blindness

“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.

It’s a Human Thing

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Over dinner with a dear cousin of mine, I was waxing pathetic about how much it grieves me that I can never slice vegetables in a straight line. My cucumbers and carrots end up being very fat on one side while dwindling to a mere ghost of themselves on the other. I was going on and on about how I can never get the angle right, and that blindness really gets in the way. I told her that I imagined there was some kind of mystical trick to it, because there’s no way that everyone was messing up the way I was.
“Meagan, that’s not a blindness thing. That’s a human thing. I can’t cut straight either.”
“Oh…really?”
“Really.”
“You have no idea how much better I feel right now.”

Sometimes, blind people hold themselves to much higher standards than sighted people do. I think it’s because expectations are tragically low: a blind person is lucky if their sighted family and friends think they’ll be able to feed themselves and hold down a job. These low expectations can force some of us to aim very high—even higher than the average sighted person might.

There is this drive to be totally independent (never mind that no one is entirely independent). Even sighted educators and consultants have fallen into this trap. They expect a blind person to go the extra mile to be an excellent student, a fantastic cook, an immaculate housekeeper, a highly successful employee … and on and on. As Leo once said, few sighted people aspire to or manage these things, especially in this age of convenience.

Sighted people aren’t perfect by default. They aren’t even particularly successful by default. Sighted people make many of the mistakes that blind people attribute to their failings as a blind person. Revelation after revelation has led me to the point where I’m not nearly as ashamed of my own struggles, because I now realize they’re a result of being human, not of being blind.

Some sighted people don’t eat neatly, while I generally do, depending on what I’m eating. Sighted people spill things, knock things over, and drop stuff; I rarely make messes, because I’m very careful not to “seem too blind.” Many sighted people don’t know the bus system, while I berate myself for not being familiar with its every component. So many sighted people aren’t great cooks, so now I don’t hate myself for being a mediocre one.

I look around at the students I’ve gotten to know, and I find that even the older ones aren’t as capable as I thought I had to be at, say, sixteen. If they can pop a bowl of soup in the microwave, deal with their leaning tower of dishes, and occasionally vacuum, they’re doing okay. I was taught to see that lifestyle as the lowest point you can ever experience. I thought that, if I wasn’t perfect, then I was being a bad blind person. I was exemplifying all those lowered expectations, while simultaneously failing to meet the much higher standards others had imposed upon me.

While in junior high, I struggled to complete an art-based science project on my own. I’m very creative, but not when it comes to using my hands. My idea of arts and crafts is to put random beads onto a piece of string. Maybe I’ll glue a feather and some seashells onto construction paper and call it a collage. I wasn’t an art person in any sense, and being blind didn’t help, of course. While I was struggling with this exercise, my EA came over to show me a gorgeous science project some blind girl at another school had made. The assumption, I suppose, was that if she could do it, I should be able to do it, too. You’d never ever say to a sighted student, “Someone in a completely different school made this. What’s wrong with you? Why can’t you make this, too? Why can’t you go the extra mile?” Yet, when it came to me, my inability to equal her work was attributed to laziness. I must be an underachiever, right?

I’ve written about why it’s a mistake to compare blind people on more than a superficial level. Having different strengths and weaknesses than another student is not a blindness thing, but a human thing.

Once a blind person grasps this, they can start living a more relaxed and contented lifestyle. Once educators and other professionals who work with us realize this, too, everybody will be happier for it.

Another dear cousin (my cousins are awesome, what can I say?) once gave me this advice:

Ultimately, the only person you have to live with all your life is you. The only person who will always be there is you. Therefore, the only person you have to please, in the long run anyway, is yourself. Live up to your standards, and nobody else’s.

Whether she knew it or not, that advice altered my thought processes and, by extension, my self-concept. It has, in short, changed my life. I hope it changes yours, too.

Clients, Not Customers: Charity, Politics, And The CNIB

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Author’s note: The following contains frank and potentially controversial material from several sources. To protect their privacy and the privacy of those they have worked with, no names are given. They have not explicitly asked for this, but I wish to shield everyone from unnecessary backlash.

I began this post as an attempt to dispel misconceptions surrounding CNIB, RNIB, and similar organizations. Things took a turn, though, when I received a flood of responses documenting issues people had with the CNIB, in particular. The sheer volume of feedback I received convinced me that I needed to write a post about it. Someone needs to speak up, because at present, blind people have no voice in Canada outside the CNIB, and there’s nothing democratic about that.

If you’re Canadian, you probably believe that the CNIB is the go-to when it comes to virtually anything blindness-related. Some go so far as to believe that blind people spend the bulk of our time there (we do not) and that we could not possibly get on without them (which many of us could). People even believe, as K told me, that the CNIB finds jobs for us (which they certainly do not) and that they essentially look after us in every way (which they definitely don’t). It’s true that they provide many essential services, especially for people who are newly-blind or who are born without sight and need some support. I still require O and M (orientation and mobility) instruction from time to time, and I do love their massive library of braille and talking books. Still, I wouldn’t say that the CNIB is in an ideal state. I also wouldn’t say that the structure and operations of the organization are serving the community as well as they could be.

Let me first say that I do appreciate the CNIB very much. They’ve done a lot for me, personally, and they’ve also done a lot for blind people across Canada. While I worked for them, I met wonderful people. I was treated with dignity and kindness. I was given challenging, rewarding work. I had a great time. But there were darker parts—parts I can’t talk about here for confidentiality reasons. However, other members of the blind community remain unfettered, and they wanted me to tell their side of the story. So, here goes.

I mentioned that the very structure of the CNIB is problematic. As K pointed out, the CNIB’s charitable status forces them to solicit funding in whatever ways they can. This means pulling relentlessly on heartstrings, even if it misleads people; even if it makes blind people seem helpless; even if it portrays us as dependent and in need of hand-holding and coddling. The CNIB puts out astonishingly condescending ads like this one (shoutout to the actors—they’re both great people). Check out this one from the RNIB, which obtains funding by convincing the sighted population that blind people’s lives are dark, gloomy, and hopeless without the RNIB’s intervention. I mean…come on! They even have sad cellos! Who on earth couldn’t give money to an organization that uses sad cellos?
The CNIB, like many charities, is always in a somewhat precarious position, so there is a chronic lack of staff, an inability to pay the staff they do have (including benefits), and ongoing doubt as to where they’ll be next year. I even recall the CNIB making threats about discontinuing their library services if they did not receive more funding. The CNIB has a loud voice all right … but who is speaking?

The CNIB is lobbying, and lobbying hard. I’ve written about their attempts to persuade governments to fund rehabilitation services just as they do for all other disabled people. If you get into a car accident and are paralyzed, you will be given rehabilitation and physiotherapy until you gain as much independence as possible. You are, in theory, supported through the entire process. If you get into an accident and are blinded? They send you home and, if you’re lucky, they point you towards the CNIB. It’s a sad state of affairs, and the CNIB is trying to change that. That’s noble, in itself, but again, we run into the issue of advocacy: the CNIB is not the mouthpiece of the blind; it is the mouthpiece of itself. R goes so far as to state that politics and lobbying are more important to the CNIB than actually helping its own clients.

This brings me to another of K’s excellent points: we are not customers or members of the CNIB, but clients. This puts us in the position of receiving services and being spoken for. We do not advocate; they advocate for us. We do not educate; they educate for us. While there are many blind people employed by CNIB, the organization is not democratically structured so that the general blind community can have a say. We can scream as loud as we please, but at the end of the day, the public will listen to the CNIB before they’ll listen to us. The CNIB has name-recognition and a century of service on its side; who are we to disagree with them? To call them out? To claim that they may not be the perfect solution after all?

Oh, right: we’re charity cases. Every service we receive is given to us for free. It puts us in a disempowering position. Because we don’t pay for what we receive (and most of us couldn’t afford it even if we did want to pay), we are not given a voice. Many would consider me ungrateful if, after receiving a free service, I complained about its quality. Even if I have good ideas, they’re not particularly welcome, and most of the clients I’ve spoken to feel the same sense of futility. We can’t complain, because it’s free. We can’t progress, because it’s charity. We’re stuck. Well and truly stuck. And the front line staff? Those generally dedicated people who take on massive caseloads to help us? They are overworked and underpaid. They are spread too thin or left with little to do. They get to deal with all the discontent, and get none of the reward. In many ways, being a front line staff member at CNIB appears to be a thankless job.

If you’re in a position, like R was, where you receive horrible service from a particular branch of CNIB, you are out of options unless you move. She had difficulty becoming a client, because forms either failed to be sent/received, or mysteriously disappeared altogether. Once she became a client, she had to fight to receive services at all. She left dozens of phone calls. She went up the chain to try to get someone to listen to her. When she did receive service, she claims it was perfunctory and next to useless. When she tried to advocate for herself, she was dismissed. When she tried to take control of her own situation, she was told there was only one right way to do things, and she’d have to suck it up if she wanted help. R had difficulty with an O and M instructor—with whom many other clients had issues—because that instructor seemed to have an agenda of sorts. R knew her own vision and health best, but this instructor seemed to think they knew better than R did. Eventually, R gave up completely and stopped asking the CNIB for help. These days, she teaches herself how to use assistive technology. She relies on help from other blind people which, thankfully, has been forthcoming. While her experiences are certainly unusual, they are not unique. I have heard these stories over and over, and I’ve even had a taste of them myself. While my experiences with the CNIB have been mostly positive, I have occasionally encountered staff members who played favourites, for example. One client had no trouble getting service for something trivial, while another client could not get vital service for love or money. One has to wonder why this is so widespread. Why is it so prevalent and pervasive? And what on earth do we do about it, when we have no say in how the organization is run?

L brings up the unfortunate reputation the CNIB has gained over the years. She says, “I would take a job with the CNIB if I had to, but it is definitely a last resort. I don’t want my name associated with them.” This is partly because sighted people assume that if CNIB employs a blind person, it must be busywork or pity work. Far from it. Blind employees work just as hard as sighted ones, and several hold executive positions. Yet I, too, feel a little squirmy when I tell people where I’ve worked. I just know they’re judging me, and I know it isn’t merited.

So, what’s our grand solution? One would hope that, with such an outpouring of emotion, the blind community would have come up with something. We find ourselves stumped, though. Perhaps we should have a system more like America’s, where governments pay for rehab services, and consumer organizations like the NFB and ACB act as legitimate mouthpieces for blind people. Canada does have one advocacy organization by blind people for blind people, but it’s very low-profile. Many of us had never even heard of it!

The point is, there is no grand solution. The CNIB has so much going for it, but it also has massive issues that could not be fixed without significant restructuring. It relies on public funding, which is capricious and just a little too scarce at times. We do need them, as things stand anyway, but they seem to have forgotten us. Many of us are lucky: adult blind people with solid independent living skills don’t need the CNIB very often, if at all. We are not living lives of darkness and suffering. Yes, there are profound struggles, but there is plenty of light there, too. The question is, can it be better?

We will see what the coming years bring with them. Perhaps governments really will commit to funding rehab services for us, though with substantial cuts to health care, that doesn’t seem likely. Until then, we’ll just have to carry on and hope things get better. It’s bleak, and dismal, and woefully inadequate, but there it is. Still, the blind community is robust, innovative, and spirited. We’ll figure it out. The only question is, when?

Yes, I Have “Bad Blind Days”

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People complain about bad hair days. They complain about bad workdays. They complain about Monday’s very existence. I complain about all those, too. Frequently. One might even say, insufferably.

There is another day I feel less comfortable complaining about: the Bad Blink Day. Some days, everything that can go wrong does go wrong, in the context of blindness at least. This morning, for example, I was trying to prop my cane against a door. It fell no fewer than four times before I accepted defeat and folded it up. At that moment, I thought “I should have gotten a dog!” We all know how I feel about getting a service dog. I remember a day two summers ago, when I was learning the route to work and back, in an unfamiliar neighbourhood, with absolutely no one to go along with me. Everything went pear-shaped from start to finish…

The inauspicious beginning: I was sorting out some new outfits to wear to work, and found that I’d forgotten which skirt went with which shirt. I was panicking, because I apparently lack the ability to prioritize calamities. I eventually threw on something I thought might be okay, and off I went to catch the bus. The bus, of course, was late, and the driver very grumpy. I used my GPS the entire time, trying to make sure I didn’t miss any stops. (I’ve since learned to pester the driver, however annoyed they may become.) During the work day, things went reasonably well, but for a few accessibility hiccups I dealt with quickly. Well, okay, so I was on the phone with tech support for an hour, but otherwise it was great! And then …

I caught my first bus home, and transferred at a busy station. It was pouring, and we were under a tornado warning, I believe. I got onto the second bus, and when the driver reached the approximate location of my stop, she said “I’ll just drop you off over here.” The chosen spot left me disoriented, since I didn’t really know my way around yet. I wandered for ages through rain and wind. Normally rain doesn’t bother me much, but this rain was unusually cold, for July anyway, and it was really coming down. I was hopelessly lost, though I knew I was only a few blocks from my destination. The GPS was no help. My phone was nearly dead, and in any case my fingers were so wet and cold that I couldn’t get the screen to work (this was before I had Siri). I knew that, had I been sighted, this day would have gone a lot differently.

The dreary end: I ended up standing in some stranger’s yard, hiding under a tree, bawling my eyes out and getting soaked. The stranger was kind, and drove me home (yes, I got into a stranger’s car—sue me). I got in the door (wringing out my skirt as I did so), went upstairs to my room, and curled in a ball to cry. That day, like many days, I was so done with being blind.

Most of my “bad blind days” aren’t nearly as dramatic as all that. Usually it’s little things, like getting somewhat lost, calling cabs to go to an unfamiliar place, fighting stupid stereotypes, and generally getting people to treat me normally. We all have them. So why don’t I like talking about them?

I’m very free with blind friends. They’ve all gone through what I have, so we can share our frustrations without inviting negative perceptions, seeming whiny, or killing people’s buzz. Yet I have difficulty talking to sighted people about days like this. Maybe it’s because I feel ashamed: after all, blindness isn’t so bad. Many people have it far worse, so what am I grumbling about? Maybe it’s because I feel very slightly unsafe—as though anything I say will be twisted out of context. I don’t want one bad day to make people think my life is always confusing and frustrating. Maybe it’s because I’m a generally upbeat person, and I only feel safe venting to a select few.

I’ve recently decided to change this. I was chatting with my fiancé Gregg about social media. He was pointing out that people hardly ever post negative things there, and when they do, it’s usually to gain sympathy (we’ve all done it, don’t shake your head) or shed positive light in a subtle way. Oh, look how brave I am, fighting adversity! Oh, look how desperately busy I am; I can hardly keep up (but I actually can, see?).

What you don’t see, he said, is people posting genuinely negative things that have happened to them, without any intention of garnering sympathy or making themselves look good in crafty ways. “Maybe,” he continued, “posting more negative, less self-congratulatory things will help everyone feel better about the bad stuff that happens to them.” I decided he had a point. Research has shown that people often feel depressed as they scroll through Facebook, because all they see are the good times everyone else is having. All they see are the successes. All they see, in essence, is how well everyone else is doing, and how badly they are doing in comparison. It never occurs to people that what you see on Facebook is carefully chosen, and that it doesn’t represent the whole. I’ve met people who had glittery, perky, and plucky Facebook lives. I thought they must be the happiest people in the world, with a million friends and so many successes. These are some of the unhappiest people I know, by the way; all you have to do is ask them how they’re really doing. I’ve often heard the following: “I have a thousand Facebook friends and no one to talk to.”

So, on my Facebook, Twitter, and the blog, I’ll endeavor to share the foibles, failures, and trials without trying to be inspirational. I’m not trying to uplift others. I’m not trying to make everyone feel sorry for me. And I am definitely not trying to flatter myself in any way. What I want is to get people—disabled and otherwise—to feel comfortable talking about the bad stuff; the embarrassing stuff; the frustrating stuff. Share the things that aren’t inspirational, or uplifting, or flattering. Share the things that make you squirm just a little.

I’m not suggesting you roam into “too much information” territory, and I’m certainly not suggesting you post content that a possible employer might find unsavory. I’m not saying you should share stories about your latest drunken mishaps. Share the little stuff—the stuff we all go through but don’t like to talk about.

“But Meagan!” you say, “won’t that turn Facebook into a sea of negativity?” Nope, it really won’t. The less time we waste comparing our lives to someone else’s–without even seeing the whole picture–the more time we can spend supporting each other, keeping up with friends, and generally having a good time.

You can share the good things, too. Share your success in sports, music, art, and the workplace. Share things that make you proud. Complain bitterly about the impersonal—traffic, the government, the state of kids today. Just remember to share the personal stuff, too; if you can share the personal good, feel free to share the personal bad, too.

FAQ: Improving the Accessibility of Social Media Posts

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Last week, I published a short article listing the most common inaccessible posts sighted users tend to make. While it was not meant to instruct, I did intend to shed light and raise a little awareness. I refrained from advising sighted people to alter their posting habits in any way; I did not want to give the impression that I believe they are somehow responsible for making any and all material accessible.

Once the post had been published, though, several sighted people expressed gratitude, and were eager to make minor adjustments to their social media practices for the benefit of their blind friends and followers. Immensely pleased by all the enthusiasm, I agreed to write a brief Q & A, covering the most basic aspects of social media accessibility. And here it is.

Note: I’m using Facebook as a starting point, though many of the same general rules apply on other social media platforms.

Q: What should I do when uploading a photo?
A: If you upload a picture of your own, there will be no caption or description by default. A screen reader user will hear a string of meaningless numbers and letters (this is how photos are rendered) and that’s about it. They will know you posted it, but unless the accompanying comments provide context, it is impossible for a blind person to interact with your post. Most blind users will be perfectly happy with even the briefest description. For example, if you post a picture of your cat, you need only mention its name. Your blind friends don’t need to know all the details; if they are truly curious, they can contact you for more information.

Q: What should I do when sharing a photo?
A: When sharing a photo from someone else’s page, you may get lucky: there might already be a description or caption attached. Blind users can often interact with shared photos, because either the comments or the description provide enough context. If, however, the photo stands alone, you may have to add a short description, which is very easy to do, especially on Facebook where space is not at such a premium.

Q: What should I do when sharing screenshots and text embedded in images?
A: Many sighted people don’t realize that text embedded within images is completely inaccessible to screen reader users. The reader interprets the image as a graphic, and cannot recognize the actual text inside it. In this case, you may actually have to write out the contents in plain text so your blind friends can understand it. If it is a particularly long post, (or, as in some cases, the post is a lengthy article constructed entirely of images) it may be wiser to wait for a blind person to request information. Don’t spend ages writing everything out before you know whether your efforts are necessary.

Q: What should I do when posting from Instagram, Pinterest, or other largely-visual platforms?
A: Again, you must consider what you’re posting before making a decision. If you’re posting from Instagram, and it’s just a picture of what you had for breakfast, write a quick, plain text description like, “Look at my scrumptious chocolate muffin!” Blind users will understand the gist; they don’t necessarily require lavish descriptions of the muffin’s various attributes. Keep in mind, though, that most blind people understand that Instagram and similar platforms are primarily intended for sighted people. As such, it is not a sin to post visual items from those sites without taking the time to describe every single photo. There will be certain things we just can’t access properly, and most of us are totally fine with it. It’s not life or death, after all.

Q: Can you give me some general advice that will cover everything?
A: Yes. The best general rule is this: perform a cost-benefit analysis. If what you are sharing is important, taking steps to make it accessible is greatly appreciated. If you run a business or promotional page, you are obligated to make your content as accessible as possible. I recently admonished the CNIB for posting on Facebook without including a description of the photo they’d uploaded!
If you’re just posting on your private page, though, don’t worry too much. Blind people may skip past four out of five visual posts without being particularly bothered about what they’re missing. If you’re worried, extend an invitation to them, encouraging them to contact you when they want more information. That way, you never waste your time adapting things no one will benefit from.

Your time is valuable. Thank you for the minor adjustments you make for us. They don’t go unnoticed.

10 Bits Of Facebook I’ll Never Quite Get

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These days, it’s rare to see actual statuses being posted to Facebook and Twitter. When I scroll through my newsfeed, the majority of content looks like this: “so-and-so shared a photo”, followed by a string of incomprehensible numbers and letters (which is how a screen reader interprets an image). Much of Facebook is totally visual now, so my level of interaction is lower than I’d like. Here are just some of the aspects of the network that I’ll never be able to grasp.

1. Pinterest—pictures galore, and I can’t appreciate a single one.
2. Photo sharing—people do this to excess on Facebook, and of course I can rarely figure out what’s going on.
3. Selfies—it doesn’t seem like I’m missing out, mind you.
4. Articles that use images—many, many times, an interesting article is unreadable for me because the text is embedded within images. Sadface.
5. Instagram—that whole platform, besides the occasional video, is a no-blindy zone (which makes sense, of course, but it still sucks).
6. Cute, fluffy creatures—every now and then I get to listen to a den of kittens purring away, but generally I miss out on the kittens and puppies that dominate my news feed.
7. Graphic design and visual art—I have friends who are tattoo artists and graphic designers, and they use Facebook as a promotion tool. I can’t applaud them for their work. More sadfaces.
8. Dialogue-free videos—and there are so many of these! I get to hear pretty music, but most of the time I haven’t a clue what any of it’s about.
9. Viral nonsense—people do love to share videos and articles on sites like Upworthy, but often the article is just a bunch of images. Other times, the video player is either inaccessible, or missing altogether.
10. Virtually anything on Tumblr—again, people love to link to Tumblr content on Facebook, but more often than not, I just can’t access it. I don’t know if I’m just unlucky, but I have never, ever had success with Tumblr.

So, if you notice that I never “like” your posts, or comment on your content, please understand that it’s probably because I don’t get most of it. Never fear: if I’ve added you on Facebook, I like you, I promise.

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.

“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.

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.