ambassadorship and representation

Pleasing The Unpleasable: Say Goodbye To The Middle Ground

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If you’ve spent a lot of time on social media—particularly Twitter and Facebook—you might have noticed a diversity spectrum. At one end, (let’s call it right, for giggles) we have people who are passionately opposed to diversity. At the far left, we have people who are equally passionate about encouraging diversity. There’s a whole lot of middle ground, but the opposite ends are usually warring with each other, and those in the centre are subjected to the excesses of both sides.

I’m not sure where exactly I’d place myself on this spectrum—though certainly more left than right—but I think it’s difficult to self-assess these things. It’s nearly impossible to examine my own behavior with an objective lens and decide where I belong. Even diverse and oppressed populations find ourselves unsure of where we stand, especially when we get caught in the intense crossfire. Objectivity itself is disturbingly scarce, in an age when we put less and less stock in fairytales, harmful superstitions (adopt the black cats, guys, pretty please!) and even extremist ideologies. There are a few publications that conduct ethical, verifiable research intended to challenge our cherished, long-held beliefs about the world. They are too few, though, and in a world of black-and-white thinking and instinctive loyalty to one’s beliefs, their voices are not nearly loud enough.

Now, the righthand side of the spectrum is a very real threat. These are the people—usually powerful majorities, but not always—dismissing diverse authors because they’re not “good” writers. They look down on women in comedy because, I kid you not,women aren’t funny. They despise disabled people because we are a drain on the system, robbing them of hard-earned pennies and indirectly taking food from their children’s mouths. (They conveniently refuse to educate themselves; many of us aren’t on benefits at all.) They’re usually the ones promising same-sex couples they’re bound for hell, calling black people thugs, and branding indigenous populations lazy drunks. Their claims sometimes stem from personal, unfortunate experience; even so, their attitudes are obviously detrimental to society. I think many of us can agree with that, at the very least. But …

It would be a mistake to consider the far left pure, just, and incorruptible. The Social Justice Warriors (as the right so affectionately calls them) are genuinely trying to fight the good fight as they see it. Overtaken by their intense fervor, though, they seem to neglect those in the centre of things. They are fighting for what they perceive as justice, but many of them are unwilling to entertain the idea of grey areas, full stop. They don’t appear to acknowledge (or care) that the tactics they so despise from the far right are often the ones they adopt themselves. Take it from someone who is left but not all the way left: more often than not, it’s safer to avoid getting involved, because you’ll feel ineffectual and exhausted in short order. It’s gotten so bad that more than once, I’ve taken a “mental health break” from social media, or at least from controversy. While I have been guilty of this overenthusiastic dog piling, (and may be again), I recognize that it’s largely ineffective and stressful for everyone involved.

If you examine the far left’s strategies more closely, you’ll begin to spot the multitude of contradictions:
• They hate to see diverse populations silenced by the right, but are constantly telling everyone to #SitTheFuckDown, including fellow diverse individuals.
• They occasionally consider evangelism deplorable, yet they preach every bit as loudly and proudly as the religious right. (I personally have no issue with preaching on either side, but it’s still glaring hypocrisy.)
• They accuse the right of being too exclusive, yet will ignore anyone who doesn’t toe the party line. (Try entering a conversation about race or disability if you’re white and/or able-bodied, even when you support the cause and honestly want to know how you can help.)
• They are forever telling majorities, (especially straight, able-bodied white men) to shut up, then accusing them of failing to do enough for the cause. (Either you want them involved or you don’t. Pick one.)
• They criticize majority artists for failing to include diverse characters in their books and movies (which they should, really), but then turn around and berate them for cultural appropriation. This is a very real and very important concept, but it is ill-defined and confusing. (This can be a powerful source of anxiety for writers who want to do the right thing but feel as though they can’t win either way.)

There are numerous voices for marginalized groups who either encourage majorities to get involved, (This book is an excellent example) or at the very least encourage them to boost the voices of diverse populations. These instructions are relatively easy to follow, and they allow white, straight, able-bodied, Cis-gendered males to take part without routinely saying the wrong thing or supporting the wrong people. Others, however, are simply unpleasable: they want you as an ally, but only if you say what they tell you to, when they tell you to. They want you to help, but then dismiss all your efforts because they’re insufficient. They refuse to guide your attempts, then spit on you for making a mistake.

This is not to say that all allies are perfect little angels just waiting to be told what to do, of course not. Many people who want to be allies have suspect motives, condescending perspectives, and narrow minds. Take, for example, the plethora of articles about how “inspirational” people with disabilities are. The gooey rhetoric of the able-bodied can be dangerous as well as irritating, trust me. In my experience at least, you’ll attract more flies with honey than with vinegar: if you calmly and kindly explain why this inspiration porn is not okay, people are generally willing to listen and take note. There will always be those who think they know best, but quite a few people out there are all too willing to learn, so long as we can tell them how best to do so. We can’t blame everybody for stumbling a bit along the way; none of us is immune to a stumble here and there. We need to be more compassionate, we really do.

Sadder still, the unpleasable, comparatively rare though they are, often drive people away from the message they’re trying to send. The medium is the message, so if you convey important ideas via abusive rants on Facebook or angry tweet storms on Twitter, your words will be lost in the mayhem. If you barge into a stranger’s Twitter mentions or Facebook posts specifically to deliver personal attacks and invective, don’t expect them to absorb your message with delight and say “Yes! I shall change immediately.” I recognize the need for anger, and passion, and even temporary preference for justice over mercy. There are many on the far right who do grievous social and even physical harm, and that’s something worth fighting against. So, yes: be angry. Be passionate and stand up for those who cannot do so for themselves. Be unafraid to express what you think is right; after all, I’ve been doing that here for over a year now. Be dedicated in the wish to educate and advocate. I’ll be right behind you.

Take care, though, that you do not push away the very people whom you claim to represent. If I, a disabled person, am bombarded by a barrage of social justice warriors because I dare to have a slightly more moderate opinion than they do, I’ll be tempted to abandon their cause altogether. The quickest way to divide people is to pit them against each other, and forming a “diversity club” is one effective way to do it. Silencing fellow diverse people because they don’t follow your exact specifications is going to damage your credibility and distort your message.

Those who silence others do not represent me. Those who gang up on vulnerable people are not my peers. Those who refuse to accept and guide allies do not help my cause. Those who shame, degrade, and dismiss other diverse populations for the sake of their own agendas are not my friends. The unpleasable are not my allies. If your only goal is to shut everyone up so your own voice is the only one that matters, then go your way. Don’t expect me to follow you.

The Woman Who Chose To Go Blind (And Why We Shouldn’t Hate Her)

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Jewel Shuping’s story went viral when it was revealed that she convinced a psychologist to pour drain cleaner in her eyes and blind her. Naturally, people freaked out.

Wow. Jewel Shupingis a idiot

— #FlyEaglesFly(@One_Liner_Tyler) October 2, 2015

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Quite understandably, many people thought it was a hoax, but Jewel herself told her story, in an attempt to help others with what is called Body Identity Integrity Disorder. The disorder is similar to gender dysphoria in that the patient feels his/her body is not as it should be. In this case, Jewel, and others like her, genuinely feel that a part of their bodies—often a limb but in this case an organ—does not belong and they will feel incomplete until they get rid of it. For many, this results in amputations, but in Jewel’s case, she just needed to damage her eyes enough to feel blind. Jewel has never been happier.

This is unthinkable to just about everyone—indeed, the disorder is very rare—and this story has inspired shock and outrage from sighted and blind alike. Sighted people cannot imagine going blind anyway (as I’ve previously discussed, it is one of their worst fears) and even blind people think she’s a bit nuts. After all, most of us would not necessarily choose this life, even though we may not welcome a cure. Entertaining the idea of deliberately disabling myself makes me shudder, and my first reaction to this story was anger. Being blind is hard enough without sighted people actively choosing the “lifestyle”. Further, what will sighted people think of us? The blind community suffers from ambassadorship syndrome, even if we try to combat that instinct, and I wondered what implications Jewel’s actions might mean for the rest of us? It’s very difficult to give people the right idea about what blindness is like, and viral anomalies like this one further distort the picture.

Of course, sensational news can lead one down many paths, some of them a bit ridiculous. I began imagining what would happen if more and more people did this sort of thing. Would people lose respect and compassion for disabled people in general? Would everyone I meet become suspicious, wondering whether I was a “real” blind person or just someone who poured drain cleaner in her eyes on purpose? Would we need to undergo rigorous testing to make sure we’re not voluntarily disabled during screening for benefits, accommodations, and other special services? I eventually managed to derail the hysteria in my head, which left me with the hefty question: how should I feel about Jewel?

Unsurprisingly, Jewel and her actions have sparked much controversy for two reasons. One is that she claims to suffer from Body Identity Integrity Disorder—as mentioned above—so the question is whether or not she is mentally ill or simply different. Disorders are not generally viewed positively, but trans people are steadily gaining social acceptance around the world. They can be said to have a disorder as well, yet most forward-thinking liberals would not tolerate bigotry directed at them, nor would they support the dismissal of the disorder as “mental illness” that needs to be “cured”. So, does Jewel need “treatment”? Is she “ill”? Or, like trans individuals, is she merely feeling an all-consuming desire to modify her body in a way that has felt right for her since she was a child? One might argue (and indeed I have) that trans people are different because they do not seek to disable themselves. Changing your gender, while involving much mutilation and modification of body parts that are in perfect working order, does not have the same result as someone wishing to invite disability. Disability makes life much, much harder. It’s harder to get a job. It’s harder to gain social acceptance. It’s harder to support yourself and others, particularly if disability accommodations require costly technology and services. Being a trans man or woman is difficult whether they transition successfully or not, so they may as well go ahead and transition, hoping that they will one day “pass”. Blinding yourself, however, is a whole other matter. Still, the temptation to make the comparison is strong. Jewel even decompressed in the same ways trans people do. Using a cane and reading braille were ways of decompressing so that she could feel “normal”, at least some of the time. So, is BIID similar enough to Gender Dysphoria that we should treat the two equally? Is Jewel no crazier than Caitlyn Jenner?

The other bit of controversy deals with objections and fears from the blind community itself. While some of Jewel’s blind friends have been incredibly supportive—one even calling her “brave”—there has been a lot of hatred directed toward her as well. What if she makes the rest of us struggle more than we already do? We don’t exactly need more negativity associated with us, right? Then there is the very thorny (and legitimate) issue of accommodation: should someone who has deliberately disabled themselves be entitled to benefits, workplace accommodations, assistive technology grants and so on? Should someone who has purposefully blinded herself receive help for a disability she actually chose and embraced? Certainly, Jewel has access to at least some of this at the moment, and despite her contentment with her new lot, she still occasionally complains about some of the things blind people have been grumbling about for decades. Thanks to the paratransit, I will miss my first class. They are going to arrive until 1030. My first class is at 10. I am very angry.z

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Does she have any right to complain about Paratransit when she chose a life that would force her to rely on it? Does she have any right to seek help that the rest of us need whether we want to or not? While I may not feel as angry as I did, I can certainly see why this angle, in particular, infuriates other blind people. We work so hard to be on a level with everyone else, even when we are perfectly content with ourselves, and it seems almost insulting to think that someone would handicap themselves and then have the gall to complain about it. It’s easy to get good and mad about that. But …

Is there any point in being angry? Is there any reason to hate her? Is there any good that can come from dismissing her as crazy? She doesn’t feel crazy. She feels very happy, and psychologists and neurologists have acknowledged that what she is feeling is also felt by others. Even if we choose to frame her condition as mental illness, we still have to respect the fact that she has cautioned others with BIID, asking them to seek treatment before resorting to drastic measures as she did. She went so far as to admit that it really is a disorder, and that while she is happy with her choice, it is worth seeking alternative treatment and, if people still decide to go through with it, they should do so using much safer channels. Wanting to modify your body in drastic ways may not be objectively crazy, but getting a psychologist to put drops of drain cleaner in your eyes might be a little crazy.

My post raises far more questions than answers, I know. I worry: I worry that Jewel will continue to be the target of intense bigotry, hate, and derision. I worry that other people suffering from BIID will be dismissed, or shunned, or silenced. I worry that people will begin to see Gender Dysphoria as crazy again, and direct even more bigotry, ignorance, and hatred towards trans people. In short, I worry about more hate, more anger, and more myopia. Will people want to view this issue from multiple angles, or will they simply refuse to think about the matter long enough to see a grey area? I can just imagine all the sighted people taking one look at this headline and picturing men in white coats hauling Jewel away. I can also see blind people taking one look at this and feeling powerful anger and contempt.

I hope good can come of this. Jewel is happy, and other people with BIID have the potential to be happy—or at least happier. Jewel’s message of caution and alternative treatment is just as important as her own choice. She’s not trying to lead a movement here. We’re not likely to see a huge wave of BIID sufferers coming out of the woodwork, dismantling the whole disability accommodations system as we know it. However, it is very dangerous to treat this like a happily-ever-after scenario. This has so many complicated facets, and I know there will be a huge outcry from the trans community if they feel delegitimized by BIID. We need clear heads, and open minds, and rigorous research. We need objectivity. This is not a good time for black-and-white thinking. Do me a favour, and spend five minutes looking at this from every angle. Then, tell me what you see.

Accommodation with a Side of Guilt, Please

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This evening, I went out to dinner with some friends. I ordered a dish I’ve eaten many times (a salad) only to find that they’ve begun presenting it in a new way: the dressing was in a small cup on the edge of the platter, rather than atop the food as it usually is. I froze, slightly embarrassed. I’ve always had trouble dressing my salad if it’s in a cup. Squeeze bottles? No problem. These give me a certain degree of control. Cups, however, are a different story. (Disclaimer: some blind people have no issue with these whatsoever.) I was just about to ask someone at my table to help when our extremely-attentive server materialized at my elbow:
“Do you want me to take this back and dress it for you?”
“Um…no, it’s okay…it’s just a bit awkward—“
“I totally understand. Don’t worry about it. I’ll be right back.”
Away went my plate. The server appeared several minutes later, saying “Here’s your salad. We have a special rule here where each time food is sent back for any reason, we have to actually make a new dish. So, we just made you a new salad and dressed it for you.”
I was stunned. I had just inadvertently wasted an entire plate of food so that someone could put dressing on top of my salad for me? Forget being slightly embarrassed: I was mortified and, I confess, a little ashamed. While the server reassured me that it was all okay, I silently asked the powers that be to disappear me immediately. They did not oblige.

I’m used to being “accommodated”. Indeed, I often expect it: when I enroll in university classes, each of my instructors is given an accommodation letter, which describes the accommodations I’ll need to participate fully in the classroom. (If I sound like a handbook, that’s because I wrote one—no, really!) I also expect workplaces to make (reasonable) accommodations to the work environment. This is something I’ve been encouraged to view as normal and acceptable. As is typical for me, I have felt heaps of unnecessary guilt over accommodations, even when they are deemed “reasonable”. Once, in ninth grade, my science teacher got together with a few others on staff and made me a periodic table, so I wouldn’t have to use the rather inadequate one in my textbook. My junior high Industrial Arts teacher went out of his way to make sure I could try out all the same equipment everyone else could. He even positioned the end of a nail gun while I fired, showing a remarkable lack of concern for his fingers. (If you’re reading this, I want to thank you. I’ll never forget that one.)

When people go above and beyond the call of duty for me, I feel grateful (healthy) and horribly guilty (unhealthy). Instead of simply thanking people and getting on with things, I waste time and emotional resources worrying about how undeserving or inconvenient or high-maintenance I’m being. While the person who is helping me is busy doing me a favour, I’m busy coming up with all the reasons I shouldn’t be accepting it. Even when I do accept it, as I did with that salad, the shame and humiliation will plague me for days. Yes, you read that correctly: days. This particular incident was so awkward that I’m amazed I didn’t start crying right there at the table; goodness knows I wanted to.

As far as the server was concerned, she was helping a gal out, no more no less. I have no idea what the kitchen staff thought, though I wouldn’t be surprised if they were about a dozen different kinds of exasperated. As far as I was concerned, I’d manage to waste food, fill my server’s time with running back and forth (in a very busy restaurant, I might add) and make a fool of myself all in about five minutes. I’m cringing as I write this, but the more I think about it, the more I realize it needs to be discussed. There are probably a lot of people out there who have felt how I’m feeling right now.

I’m trying to be okay with being accommodated. I’m trying to be at peace with accepting help, and depending on others, and even letting people do me favours now and then. Could I have dressed the damn thing myself? Of course. Would it have been less messy and awkward to have someone else do it? Absolutely. Did I force anyone to do it for me? No. Am I still going to feel awful about it for days to come? Yup.

But should I feel guilty? Most people seem to think I shouldn’t. Accommodations are there for a reason, and in many cases they are universal enough to be made into policy and/or law. But just because it’s not in a handbook or policy statement doesn’t mean it can’t and shouldn’t be done. While imposing unreasonable accommodations on people at work, school, and elsewhere isn’t going to further the cause, it shouldn’t mean that any random act of kindness ought to be rejected.

Should we make a habit of letting people do things for us, especially when we’re capable of doing them ourselves? If you know me at all, then you know I’d never suggest such a thing. However, this does mean that we should be comfortable with accepting what people want to give us now and then. If it’s not a sin to let someone carry your heavy bag, or hold open a door, or grab you a drink (all things sighted people let others do for them on a regular basis) then why not let someone offer kindness if they really, really want to?

I’m learning, guys. I’m learning. But for now…I think I’ll go and have that cry.

If a Picture’s Worth More Than a Thousand Words…You’re Using the Wrong Words

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“Eye contact is way more intimate than words will ever be.” – Faraaz Kazi

Eye contact carries staggering weight with just about everyone. You can say “I love you,” “I hate you,” and “I’m so bored—let’s get out of here!” with a simple look. Indeed, if you don’t make eye contact with the person you’re talking to, it’s not only abnormal—it’s rude, in some cultures anyway.

Upon meeting a good friend for the first time, I was, of course, unable to make eye contact with her. The best I could do was turn my face toward her, and look as alert and interested as I could without using my eyes. I don’t have any control whatsoever over my eye movements; my eyes are always looking everywhere and nowhere all at once. During this particular meeting, I was seated with my folded cane beside me. It wasn’t in full view, so my friend had no idea I was blind. She later confided that she had thought I must have been very shy. “I was so frustrated,” she said, “because you wouldn’t look at me. I was like, ‘Hey, look over here, damn it!’ and wondering what you were thinking. It was really bugging me.”

I’d always known that eye contact was important, but I’d never had it put to me quite that way. It was vaguely disconcerting, as though I’d committed some grievous social faux pas without knowing it. I started to wonder how many others had assumed I was shy, evasive, or impolite. How many times would my meaning have been better conveyed through a simple look? How often were my words, even when carefully chosen, insufficient?

I’ve learned to live with the fact that I’ll never achieve eye contact, but it still irks me, especially since I’m so cognizant of how it could improve my communication skills. I am a professional communicator, after all. And, as always, it’s the little things that get to me. Let’s say a stranger comes into the elevator with me, and I’m too shy to make small talk. It would be nice to simply make eye contact and smile. I use the same facial expressions as everyone else, of course, but I don’t have as much control over them as I’d like. To this day, I’ve never really mastered the fake smile; I just end up looking as though I’m about to commit unspeakable evil. That, or I look painfully awkward. I’ve even been told I suffer from resting bitch face, even though I’m a relatively cheerful person. How nice it would be to show friendliness without having to chatter pointlessly about the weather! (Then again, weather in Alberta is often a legitimate conversation piece.)

I won’t pretend the big things don’t matter, though, even if they don’t nag at me quite as often. I have been judged harshly in numerous musical competitions because I didn’t make eye contact with the audience. Apparently, this is the only meaningful way to connect emotionally with the crowd. The jury’s out on that one. I even had one judge approach me after I’d won second place, saying, “If you’d just looked at us or something, you’d have won.” Gee, thanks. Even when adjudicators are fully aware of my eye condition, they’ll still mark me down, partly because they aren’t conscious of how biased they are in favour of people who can make eye contact when necessary. This would happen even during classical competitions, where visual expressiveness should be less significant than in, say, musical theatre. Oddly enough, I’m far better at theatre than I ever was at classical performance, but I digress.

There’s more to it, of course. My loved ones all know how I feel about them, and I know how they feel about me, too. Nevertheless, I’ve always felt a twinge when someone says “You should see how he was looking at you!” or “I don’t think she appreciated what you were saying to her. She was giving you ‘the look’.” I am told that I have very expressive eyes, so I’m sure I give myself away a lot. But, more than control over my own eyes, I want knowledge of what others are saying with theirs. People don’t always bother to verbalize how they’re feeling. There have been times when someone was giving me a furious glare, an encouraging smile, or a warning glance…and of course it all went whooshing over my head. It’s true that people should probably remember to tell me what they’re thinking rather than staring at me, but it’s so engrained that most people forget.

I take issue with the idea that a look is far, far more expressive than a word, though. I have heard exceptional tenderness and pure venom in words, and I can hardly imagine something more intimate and expressive than that. I recognize that I don’t know what I’m missing, to some extent, so my understanding is very limited. However, people frequently underestimate the power of words and auditory cues because they simply don’t value them as highly. It’s much easier to look at someone than it is to search for the words that will express the same feeling. So, people naturally opt for the easier, quicker route. I would like to think that the words I say matter at least as much as the look you’re giving me. I don’t think I could tolerate a reality where my words don’t matter because I can’t look at you while I’m saying them.
Is it possible that looks are only more effective than words because they are convenient? A look, after all, is free of language barriers. It means the same to most anyone in the world. (Of course, there are exceptions: direct eye contact in Japan means something different than direct eye contact in America.) It is also much harder to mess up a look than a word. It’s easier to say the wrong thing than smile in the wrong way.

Perhaps it is not the fault of the words at all. Perhaps words are inadequate for the simple reason that the average person isn’t used to using them. Perhaps—dare I say it—people have chosen to value looks over words. If I’m right, and it is a choice, then maybe it would be possible to turn things around? Would it be possible to convince people that words are powerful tools—at least as powerful as eye contact? Maybe, maybe not. At this point, I just don’t know. But it’s an intriguing thought, isn’t it?

Maybe a picture is worth more than a thousand words … because you’re using the wrong words.

“I’m Not Prejudiced! Some of My Best Friends are Blind!”

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“I’m not racist! Some of my best friends are black!”
“I’m not bigoted! Some of my best friends are LGBT!”

This century-old defence is generally dismissed, especially on the internet. People try to claim that, due to the presence of minorities in their circle of friends, they are above reproach. They can’t possibly be prejudiced. Would a racist have black friends? Would a bigot have gay friends? The general consensus is yes! a thousand times yes! Your best friends don’t shield you from your biases, even if they are willing to ignore or even embrace them.

Several months ago, someone I respect very much (let’s call her Alison) made a stereotypical blind joke: “Shouldn’t ads for blind people be on the radio instead of TV?” or something to that effect. I took no issue with the joke’s complete lack of comedic value; your mileage may vary, perhaps? What I did take issue with was the inherent (and silly) stereotyping in the joke. A lot of people think we don’t enjoy TV or movies simply because we can’t see. Apparently, the dialogue is some trivial, peripheral aspect of the whole experience. As helpful as described video can be, it is still very possible for us to enjoy TV shows (and cringe at the ads). Her joke played on that ridiculous stereotype, and she made it very publicly, reaching a large number of people all over the internet.

I, in my infinite foolishness, wrote to her:
“You do realize that blind people can still watch TV, yeah?”
“Um, hello? Of course. Ever heard of a joke?”
“Well, yes…it’s just that this one plays on some very pervasive stereotypes that we spend much of our time fighting against. Please please try not to perpetuate it.”

After this exchange, some friend of hers chimed in: “Wow, chill, bitch! Some of Alison’s best friends are blind!”

Ah, here we go…the ultimate trap: if my blind friend says it’s okay, then it is. No question. This is immutable, right?

Noooooo! Not even close. Not for one second.

I found this whole conversation distinctly odd. Alison is a well-known and very vocal feminist who supports the rights of minorities. She despises stereotypical jokes about women, LGBT people, and ethnic minorities. She devotes much of her time to dispelling the myths and encouraging truth and inclusiveness. All wonderful stuff, and I like her a great deal.

Why, then, does all this stop applying when dealing with blind people? Suddenly, all the ethics and inclusiveness and open-mindedness disappear. Suddenly, for no discernible reason, it is acceptable to make ridiculous, condescending jokes about us that, if made about a gay or black or transgender person, would be reviled for the bigotry that they are.

Jokes among your friends are different from jokes made in public. I play along with blind jokes made at my personal expense with enthusiasm. Blind people, in fact, are very good at laughing at ourselves. I’ve always written my blog with my sense of humour at the forefront, so it’s not the jokes I have a problem with, not really. Alison’s joke is pretty harmless, at least on the surface.

What I have a problem with is the defence itself. It’s such an empty, futile argument. It appears to lay a steel trap, but is really just so much shrinking from all responsibility. Maybe you have a blind friend who thinks stereotypical jokes are hilarious, and that’s okay. Feel free to make them whenever you’d like … around and about them, that is. Just because your blind friend is okay with something, does not mean that the rest of us are okay with it. Furthermore, it doesn’t mean that it’s okay, period.

There will be a lot of people who assume, judging by this post, that I’m an exceptionally uptight person. I’m not. I am almost too tolerant at times—something my friends never tire of telling me. My issue isn’t with the individuals, like Alison, who tell these jokes and/or excuse behaviour that would be bigotry if directed at any other group. My issue is with the people who allow that argument to stand unchallenged. I could have six hundred gay friends, and they could all actively encourage me to tell prejudicial jokes or otherwise behave in a bigoted manner towards them. That doesn’t change the facts, though: most people, LGBT or otherwise, would find that behaviour generally offensive.

Maybe your blind friend is okay with bad TV jokes. Maybe she thinks it’s funny when you pet her service dog while its in harness. Maybe he erupts into side-splitting mirth when you steal his cane and hide it. (God, I hope I never meet your friend.) None of that matters in the grand scheme. If you tried any of that in the wider world, people would denounce it, and rightly so.

If your best friends are allowing you to go out there and act like a bigot without at least warning you … get some new friends.

“May I Pray For You?”

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“Excuse me …”
“Yes?”
“What’s your name?”
“Meagan…any reason you ask?”
“Yes. Meagan, would it be okay if I prayed for you?”
“Why…”
“Well, I’d like to ask Jesus if He might help you with your eyes.”
“Ah.”

This one. It happens to most of us at one time or another. I admit that I’ve heard about it plenty of times, but didn’t experience it myself until I was eighteen or so. I hear all kinds of derisive comments about the situation, even from religious blind people. They hate pity as much as I do, and they consider the prayers insulting, or at least misguided.

I tend to react differently, and I must say that my approach is very unpopular. No, I’m not wild about the idea of people asking God to fix me. I wager that He would cure me (or not) with or without entreaties from strangers. I fight the good fight where negative stereotypes are concerned—you all know this, dearest readers—and I discourage pity as often as possible. And yet …

There is something so earnest and genuine about these offers of prayer. The requests might be misguided, yes. The desire to see us cured is misplaced, certainly. In many cases, we’re at peace with our lives as they are, and a cure is potentially frightening to many of us. So no, I don’t actively encourage anyone, stranger or otherwise, to pray for or even wish for a cure.

On the very few occasions when someone goes out of their way to ask if they can pray for me, I do my best to respond with grace. I respect and appreciate their openhearted compassion, even if I wish there wasn’t a need for it in the first place. I know in my heart that they have the purest intentions, at least most of the time. And, while I generally take issue with the “good intentions” card, there are, in my mind at least, exceptions. Will my life change in any way if a stranger goes home and prays for me? I suspect not. Will it hurt me, though? I don’t see how. Will I gain anything by berating them for even asking? No. Will I further my own cause by being harsh with them? Definitely not.

I’m at a point now where I decline these offers of prayer as graciously as I can. I spend too much time battling the idea that we’re just waiting for someone—anyone—to “make the blind to see” as it is. Still … I have to celebrate the goodwill of these people. Society is apathetic and individualistic to such a degree that these small kindnesses, however I might feel about them, remain special to me.

If you must pray, then pray for me, by all means. I ask, though, that you pray for my well-being. Pray that my various issues remain manageable. Pray that I continue to cross paths with fortune.

Don’t pray for the blind girl. Pray for the girl.

“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.