misconceptions and Myths

“But…I Meant Well…”

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Ah, good intentions: everyone’s favourite get-out-of-jail-free card. It seems that you can get away with anything, as long as you were trying to be a good person. Every day, people excuse discourteous, disrespectful, and even dangerous behaviour because they “meant well.”

A stranger assumes a blind girl wants to ride the escalator, leading her onto it without explanation. Dangerous, but it’s okay, because she assumed she was being kind.

A mother rearranges her son’s entire apartment while he’s away, so that he doesn’t know where anything is when he returns. Discourteous, but it’s okay because she was just trying to help him out.

A teacher addresses her third grade class, assigning a student to play with the only blind member of the group. Humiliation (for the student) and resentment (from the rest of the class) follows. Disrespectful, but it’s okay because she was just trying to foster tolerance and inclusiveness.

I’ve said a hundred times that it’s okay to make mistakes. I’ve also reassured sighted people that their kindness is appreciated, even when it’s misguided. What I’m weary of doing is looking the other way when someone tries to cancel out the damage they’ve done by citing good intentions. I’ve witnessed people say and do terrible things in the name of “meaning well”, and I’m sick of pretending I’m okay with it. It’s not okay with me, and it’s not okay with the vast majority of blind people I know.

It seems to stem from the belief that any help is good help; any kindness is worthy of gratitude; and every time a sighted person deigns to do something nice, we should all be brimming with thanks. But what if we don’t really want that specific help? What if we like how our apartments are organized? What if we had no intention of going on that escalator, and could find it ourselves if we did? And what if we prefer to make our own friends, rather than having people assigned to us?

Generally, we know exactly what we want, and we’re normally okay with asking for it. This does not give us license to be demanding, but it does afford us the opportunity to choose which types of assistance we can benefit from and which we’d rather discard. You might think you’re helping me if you follow your charitable instincts and “fix” bits of my life for me, but the cold, hard truth is if I didn’t ask you to do it, chances are I didn’t want it done.

Still confused? Try a thought experiment. How would you feel, as a sighted person, if your mother came over one day and waited till you left to completely reorganize your home? You did not ask her to do this for you, and you definitely did not appreciate having to hunt for everything once you got back. It’s even worse for blind people, because it takes us so much longer to find everything once it’s been displaced. We occasionally use complex systems of organization, so moving our stuff around has greater consequences than you might imagine. That’d be fairly irritating, yes?

Let’s skip past the sheer inconvenience and danger of having yourself or your belongings tampered with in the name of good intentions. Let’s amble over to the area of respect, because it needs attention: if a sighted person treated a fellow sighted person the way they treat blind people, there would be uproar. You’d need an awful lot of nerve to go around messing with other people’s things in general, wouldn’t you? And you’d have to have even more nerve to grab a complete stranger without permission and direct them elsewhere, right? So why does overbearing and presumptuous behaviour magically become acceptable if the person in question is disabled? Is your need to do your good deed of the day more important than their need for personal autonomy? I hope not!

Most people aren’t consciously aware that what they’re doing is neither wanted nor appreciated, but I know an awful lot of people who have been warned, and warned again. Still, they persist. Parents and other relatives, especially, are notorious for this; they assume that whatever they’re doing is okay, even if they’re asked to stop. They mean well, and that should be the only thing that matters. Shut up and be grateful, why don’t ya?

It’s not acceptable. It never was and it never will be. If you want to flex your kindness muscles—and I recommend that you do, by the way—ask how you can help. Except in very, very special cases where a disabled person is in immediate danger, put your good intentions away and pull out respect. That is something I can be grateful for.

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.

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.

The Word Is Blind

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“So, you’re blind—I’m sorry! I mean…visually impaired—I mean…uh…I’m not sure of the…terminology…”

I’ve been called a lot of things in my life (and, yes, most of them were nice). Many of the labels people have placed on me because of my eyes are diplomatic but straightforward: visually impaired, low-vision, visually handicapped, physically handicapped, disabled, etc. These are all accurate, so I have no objection to them (though low-vision perpetuates the misconception that I see far better than I actually can). Of course, I’ve also been called—and heard others being called—more “politically sensitive” terms: differently abled (really?), differently seeing (uh, no…), special (gag me with a spoon, please), and handicapable (I wish I was kidding).

We are currently surrounded by an environment that demands political correctness and unbiased language. Normally, I’m one of the most enthusiastic supporters of bias-free language, because I understand the power of the words we use. Even when we aren’t conscious of it, the words we choose to use carry plenty of potential impact. Language really does matter. In that light, I understand and support society’s efforts to attach meaningful, accurate labels to minorities, particularly labels free of derogatory associations. If I were conducting a business meeting and someone referred to me as a “blink”, I’d be rather offended: that’s not how you treat someone, especially in a professional setting, unless you know them well and have an intimate knowledge of their personal preferences. I would no more call a disabled stranger by a derogatory name—lighthearted as I may feel at the time—than I’d call my lesbian best friend a dyke. Personally, I don’t consider it a polite (or even wise) endeavor, no matter how good my intentions are.

But, as always, there’s another side to this coin. There is such a thing as tiptoeing to such a degree as to invite ridicule, and it is my opinion that some of the terms listed above are just begging to be mocked. I mean, come on—“handicapable”? That sounds like a bad joke, not a “politically sensitive” label to use in official settings. It sounds, in fact, like someone’s terrible idea of a catchy hashtag. Please, leave that condescending nonsense on Twitter where it belongs. Other terms, while being less deserving of derision, commit the grave sin of being totally inaccurate and misleading. Take “differently seeing”, for example: I don’t “see” differently than other human beings. True, I tend to use my other senses more often than sighted people, but as I’ve previously explained, those senses are exactly the same as yours. They’re not heightened or supercharged in any way; I simply know how to use them, and have little choice but to rely on them. Seeing differently would necessitate extra organs (or perhaps extra brain function) and I can assure you that I definitely don’t have any mutated eyes or visual cortices lurking around. I’d tell you if I did—imagine the money I could make from the media buzz alone! (And, no, I am not giving you permission to come and investigate for yourself.) It’s also worth mentioning that I despise platitudes like “you can see with your heart”. I understand the kindness behind such pronouncements, I really do, but we all know it’s gooey, sentimental rhetoric, right?

In general, I believe in calling a spade a spade. Dancing around the simple facts with labels meant to encourage respect and sensitivity does more to annoy me than set me at ease. It’s impossible to keep up with the terminology that is en vogue on any given week. For the longest time, it was my impression that “visually impaired” was considered the acceptable term for official documents and workplace discourse, as determined by the CNIB. When I was working for them a couple of years ago, however, I quickly discovered that I was doing it wrong: the new term was “partially sighted”. Visually impaired, it seemed, was sooo last year. Who knew? I certainly didn’t…

I’m not sure what it is about blindness in particular that makes people so timid, but I’d love to relieve them all of that heavy burden. It’s okay to admit that someone is disabled—yes, disabled, not “differently abled”. Some people have stuff wrong with them, and that’s not a horrible thing. It’s not a sin to openly admit that someone else isn’t a perfect specimen of efficiency. Flaws don’t have to be scary, and disability doesn’t have to be taboo. Set aside your worries about sensitivity and correctness for a moment, and listen: my eyes don’t work. I cannot see. Therefore, the logical conclusion is that I am blind. Not “differently abled”, or “differently seeing”…just “blind”. If you want to get really technical, you can use “visually impaired” for people who have enough vision to read large print and use screen magnification. Otherwise, “blind” is perfectly acceptable, at least to me and the majority of blind people I know. If “blind” scares you, go with “visually impaired”; you’re very unlikely to upset anyone that way. I have met a very few people who were especially sensitive about semantics, but even they were all just fine with “visually impaired”.

It really irks me when people treat “blind” like a curse word—as though the last thing anyone would ever want to admit to being is blind. Believe it or not, I’m rather okay with the fact that my eyes don’t work, and thus I am okay with being called blind. It’s what I am. I’m no more uncomfortable with being referred to as “blind” than I am with being referred to as “female”, or “brunette”, or “human”. These are all natural parts of my being and while I’m not necessarily proud of my disability, I’m at peace with the fact that it exists and that there’s a word for it. So, rather than wasting your valuable time stumbling over the “correct” terminology, just call me “blind”, because that’s what I am. It’s not insulting, or insensitive, or ablest; it’s honest.

Of course, my favourite thing to be called is “Meagan”. I have a name, so please use it. If you know my name, there is no reason whatsoever to refer to me as “the blind girl”, or “the disabled girl”, or anything similar. Names are given for a reason; please do me the courtesy of using mine. After all, more than “blind”, I self-identify as “human”, just like you.

Author’s note: If you are reading this from somewhere other than Earth and do not, therefore, self-identify as human, please forgive the generalization. I wouldn’t want to use improper labeling!

You Should Get a Dog, Because…

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I never intended to write more about the guide dog issue, both because the blog title itself and my introductory post should speak for themselves. However, I decided to address something that has been plaguing me for years, and that I’ve only just been able to fully articulate. You see, I can handle other blind people encouraging me to get a guide dog; they have them, they love them, so it’s only natural for them to nudge me toward it. Most of them are happy enough to respect my decision once I’ve asked them to stop. The public, on the other hand…

 

Ever since I can remember, people (family, friends, and even strangers) have been telling me to get a dog. Sometimes, they even have reasons that sound great on paper like “improved independence” and “safety” etc. Here’s the issue, however: when people give these reasons, they are either poorly-researched or entirely irrelevant to my needs as an individual. They often give reasons they themselves might want a dog if they could have one, failing to consider my own needs and preferences. While they don’t mean to be either, shaming me for not wanting a service dog is hugely selfish and judgmental.

 

Below, I will list some of the most common reasons people have given me, with my usual explanation as to why they don’t apply to me (or, in a few cases, why they are not even worth considering). It is my hope that after this post, those who have read it will understand my position and, more importantly, that that decision is personal. Here goes!

 

“You should get a dog, because it will make you so much more independent!”

Actually, the answer to that is yes and no, with an emphasis on “no”. It is very true that guide dogs can enhance independence by allowing for more fluid travel, particularly when unexpected obstacles (like construction or snowbanks) get in the way. While I’m fumbling around with my cane, the guide dog handler next to me has already found her way around the obstacle and is skipping along, happy as can be. It’s also worth noting that many guide dogs are trained to find certain objects like garbage cans, empty seats, counters, and doors. This is very handy when you’re navigating a somewhat unfamiliar area and you want to do so with some grace. So, does a guide dog make you somewhat more independent by default? A little, yes. Do I need that particular independence? Not so far. As it stands, I don’t venture into many unfamiliar areas on my own, simply because there hasn’t yet been any need to. I also don’t typically have trouble finding doors or empty seats, so what little independence a guide dog would give me wouldn’t really be worth having another living creature accompany me everywhere I go for the next decade or so. I suppose one could argue that a guide dog would make my travel more graceful to watch, but I can’t say I care much about that particular perk.

 

“You should get a dog, because you’d always have companionship!”

Yes, people have actually given me this one, and it’s not just a fluke; I get this all the time. I figured I’d get this one out of the way early, because it will set the stage for some similar arguments. First of all, keep in mind that guide dogs aren’t just puppydogs with a few months of training and a fancy harness. These dogs are trained rigorously for years; this training costs thousands of dollars, and takes time, patience, effort, and skill. You could be on a waiting list for years, while they try to find you a suitable match. Even when your match is found, there is no guarantee that you and your dog (called a “team”) will be successful. Sometimes, temperaments don’t mesh, and you need to keep looking. Furthermore, once you receive your new teammate, you must spend the next months (or even years) training together. Every day is an exercise, bringing with it new challenges and opportunities. It’s a joy, but it’s also a ton of work. So, all this in mind, do you still think I should get a guide dog…for the companionship? If I want companionship, I’ll get a goldfish.

 

“You should get a dog, because you’ll get so much positive attention!”

Excuse me, what?

Yes, I understand that people are drawn to service dog handlers. Well, they’re drawn to the dogs themselves, and the handlers just happen to be there. I have even seen examples of blind people being mistaken for each other because they both have dogs; this proves that people often see the dog long before they see the person, assuming they see the person at all. Yes, people will come over and ask you what your dog’s name is, and want to pet him, and coo over how adorable he is. Yes, people will probably think about talking to you on the bus because instead of a weird stick thing, you have a cute little puppy for them to gush over. And, yes: walking around with a cane usually gets me either ignored or asked whether I need help. I rarely get “oooh how lovely! You have a cane!”, for obvious reasons. All I’ll say to that is, if people will only give me their courtesy and attention if I have a cute doggy with me, I don’t want their attention at all.

 

“You should get a dog, because then you’d have protection in scary neighbourhoods!”

I struggle with this one, because it’s usually put forth by people who know me, care about me, and want me to be safe. I grew up in a very rural area, and moving to the city at seventeen put some of my family on edge. I think they assumed I’d be walking the dark streets of downtown Edmonton wearing “target!” on my forehead. While it’s true that I fit most of the requirements for a vulnerable citizen (very long hair, small build, disabled, female—need I say more?), I don’t find myself in constant danger. Certainly, having a protective dog that will growl menacingly every time a suspicious person comes near would be reassuring, but would it really be worth being responsible for a dog 24/7—one that I don’t even need or want—just so I can feel safe in the dark scary night? Nuh uh.

 

“You should get a dog, because then you’d never get lost!”

Oh, how very, very misguided this person must have been. Guide dogs do tend to memorize routes the more you navigate them, but you still have to know where you’re going. A dog is not a GPS: you can’t tell her where you want to go and have her pull you along. Dogs can’t tell you which bus to get onto or even where that bus is. All they can do is ensure that you don’t bump into anything or stray into traffic while you find your destination. True, they will eventually know exactly how to get to work, school, and other frequent destinations, but otherwise they are relying on you, the team leader, to give them instructions. Guide dog handlers still get lost; they still have to memorize routes; they still have to know where they’re going and how to get there. A guide dog is not an easy way out.

 

“You should get a dog, because you love animals!”

I do love animals. You know those people who lose their minds as soon as something cute and fluffy is nearby? That’s me. I’m the one on my knees, cooing, making a total fool of myself because I’m already too lovestruck to keep my composure. I grew up with dogs and cats, and I get very, very lonely for my animals sometimes. That being said, not wanting a guide dog does not automatically mean I don’t like animals. Some have even insinuated that choosing the cane means I simply don’t want to take care of another living creature that isn’t me. This couldn’t be farther from the truth: I’m ridiculously maternal at times, and once I can have pets again they will be very spoiled indeed. Once again, we come back to cost-benefit analysis. Is it worth getting a highly-trained service dog just because he’s an animal and I’d adore him? Absolutely not. You should get a service dog because you want one; because your lifestyle is conducive to having one; because you require the added independence; because you really want fluid travel; because you hate the cane and love traveling with a guide. You should not get a service dog because “it’s sooooo cute!”. That would be terribly irresponsible, no?

 

“You should get a dog, because mature, independent blind people all have dogs!”

This one is admittedly rare, but I’ve definitely heard it, even from people who knew almost nothing about blindness in general. I think the misconception is that blind children start off with the cane, become very skillful travelers, then immediately graduate to a guide dog as soon as possible. The cane is treated like a set of training wheels, if you will, designed only to get you used to traveling. Once that’s done, you can get a dog and be a “real” blind person. This, of course, is total BS. I know many, many capable blind travelers who only use canes; I even know some who had a dog for awhile and switched back to the cane because it suited their needs better. Aside from the fact that the notion of “good” versus “bad” or “fake” versus “real” blind people is hardly worth anyone’s consideration, no one knows my travel needs better than I do, full stop. This has been a recurring theme on this blog, and there’s a reason for that: at some point, people must accept that when it comes to my disability—my individual disability—I know better than anyone. That’s not an effort to be arrogant or dismissive; it’s just truth.

 

Let me state once again that I understand why people encourage me to get a dog. They are well-intentioned people who want me to be safe, happy, and capable. What they don’t realize, of course, is that their definitions of same may be different from my own. I don’t intend to offend or alienate anyone with this post; what I want is to help my sighted readers understand that blind people know themselves best. I’m always open to new ideas, and I’m by no means an island. Still, if I’ve considered your opinion carefully, and still find it lacking, please don’t push. It will fall on deaf (ha ha) ears.

My Eyes Are Broken…But I’m Not

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I can’t count the times people have discussed a cure for blindness as though it were a life-saving miracle. They treat it like the one thing in the world that would fix me—make me into a normal, functional, and ultimately happy human being. If I dare to question this idea, I’m immediately dismissed because “…well, if you knew what it was like, you’d change your mind, trust me.”. The problem with this argument is that it only represents one perspective: to a sighted person, seeing is the most essential thing in the world, and they are incapable of imagining life without it. Therefore, sighted people assume that my life must be a dark, terrifying, lonely place full of uncertainty and suffering. Gregg, who has been totally blind from birth, observes that, for many sighted people, losing their sight is almost akin to losing their life—a kind of death, so to speak. They rely upon it to the extent that going without it seems horrifying beyond words.

 

And yet, people lose their sight all the time, and most of them go on to live full, happy lives. Certainly it’s difficult at first; the adjustments that must be made are impossible to quantify. Still, they make it work, and many of them find their existences fulfilling enough, even without their sight.

 

Imagine, then, how a person who has never seen must feel. Having never relied upon sight for any aspect of their daily living, a world without it is perfectly natural and, for some at least, even desirable. To return to Gregg’s perspective for a moment:

 

I define the world by the things I can hear, taste, smell and touch, and in almost thirty-one years I’ve learned that there are many details found in these four senses that people with good vision often miss or ignore. I wouldn’t ever want to give that up for purely aesthetic reasons…

 

I can say that, in my own experience, there are many subtle details sighted people never appreciate, because sight is such a dominant, all-consuming sense. It is, as I like to refer to it, the greediest sense humans possess. I notice, for instance, the smell of fresh ice at a hockey game, while everyone else is busy exclaiming over the sport. I love the smooth feel of a loonie in my hand (it’s my favourite coin) while most people only notice the inscriptions on it. I can hear my surroundings with such precision that I hardly need more than echoes and a few landmarks to get around. While none of these things diminish the value of sight, they do mean that life in darkness isn’t so colourless as you might assume.

 

When I try to explain this to the average sighted person, they can hardly contain themselves, so exasperated and incredulous are they: “Butt…what about sunsets! Or the faces of the ones you love! Or…like…photographs! Wouldn’t you love to see all those things? Aren’t you curious? Don’t you care?”. The short answer is, sort of. To quote my good friend Alicia, also blind from birth, “I’m certainly curious about colours, and sunsets, and cats, and what people look like…” but she goes on to say that “I don’t live in hope, or even think about a cure all that much.”. This holds true for me, as well. There is no denying that it would be very, very cool to be able to see all those wonderful things I’ve been vicariously appreciating all my life, but I don’t find myself with a passionate desire to lay eyes on them, either. It feels like a perk more than a necessity, and I certainly don’t live my every waking moment hoping for a cure. Particularly for those who have been blind from birth, it’s pretty tough to miss what you’ve never had.

 

Now, one cannot have a nuanced discussion about cures for blindness without conceding that being sighted makes life considerably easier. If ever I become frustrated with my lack of sight, it is because of practical problems, like wishing I could drive myself somewhere instead of calling a cab or trying to figure out bus routes (or worse, bumming a ride). When I drop my keys and spend five minutes groping for them, I dearly wish I could just look down and find them instantly. The employment perks don’t hurt, either; as I’ve said in previous posts, the blind are chronically unemployed, and even when we do find jobs, we have to work extra hard to prove that we’re worthy of them. All that being said, civilization has evolved to the point where we can live reasonably independent lives, and most of the things we can’t do by default can be accomplished with the help of technology. It’s not as though we live in a wasteland with no connection to the outside world, and no meaningful place in it. It can be argued (and often is) that someone who willingly refuses a cure because they’re happy with their lot is a drain on resources. Why should the public help such a person when they have chosen this life for themselves?

 

This argument leads me to the crux of the matter: a cure is not a perfect solution. It’s comforting to think of it as a Hollywood-style magic moment where the patient opens their eyes, looks around, and becomes overwhelmed with the beauty and wonder of the world at large. This might be difficult for a sighted person to imagine, but humour me: try to picture (pardon the pun) what it would be like to suddenly gain an entirely new sense halfway through your life. All the feedback your brain is receiving is new to you, and you have no idea how to process it. If you’ve ever watched those viral videos in which deaf people are given cochlear implants, you’ll notice that the moment they begin to hear, they burst into tears. These tears aren’t necessarily those of joy; they are, more likely, brought on by being intensely overwhelmed. It is not as though a newly sighted person could look at the nurse beside them and think ‘okay, that’s a human dressed in scrubs’. They would have no concept of colour, shape, visual context, or even light and shadow; it’s all so new, and totally foreign. As CrazyMusician and Gregg have both mentioned to me, the rehabilitation process for a newly-sighted individual could take months or even years. They would essentially have to relearn how to do every little task that they have previously done without the use of their eyes. Even if the rehabilitation went smoothly, the mental and physical exhaustion brought on by processing so much information would be potentially debilitating, at least initially. This isn’t even taking into account the invasive and risky procedures a cure for blindness would require. Fiddling with detached retinas and faulty optic nerves is no mean feat. Since few have actually undergone such procedures, it’s impossible to say how successful a cure would really be. If you’re curious about what it’s like for someone with partial vision to be given enhanced vision, even for a short time, read this excellent post by Leona Emberson. While she enjoyed her experience with her electronically enhanced eyes, she went back to her regular vision rather gladly. For those who’ve lost their sight later in life, a cure makes a lot of sense. For people like me, though, it’s risky at best.

Don’t get me wrong: I understand why sighted people push so hard for a cure, and seem so baffled when I tell them I’m not actively hoping for one. However, until you’ve walked a mile in my shoes, you can’t understand what my life is like, and cannot, therefore, make judgments about what would make mine better for me. Only I can make such judgments, and I’ve already made them. I remain open-minded, of course, and should a relatively low-risk cure come along one day, I may go for it. The point is that I don’t have to; I don’t have to submit to being “normalized” just for the sake of it. As Chris Swank so eloquently puts it, “I’m not broken, even if society thinks I am.”. There’s a great deal of difference between broken eyes and broken people.

My Blindy Senses Are Tingling!

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“So…your hearing must be, like, really really crazy good, right?”

“Actually, no, it’s just that I know how to use—“

“…and your sense of touch? It must be amazing!”

“Again, it’s just that I know—“

“…you must have, like, super senses!”

“No, really—“

“Wait, are you like Daredevil?”

“Noooo!”

 

If you’re blind (or if you have any other disability, for that matter) then you’ve heard this one before. If you’re sighted, you’ve probably wondered about it. Today, I shall make it my mission to dispel the myths once and for all. Tell your friends! Seriously! This is bigger than IOS 8, and you won’t even have to put up with a U2 album!

 

Let me start out by reassuring you that assuming we have heightened senses is both logical and not entirely false. There is evidence that the neurons normally responsible for helping us see would instead find other tasks to perform, since our bodies don’t much like wasting resources. There is also evidence that the visual cortex—so much larger than those devoted to our other senses—might rewire itself after awhile, seeking more urgent work to do. So, to expect that we might have better hearing or a more sensitive touch is not unreasonable. In fact, it may even be that the nerve endings in our fingertips become more sensitive the more we read braille; the fingers I use to do this are definitely more sensitive to fine detail than the fingers I don’t use much. So, do we have heightened senses? Maybe, but if so, the difference is not nearly as significant as some imagine it to be.

 

What we do have is a better understanding of how to use our senses, particularly hearing, touch, and smell. We can all hear echoes, but blind people are better at deciphering what those echoes can tell them about, say, where the nearest building is. We can all smell cafeteria food or coffee, but blind people will probably rely on this as a scent clue to help them locate a particular room. We can all feel bumps on a page, but blind people are particularly adept at figuring out just what those bumps mean without having to look at them first, as many sighted braille readers do. In other words, we don’t have “super senses”; we just know how to use what we have.

 

I’m usually very patient with people who think I can hear far better than they can; as I said, this is a fairly reasonable idea. I’m less patient with the more ridiculous assumptions people make, many of which border on the ludicrous. It’s gotten so bad that I have frequently joked about whether or not we can hear grass growing, paint drying, or the whispering of souls who’ve gone from this world. In fact, Gregg tells me that he’d like to inform you that all paint dries in the key of B flat, just so you know.

 

I’d like to share a tidbit with you that will illustrate some of the more incredible ideas otherwise intelligent people have come up with over the years. A few months ago, Carly Marno, (a Persian cat breeder), was interviewing at a cat show. At one point, she was asked whether she had some kind of “special bond” with her cats because of her blindness. She asserted that she did not. While she does intensively handle all of her cats for obvious reasons—and knows them all very intimately because of it—she does not feel she has some kind of special connection with them just because she can’t see them. In fact, cats are highly visual creatures, which makes the likelihood of a special bond even smaller. Undeterred, the interviewer kept probing, insisting that she really must have some kind of special blindy superpower that linked her with her cats. Carly is very successful, so perhaps the interviewer was grasping at straws, trying to figure out how a blind person could do so well. Who knows? Either way, she refused to give in, and the interview was never published. Coincidence? You decide.

 

I think people desperately want to believe that we have super senses, because it explains how we can be so competent at times. People simply don’t understand how someone without sight could possibly get around as well as we often do, so they rationalize it by deciding that we’re just blessed with superpowers. Not so! Being as competent as we can be takes a lot of hard work, practice, and copious amounts of trial and error. I have even heard people put forth the idea that greats like Stevie Wonder and Ray Charles were as talented as they were because they had an advantage over sighted people. It couldn’t possibly be because they were, you know, particularly talented. No, people had to justify their success by claiming they had God-given superpowers to compensate. Sorry to say, but we blind people don’t get some kind of consolation prize in return for the loss of our sight. We aren’t given superpowers in other areas to make up for it. All we have is what everyone has, and a particular drive to make use of it. In fact, the idea that we would need superpowers to be successful at all is a bit insulting, no? Instead of assuming we can hear gaps in the sidewalk or, I dunno, smell a person’s emotions, ask us how we do the things we do. Most of us will be very happy to tell you.

 

I’ll draw this post to a close; I have to go and sort my laundry using only my sense of taste! Did you know that white clothing tastes very distinctly of lemongrass? It’s quite a treat!

 

Further reading:

Below are a few articles about the link between blindness and heightened or altered senses. The last link is a blog post by CrazyMusician, which further explains how hearing can help us navigate, and what can happen if our hearing is impaired for any reason. You should also visit Carly’s cattery:  She has cat pictures! Everybody loves cat pictures!

http://www.scientificamerican.com/article/superpowers-for-the-blind-and-deaf/

http://www.sciencedaily.com/releases/2012/05/120508152002.htm

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC544930/

http://blindbeader.wordpress.com/2014/09/18/did-you-hear-that/

The Dreaded “Can’t” Word

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Before I get started today, I must first emphasize that this post is not intended as a poorly-disguised roast of a certain individual (who here remains nameless). The situation was unfortunate, and I have my own opinions about that as you’ll see, but this is not a roast. There are many who know a lot of details about this situation, including the professor’s name, the course she teaches, and the program she is involved in. While some of this may be guessed at, and while I am not bound by anything in particular, I ask those of you who have this information to keep it to yourselves. I discourage any spreading of information that isn’t already in this blog post. I don’t want unjustified backlash to hit this person, her program, or her institution.

Now that that’s out of the way … on we go!

The word disability implies that there will be some things a person will be unable to do if they have one. If you’re blind, being unable to do certain things goes with the territory; you get used to it early on, and maybe if you’re lucky you manage to prove a few people wrong along the way. In general, though, some things are going to be beyond us … and that’s okay. I’ll never be able to colour-coordinate my outfits; I’ll never pick out my own wedding dress (simply liking how it feels isn’t enough, sadly); I’ll never be able to be a photojournalist. (Okay, so I’m at peace with that last one.) And guess what? I’m fine with that.

 

What I’m not fine with is being told I’m unable to do something when I am, in fact, very able. This type of statement usually comes in two forms:

1. “You can’t do this at all, because you’re blind. Sorry.” Or,

2. “You can’t do *all* of this, so you shouldn’t do any, sorry.”.

First of all, unless we’re talking about the painfully obvious stuff (photojournalism, anyone?), no one is a better judge of what I’m capable of than I am. I know myself best, and as long as I know what I’m signing up for, I’m usually right. This goes for things I can’t do, as well: if I insist that such-and-such a task is absolutely impossible, it probably is.

 

Being told I can’t do something when it’s actually true is tough to hear, but I can deal with it. This is the hand I’ve been dealt, etc. etc. However, life isn’t always so kind. A few days ago, I was just beginning my third year in a university program I really, really love. I took this program with fairly specific goals in mind, and third year is when I get to realize some of these goals. I was very, very excited. And then …

 

I got an email right before the class I was looking forward to most; it was from the instructor teaching the class. I was expecting a “welcome to the class” sort of message, but that’s not quite what I got. In effect, the email informed me that the instructor was sure I would be partially, if not totally unable to do the work required for the course; she thought I had probably been ill-advised, and that I should consider alternative paths. After finishing the email, I swear I felt my whole world shift beneath me. It didn’t quite crumble, but it thought about doing so. I was instantly in tears. “There goes my future…” I thought to myself. The class was a core, required prerequisite to other classes I desperately wanted to take. I had paid for it. I had been accepted into the program, and promised that I’d be given  the chance to do as much as I possibly could to be on par with everyone else. And yet, here I was, being barred from one of the most important courses in the entire degree.  That would all have been devastating, but acceptable … assuming the instructor had been right. Sometimes, there are bits I simply can’t master, and that’s perfectly okay with me.

 

I understand where this instructor was coming from: she wasn’t sure how much time it would take to accommodate my needs on a regular basis. She wasn’t certain of how to go about teaching me differently than the other students. She was hesitant about having to mark me somewhat differently than the others. The list goes on. She was very polite, very gracious, and very sincere. I knew then (and know now) that she was not trying to be discriminatory, or malicious, or any of the other descriptors others have thrown at the situation since it got started. If I have her as an instructor in future, I will be very fortunate: she really knows  her stuff. About this, though, I think she might have been wrong.

 

First, I have since discovered that the course can be taught in very different ways: another professor at this same university teaches the entire class on computers, making it very accessible for a blind student. Second, I have discovered that the method this instructor was using was not so standard as to be the only viable way to go about things. I would still be employable, even if I was unable to do the work exactly the way her sighted students can. Deciding not to teach me at all, therefore, put her insistence on sticking to a certain method above my ability to do the work at all. Without boring you, suffice it to say that it came down not to my skills or abilities, but rather to the fact that I can’t use a pencil. That’s it. That’s all it really was, if you look at the big picture. Such a tiny, insignificant detail! And yet it was enough to keep me from pursuing my goals in this program.

 

I accepted everything she said with as much grace as I could. I agreed to audit the course (I’d still pay some tuition but get neither the credit nor the feedback) and went on my not-so-merry way. I thought then (and still think), that she was probably doing the best she could. Maybe I didn’t like the result, but I knew better than to take it personally. While it is my opinion that she should be prevented from doing this to future students unless it’s truly necessary, I do not and will not endorse any roasts, rants, or other negativity aimed at her personally. If you see any of this, know that I neither approve nor validate any of it. I have not included her name, so those of you who know it should please keep that information to yourselves. My quarrel is with the situation, not the individual herself. Let no more be said on that matter, in particular.

 

Here’s the thing, though: her refusal to think outside the box very nearly impacted my degree. I got lucky (another professor stepped up to the plate, brave soul), but others don’t get lucky. Others have professors who mark them down on purpose, trying to get them to fail out of the program. Others are denied entrance into a program on the basis of blindness or other physical disabilities for very flimsy reasons. Others are told that the only things they’ll ever be good for are basket-weaving and maybe some beadwork if they’re truly enterprising. Yes, people are actually told these things. Today. In 2014.

 

Because others are not so lucky, I feel obligated to speak for them. I am fortunate, but others were not, and are not, and will not be. People will be turned away, and set aside, and pushed out of where their dreams take them, all because of laziness, or stubbornness, or fear of progression, or lack of understanding, or any other sad excuse anyone is willing to name. I wasn’t turned away. I was able to go where I wanted to go, and found people more than willing to take the journey with me. Most importantly, I am being given the chance to find out whether that instructor was right or wrong. Maybe she is right, and maybe I’ll fall flat on my face in a heap of exhaustion two weeks into the course. Maybe. … But what if I don’t?

 

Ultimately, I was able to respond to  “you can’t”, and “you won’t”, with “I can”, and “I will”. Let’s help others do that, too. If you see any instances of discrimination, whether intended or unintended … whether well-meant or malicious … whether seemingly justifiable or blatantly ridiculous … say something. Please. The victim may feel that the discrimination is justified. They may feel bound by confidentiality agreements, or politics, or fear of retribution, or serious backlash. I myself was hesitant about speaking up, because I was afraid to damage my relationship with  the university, the program faculty, and anyone else who might want to weigh in on the situation. Most of all, I was afraid to endanger the tenuous relationship I could have with the instructor who turned me away. The last thing I want to face is difficulty in future because I advocated for myself.

If they can’t speak (and sometimes they just can’t), then who will? Sometimes, we can’t do things…but most of the time, we can. And we will.

Guest Post: Yes, I’m The One With The Dog

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Today, we’re in for a bit of a treat. CrazyMusician, a guide dog user, will be discussing common myths about guide dog travel; she will also share the turmoil and chaos of the “first year from hell”. Since (as should be obvious by now) I’m not a guide dog person, I wanted the perspective of someone who is living it right now. The post is wonderful, so without further ado, I’ll let her do the talking.

 

As of August 31, 2014, I will have been partnered with my guide dog, Jenny, for one full year.  It has been rewarding, exhausting, freeing, and emotionally

draining.  We have struggled to form a strong partnership through blizzards, her bad habits, my frustration, and changes in food, training methods, collars,

employment, and home furniture arrangement.

 

Since having a guide dog is in many ways a large shift from using a cane, and since many dog-lovers think that all blind people should have them, I would

like to dispel several myths regarding guide dogs, handlers, and the partnership.

 

1) “A guide dog will make your life easier.”

This is probably the most frustrating and simplistic viewpoint.  While in many ways Jenny has made my life SO much easier – guiding me around unexpected

obstacles, construction, finding curbs on the far side of insanely busy streets, saving me from buses and cars running lights – she has also complicated

my life.  Packing for a trip involves more preparation than I would normally use for myself – does she have enough food? When/where is a good time/place

to take her outside? Do I have her blanket/bowls/water/toys?  Also, my cane has never once run full-tilt toward my husband, bent down to pick up a dropped

sandwich off the ground, or decided that it would be fun to insanely wag its tail at that dog across the street while knowing full well that it is NOT

playtime, resulting in an unhappy puppy across the street barking at it.

All this having been said, the extra preparation, training, and correction are a price I am willing to pay for the independence Jenny offers me.  She has

run me home in a blizzard, saved me from the path of an oncoming bus, and protected me from weird creepy people by letting out a loud bark (not a move

I encourage, but she’s quite selective about it).

 

2) “All guide dogs are fully trained”

Nothing could be further from the truth!  Guide dogs receive the basic overarching training – working in traffic, socialization, food refusal, etc. – but

once the training class is over, the real crash course begins. It is up to the handler to maintain the dog’s training, as well as to teach the dog any

new things the handler would like the dog to do.

Several months after completing training, I was at a really low point with Jenny. She seemed incredibly distracted, walking me into things, scrounging

at anything and everything… I just didn’t know what to do.  Almost all my friends who had guide dogs were still on their first dog and had worked with

them for more than five years, and all of them told me that “their dog never did that.”  I was so discouraged because I thought there was something seriously

wrong with me or my dog.  Then I met someone who was on his third dog.  He asked how things were going with Jenny, and I was just so discouraged that I

told him everything, even uttering the words, “I am seriously thinking about sending her back.”

I remember his words clearly: “the first year is hell; she’s testing you to see what she can get away with.”  He also told me that my feelings of discouragement,

frustration, and even squelched hope were completely normal; I just had to be consistent and let her know what behaviors were acceptable and which ones

weren’t.  Even now, nearly six months later, I still tear up at the immense relief that I felt; there was nothing wrong with my dog or with me… and yes,

things have gotten loads better!

** A caveat here: if you are struggling with these feelings and your dog is doing things that are blatantly unsafe (guiding toward traffic, for example),

it is essential to consult your school for tips, pointers, and a followup visit if necessary.  Your perceived independence is not more valuable than your

very life.

 

3) (along these same lines) “Guide dogs don’t make mistakes”

Yes, they do!

One of the most helpful things my trainer told me was this: “Jenny is a DOG. She is smart, willing/able to learn, but at the end of the day, she is a DOG!”

Dogs will have bad days, just like people, be grumpy, disoriented, sleepy, etc.

It’s always funny when we’re out in public in an unfamiliar area, and I give Jenny directions. If she’s confused, she exhibits certain behaviors, so I

repeat the command.  I can’t tell you the number of times someone has asked, “still in training?” I’ve started to laugh and say “Always!” I liken it to

having children: They learn something, but occasionally they’ll forget and you have to teach them about telling the truth or sharing their toys all over

 

4) General catch-all: Questions/comments that drive me crazy!

A. “You have such a great companion!” – if I wanted a companion, I’d get a little dog that I can carry in my purse. Comments like these demean the partnership,

training and skill involved in the work Jenny does.

B. “Can I pet your dog?” – I am fairly lucky that I get asked this question, rather than having people just reach out and pet her.  As such, despite my

annoyance, I am always polite at this question and say something along the lines of “Thank you so much for asking.”  This reinforces the idea that asking

is OK, but reaching out and petting isn’t.

C. “What’s your dog’s name?” – I don’t give this out, period.

D. “Still in training?” – see point #3 above. I’ve got a friend who’s had her dog for 6 years and still gets asked this question.

 

I did not expect to love having a guide dog as much as I do. Even now, after a bad day, I remember all the awesome things that Jenny has done and will

do in the years to come.  Jenny will get up, do some insanely flexible “doggie yoga” pose, wag her tail; I will hold out the harness as she shoves her

head through it, tail still wagging, and we are off to conquer the world.