’t wonder how I’ll find the emotional, mental, and physical energy to make it through the day without collapsing. They don’t wonder who will drive me home when I’m too weak and sick to walk unaided. They don’t think about the leave I might need if my mental state becomes too precarious.

They can’t wonder these things, because I don’t go out of my way to reveal them. Some stand behind the policy of full disclosure: get it all out of the way now so that awkward questions and explanations aren’t needed later. Really, though, If an employer won’t accept me because of a relatively superficial disability—one that can be easily accommodated—how will they feel when I reveal far more debilitating disabilities? Let’s face it: having malfunctioning eyes has nothing on being in excruciating pain, or feeling so low that you want to die.

Sometimes, I fear that people will judge me harshly if I divulge too much about my “other” disabilities. I worry that they’ll think I’m crazy, or whiny, or simply delusional. Will they label me an attention-seeker? I mean, I’m blind plus six other issues? When does it become suspicious-looking? I’ve been blessed with many compassionate people in my life ranging from friends, to coworkers, to instructors. They’ve done their best to let me know that I’m okay, no matter how many things are wrong with me, and that I don’t have to feel guilty about what I can’t control. Conversely, though, I’ve had people become frustrated and offended when I cancel plans due to a sudden migraine (it’s not like I plan them!) or bow out of an engagement because I’m feeling too down to even get out of bed. Each time this happens, my first instinct is to blame myself, even when I know better. It’s easy to convince people that my broken eyes aren’t my fault; it’s harder to convince them that I don’t choose to be depressed, or lie abed all day in pain. Some of them won’t say it outright, but it’s clear as day that they doubt me. I can’t articulate what it’s like to know that it is only my least debilitating disability that people will feel any empathy for. I don’t need help across the street as much as I need a sympathetic ear and maybe a hug.

The pitying sighs get to me after awhile, partly because I don’t need them (I get along fine, thanks) and partly because they are so misguided. I don’t want a pat on the shoulder because my eyes don’t work; they never have and they probably never will. I don’t need them in order to live contentedly. What I do need, though, is energy, will, and strength. My invisible disabilities strip all of that away on a regular basis, leaving me to struggle along in the wake of emotional and physical suffering.

Now, before I go any further, let me make it clear that I’m not saying that blindness doesn’t have its downsides. I’ve done little but write about them for the past few months. I’m also not trying to run a fishing expedition here: I’m not claiming that everyone should begin pitying me for something other than blindness. Ideally, I don’t want any pity at all. But considering the ample sympathy that is heaped upon those with visible disabilities, it would be nice to distribute some of it to those whose pain is less evident but no less unbearable.

No, you won’t be able to tell who is suffering from what unless you make a habit of asking people intrusive questions (and we all know how I feel about those). But if someone comes to you with a clearly visible disability, don’t automatically assume that it is the only battle they’re fighting. For as John Watson so aptly observed, you should always be kind, for “everyone you meet is fighting a hard battle”.

It took a great deal of personal courage to write this post, humble as it is. As I’ve said, I usually take pains to hide these parts of myself, lest I be misjudged or shunned. But as Gregg has taught me, silence is our worst enemy here. If people like me don’t speak up, then no one can understand. You can’t offer compassion for what you don’t know exists. It’s blogs like these which need to be written. It’s conversations like these which need to take place. We need to know that we can be honest. I live for the day when being frank about what I can’t control will not bring me shame or guilt, but relief and a sense of peace.

Take Off the Blindfold

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When I was a child, my peers would sometimes make half-hearted attempts to understand what it’s like to be blind. They’d cover their eyes and stagger around a bit, or they’d borrow my cane and wave it carelessly from side to side, effectively clearing a path of about a half mile radius. It was cute, and always done with kindness, so I never bothered to inform them that mucking about with a stick for two minutes wouldn’t offer them the insight they were looking for. Others tried putting on those silly glasses you can get that are intended to demonstrate different visual impairments (one lens is foggy, the other very blurry, etc.). Again, wearing these goofy things for five minutes was not going to show anyone what blindness is like; all it could do was cause them to trip a few times and, worst of all, pity me even more than they already had. After a few attempts, people would usually conclude that blindness must really, really suck (in some ways they’re not wrong) and go back to exclaiming over how unimaginable it is for them. I was okay with that.

Some people don’t outgrow this notion, though, and pursue more serious (though equally fruitless) endeavors on the quest to understand blindness. People will blindfold themselves for a day or two, trying to accomplish everyday tasks by touch—usually neglecting their other senses in the process, of course. Others would play with the screen reader on my phone, since the iPhone has the capacity to activate a “screen curtain”. With this feature active, it’s impossible to see the screen, and the user must rely on Voiceover, the phone’s screen reader, to operate pretty much everything. The purpose of such a feature is increased privacy for blind users, who can’t defend themselves from prying eyes. Naturally, blind and sighted alike thought it would be interesting to use this feature to illustrate what blindly operating a phone would be like. This bizarre idea was dubbed the “screen curtain challenge” … and it made me crazy.

First of all, it’s ludicrous to believe that closing your eyes or blindfolding yourself for a day (or even a week) would give you more than a glimpse into what my life is like. If you have always been able to see, then you won’t have any of the skills or instincts I’ve picked up over twenty years of being without sight. Your brain does not know how to use sound to find doorways, touch to distinguish brailled letters on a page, or smell to navigate a cafeteria. Your senses pick up the same things mine do, but your brain doesn’t know how to attend to all that information. You are so accustomed to leaning on your sight for everything (not a criticism—it’s how you’re wired), that the subtle nuances I rely upon for everyday travel will be utterly lost on you.

Second, even if you could momentarily experience what it’s like to travel as a blind person (or indeed navigate a phone like a blind person), nothing but years of experience will enlighten you as to the nature of the psychological and sociocultural background of someone who has either been blind from birth (as in my case) or lost his or her sight. I won’t go so far as to claim that it’s a different world; my aim is to build bridges between blind and sighted, not isolate us further. I will say, though, that the emotional, mental, and physical experiences we accept as part of our daily lives will be totally unfamiliar to someone who has always been able to see. This is probably true of just about any disability, though I haven’t the authority to say for sure.

By encouraging ideas like the “screen curtain challenge”, we are shortchanging both blind and sighted people. Blind people, because the sighted expect that they know how we feel after a few hours of blindfolding themselves. Sighted people, because they cannot possibly be expected to figure out things like screen readers in just a day or two. After all, blind people had to learn to use their ears, and fingers, and noses; we weren’t born with a handbook in our brains. We had to figure all this stuff out, and sometimes it takes a lot of dedication to master certain skills. So how can we expect sighted people to get an accurate picture of what our lives are like if they don’t have the same advantages (or disadvantages) that we have?

If you want to understand us, talk to us. Ask us questions. Try to see (ha ha) things from our perspective, all the while accepting that you’ll never get a comprehensive picture. Until technology develops to the point where we can experience each other’s thoughts and memories, let the curtain stay where it is, take off your blindfold, and for God’s sake put that cane away before you put someone’s eye out!
P.S. Thank you for trying so hard. We know you mean well, and most of us want to understand you, too. Let’s talk.

Go Ahead, Laugh!

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People can become very twitchy about humour in relation to disability. Laughing at any aspect of it can seem a transgression of the gravest sort. How could anyone with a conscience make fun of the poor little blind girl, right? Barbaric!

Contrary to this belief, I find humour inexpressibly helpful; indeed, sometimes I’m not sure how I’d survive without it. There are many situations in my life that seem to demand tears. When I can’t (or won’t) cry, I can always laugh. Laughing can defend me from the scorn of others; it can shelter me from the humiliation of what has just happened; it can strengthen me in the face of whatever it is I’ve messed up this time; and it can encourage others to laugh the hard stuff off, as well.

Take a simple blunder like this one: during a camping trip many years ago, I was visiting with my sister, a friend of hers (a stranger to me), and a cousin. All evening, my cousin had occupied the same chair. I usually pay attention to where people choose to sit, as it makes it easier to interact with them with a modicum of social grace. Believe me, I need all the grace I can find. Unfortunately, this system isn’t infallible, as I was soon to discover. Assuming that my cousin was still seated where she’d been all night, I went up to her from behind and hugged her, crooning “I loooove you!” for good measure. Without missing a beat, my sister’s friend replied “Aww! I love you too, Meagan!”. I wasn’t about to cry…so I laughed. This wonderful person had the grace to laugh with me.

Social slips like that one are sometimes enough to make a rather shy girl like me recoil in horror, retreating into a ball of humiliation until everyone else has long forgotten the incident. I have, however, learned to use humour as a tool to handle embarrassment with confidence—something that is essential when trying to put others at ease. If you’re planning to pursue a career in communications and public relations, as I am, networking is an unavoidable component of the field. I learned early that if I pretended I was comfortable with my “blindness mistakes”, others would become comfortable with them as well. Getting them to giggle with me over them is even better, so I aim for a laugh almost every time. Of course, if the slip is tiny, it’s sometimes better just to let it rest; chances are whomever I was with didn’t even notice it anyway. No need to draw more attention to myself than I already do. And you know what they say about faking it till you make it…that really works. Since using humour as an instrument of social bonding, I’ve become much more at ease in my own skin, even in the most terrifying of public situations.

I’d like to address something far more important, though, and perhaps far less well-known to people in general. From a very early age, I have acknowledged the benefits of a little gallows humour when things go horribly, horribly wrong. While blindness doesn’t often put me into devastating situations akin to, say, terminal illness, it certainly tests my patience and fortitude at times. I’ve talked about getting hopelessly lost, being denied essential opportunities, and struggling with a minor identity crisis. All these things would have been so much harder to bear had I been unable to laugh at them. Even some of the small stuff—submitting essays with messy fonts, groping strangers on the bus, and tripping that poor guy on crutches (more on that later) seem a little worse than they actually are while they’re happening.

Reactions range from admiration to outright horror when I make light of serious issues surrounding my disability. It’s as though people think I’m degrading myself by laughing at it, even though it’s my issue to laugh at if I please. “Don’t talk about yourself that way!” they exclaim, leaping onto soap boxes that have appeared from thin air. I always respond the same way: “I need to laugh. If I don’t, I’ll cry, and nobody wants to see that.”. While there’s nothing wrong with venting frustration or sorrow in whatever way suits, I generally prefer a good belly laugh to a storm of tears. Besides, I’m far less attractive with a red nose and puffy eyes and, as we all know, unattractiveness is a tragedy!

It is true that the suffering experienced by those with disabilities is no laughing matter in general. It is not to be taken lightly and should be treated with some solemnity and respect. With this in mind, it is perfectly acceptable for both the sufferers and those closest to them to find a little humour in a bad situation, especially if the alternative is to wallow in despair. I realize that this might seem like clichéd advice, but it’s advice that few people actually seem to take. Maybe it feels like crossing an invisible line, over which you might be considered callous or unfeeling. But they don’t keep doling out this advice for nothing. It really works; this pronouncement comes from a veritable flood of experience. I’ve been in just about every hopeless situation a blind person can find themselves in, and humour has helped me out of nearly all of them.

We’ve all heard the wry, brave humour of the desperately ill, bereaved, and endangered. Their ability to laugh at themselves and their various predicaments isn’t just something to be admired; it is something to be imitated. Even if you don’t feel in the least strong, laughing at your problems will make them seem more manageable, even if nothing has changed. Laughter, after all, means that you’ve gained some distance and perspective on the issue, and are able to find whatever silver lining there might be in it. It’s not just about putting on a brave face and displaying the appropriate heroics. It’s also about lightening your burdens as much as you can, and allowing others to lighten theirs as well. You can be sure that if you’re suffering, someone else is suffering with you. Do them a favour: make them laugh.