education

“Mommy, What’s Wrong With Her?”

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So there I am, walking along, just trying to finish my shopping and exit the crowded mall as soon as humanly possible. Suddenly, my animated discussion with a friend about soft vs. hard-bristled toothbrushes (my life is unbearably exciting) is interrupted by an inquisitive little voice: “Mommy, what’s wrong with her?” In my experience, parents and other caretakers have one of three reactions: fear and avoidance, uncertainty and discomfort, or tranquility and patience. I don’t think I need to tell you which one I prefer.

Avoidance And Fear

I encounter this often. Children tend to ask difficult questions, and adults are not all-knowing, even if they’d like to be. Children tend to assume that grownups have the answers to all their burning questions, and at a certain age, especially, they delight in asking “why.” The trouble is that a solid understanding of disability in general and blindness in specific is rarer than I’d like. Rather than trying to grapple with things they don’t understand (or worse, misunderstand), adults remove the source of the curiosity, hoping that “out of sight, out of mind” will apply. Probably it does. Of course, this solves nothing: the child remains uninformed, and the parent does as well. Nothing is gained, and plenty is lost, too. Mothers, especially, react more out of fear than avoidance, and that fear can be passed along to the child. The last thing I want is for anyone to be afraid of or disgusted by me. I dislike being a walking curiosity, but frightening people is far worse. I’m the furthest thing from frightening. Please don’t hide your children from me; I have no plans to eat them. No, I don’t bite. No, blindness is not contagious. No, my parents did not commit grievous sins, and no, I’m not the resultant punishment. And … no, I do not use the stick to hit people (feel free to substitute “set my dog on people I don’t like” here).

Uncertainty And Discomfort

Some parents don’t run the second they see me, but they’re still very uncomfortable with both my presence and the need to answer their children. If I’m lucky, they haltingly explain that my eyes don’t work; if I’m unlucky, they resort to furtive mutterings about God having made a mistake or something. As far as I know, most religions assume that God is perfect, so that one makes little sense even to most religious people. Inquiring minds won’t buy that explanation for long; I know mine didn’t. I sympathize with the inability to put esoteric concepts into words, but blindness is not an esoteric concept (Cue debate about whether the word “esoteric” is itself esoteric.) I carry a white cane, so unless the grownup in question genuinely doesn’t know what white canes symbolize (in which case they’re to be forgiven), it’s not difficult to describe me to a child: she’s blind. Her eyes are broken. Her eyes don’t work. Use whichever phrasing tickles your fancy, but it all amounts to the same thing. It is very possible—and necessary—to explain disability to a child. Children need to know that not all people are like them. It is so important that they learn about disability, especially in a positive or at least neutral sense. Parents often transfer their fear and/or intolerance of difference to their children, and that needs to be counteracted in whichever way suits. Most people don’t have a particular aversion to blindness, so it’s totally okay to tell a child about it. It’s not taboo, shameful, or scary, and it shouldn’t be uncomfortable. My hope is that it will become normal, easy, and comfortable for all involved. People need to be less afraid of disability. We’d all be better off for it. Personally, I see no reason to go into detail about low-vision versus totally blind etc. All of that will come with time; for now, it’s most important that the child has a rudimentary idea of what blindness is.

Tranquility And Patience

Sometimes, and only a very few times, adults respond in a calm, constructive way. Those who know something about blindness will offer patient explanations, employing frankness and respect. Others—and I love them for it—address me directly: “Excuse me, but do you mind talking to my child? She’s very curious and I want her to hear the right answer, not the one I’d come up with on my own.” I’m always so pleased with this latter response. It includes me in the conversation, rather than treating me as though I’m the object of your child’s curiosity; the mall isn’t the zoo and I’m not a giraffe. That response also takes courage: the grownup in question has to address me directly, and ask whether I’m willing to educate a stranger’s child. If a grownup is courteous and brave enough to ask this of me, I always oblige—and I do so with pleasure. Some blind people hate to educate. They resent the fact that they are treated like poster children for blindness and disability. They just want to go about their days without being bothered. I, however, will take being asked to educate a child over being treated like an object of fear, disgust, or condescension. When people address me politely, ask respectful questions, and allow me to enlighten them on whatever they’re curious about, I’m happy to educate all day long! If you do nothing else, please discourage your children from shrinking from me in fear. I’m human, too.

Braille Is Not Dead (So Stop Trying To Kill It)

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Note: As of January 2020, this post has been updated to correct some assumptions I no longer hold, describe new experiences I’ve had, and clarify a few points that have come up in the years since its original publication. I hope it is better and more useful for it.

I’ve heard the case against braille books, and it’s a compelling one. Braille books are bulky, because the braille alphabet is oversized compared to print letters. They aren’t terribly common, as the market for them is so small. They are expensive to produce, so most of us don’t own our own books. We usually end up borrowing them from special libraries and resource centres.
Braille is undeniably inconvenient. Throughout secondary school, my backpack weighed somewhere in the neighbourhood of 25 pounds, because it was crammed with volumes and volumes of braille. If I also had to carry my laptop case, braille notetaker, and/or my Perkins Brailler, I’d be carrying something like 40 pounds of equipment and books back and forth every day. That was a third of my body weight, and I am quite sure some of the neck and back issues I suffer from began with all those books.
Then, there’s the multiple volume problem: most braille textbooks and longer leisure reading books are too long to come in one volume. My first braille dictionary, a short one meant for children, was 25 volumes in length. My high school chemistry book, which included enormous tactile diagrams, was 53 volumes long. Each volume only contained the equivalent of 20 or so print pages, so I would sometimes run back and forth during class to fetch the next volume of braille (my books had their own storage room, true story). When I had chemistry or math homework, I’d have to carry several volumes of braille, instead of just two books like every other student. It was a logistical nightmare, especially when I’d miscalculate and bring the wrong volumes home with me. If you ask my parents, they’ll tell you about all the times I came home distraught, because I’d realized, too late, that I didn’t have the correct volumes with me. Oh, the tears I shed over braille books.
So, yes, I understand the case against braille, and I acknowledge that it’s not for everyone. Some blind people never master it, and others simply don’t like using it. Auditory learners, in particular, seem to do better with audio books and text-to-speech than braille, and that’s valid, too.
That being said, I’m not shy about my belief that braille needs to stick around, and cannot be replaced by audio technology.
People keep insisting that braille is dead. Irrelevant. Frivolous, even, given our digital landscape. With screen readers and other text-to-speech products, what do we need braille for? Blind bookworms, students, and professionals can just sit back, relax, and let their computers read to them. Who needs to have the actual text in front of them? Isn’t being read aloud to enough?
For me, and for many, many blind people, it’s nowhere near enough. It’s not enough, because we still deserve to read in the ways that best suit us. It’s not enough, because it’s still nice to be able to pick up a book (or, in some cases, to cuddle up with electronic braille). Most importantly of all, it’s not enough, because blind people, especially those who are deaf-blind, still need access to more than one literacy tool. They still need to learn to read just like everyone else.
Imagine how a sighted parent would react if, upon sending their child to school, the teachers decided that reading is optional, frivolous, irrelevant. Imagine the outrage if instead, teachers just read aloud to that child, not letting them see or understand how the alphabet works because it’s too much bother to teach them.
Now, imagine that the teachers then insisted on teaching that child to write, without letting them read. Sure, a child can be taught to type and never have to know how to write by hand, but learning to write when they cannot read would be a wee bit complicated, no? And wouldn’t learning to spell be far, far trickier? Would the average sighted child ever be subjected to this bizarre methodology, just for the sake of convenience or frugality or the idea that they don’t “need” to learn? Not likely.
Nearly everything I know about language I learned from reading. If you want to be a good writer, you have to watch other writers at work, and this necessitates a lot of reading. Yes, I can still learn by having my computer read a book aloud to me, and I’m not one to disparage audio books as “fake” reading. But I find that I don’t retain information quite as well just by listening. Not every blind person is an auditory learner, least of all me, so reading on my own is still a crucial skill, and I literally couldn’t do my editing work without braille. Spotting subtle punctuation errors and common misspellings that automated software won’t catch would be cumbersome if I relied on my ears, and would slow me down considerably.
Speaking of spelling, I’ve noticed that while bad spelling is by no means exclusive to blind people, we have to work harder than most sighted people, simply because without braille, we don’t interact with text the same way. If you hardly ever “see” the words on a page, you have to put in a lot more legwork to ensure you’re not missing things. It’s easier to be a good speller when you have the opportunity to memorize the words, and you can’t do that as easily without reading independently. While I am a decent speller, any word I picked up in a braille book is much easier for me to remember than a word I picked up by listening. These days, I do the majority of my “reading” by listening to audio books or text-to-speech software, so I have more difficulty spelling newer terms. Here are just a few of the pitfalls a lack of braille access has caused for many blind people I know:
• The Beatles becomes The Beetles
• Def Leppard becomes Deaf Leopard (logical, but still wrong!)
• Too, to, and two become hopelessly mixed up, even more than usual
• Names are commonly incorrect (Sarah vs. Sara) and names based on deliberate misspellings and wordplay are especially difficult
Unless we are diligent about checking the spelling of anything new, mistakes like these will keep cropping up in the blind community, and minor as it seems, it can be genuinely embarrassing for a lot of us.
Mindful of this, I find excuses to read braille as often as possible, both because I enjoy it and to keep my spelling skills up to par. Sighted people will almost always have the luxury of knowing how a thing is spelled the moment they read it. The only way for me to replicate that is to read a lot of braille and do a lot of googling.
“But Wait!” you say, “isn’t spelling sort of secondary to all the other aspects of literacy? With the ever-present Spellcheck, isn’t the ability to spell less valuable?” Maybe, though as a professional writer and editor I do know that Spellcheck won’t save you every time. Even if we discard spelling, though, grammar and general syntax still rely on the ability to read, and not everyone can pick that up just by listening. Braille gives you the opportunity to read aloud to yourself, which will help improve grammar and flow in your own writing. (Screen readers aren’t so natural-sounding as to read with a human’s sense of flow, and as I learned while preparing speaking notes for other people, screen readers don’t help you catch unintentional tongue-twisters!) If you’re not an auditory learner, learning a new language, or improving your mother tongue, is much easier if you can read directly to yourself.
So, no, braille is not for everyone, and braille proficiency is not, as I once believed, a non-negotiable ingredient for blind people’s literacy and professional success. But love it or hate it, braille is the only way in which blind people can learn to read in the same way sighted people do, and for people wired the way I am, it’s the optimal method for absorbing and retaining new information. Braille is inconvenient, and expensive, and problematic, yes. But it’s not redundant. It’s not pointless. It’s definitely not dead.
Please, stop trying to kill it.

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!