Month: June 2015

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.