Author: Meagan H. Houle

Don’t Be Fooled: Love Hasn’t Won…Yet

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On June 26, 2015, the US Supreme Court ruled that same-sex couples now have the right to marry in all US states. Many took to Facebook, Twitter, and other social networks to celebrate that the US had finally achieved marriage equality. Not everyone was ready to celebrate just yet, though. Alicia, who is blind, is intimately acquainted with the marriage inequality plaguing less visible minorities in the United States. While everyone is rejoicing that love has won, Alicia finds herself unable to keep quiet. While she and her fiancé (also blind) do not receive the hatred and scorn that same-sex couples do, they still suffer discrimination which, while much quieter, is just as meaningful. According to Alicia, we have a long way to go before #LoveWins. This is her story, so I’ll let her tell it.

When Meagan asked me to guest-post on her blog, I was honored. This issue is near and dear to my heart, but I hope to write out my thoughts without turning this post into a rant.
While my friends on social media were celebrating, I found myself furious. Marriage equality is not yet a reality. I know this because I cannot marry the man I love … and I don’t foresee a day when that will change.
The United States has marriage penalty laws that will affect anyone who is receiving government benefits. These include SSI (Supplemental Security Income), SSDAC (Social Security Disabled Adult Child), and, perhaps most importantly, Medicaid. These programs are income-based and, once a couple marries, that income is considered “joint”. Therefore, if you and/or your partner are receiving any of these benefits, marriage may put you over the ridiculously low income limit. This assumes that married couples have a higher joint income than they would if they were single but, as is the case with many disabled couples, this is far from guaranteed. Even with joint income, most of these couples are still unable to cover needs such as shelter, food, and medical care (especially the latter) without assistance. Given that a very high percentage of people living with disabilities is unable to work, these penalty laws prevent many disabled couples from getting married, despite their commitment to and desire for marriage. Social Security is sneaky about this. Program criteria states that if a couple is “holding out to the community as married”, that couple can be considered married for Social Security purposes, and lose their benefits. Unsuspecting couples–who accidentally find themselves within Social Security’s criteria for “holding out”—could lose their benefits, leaving them with very little recourse, if any.
My fiancé (Mark) and I both receive Social Security benefits and health coverage through Medicaid. If we were legally married, our cash benefits would be cut dramatically if not entirely, and we would both certainly lose our medical coverage. I have several physical health issues that would make my situation precarious. Even worse, my partner has cancer requiring aggressive expensive treatment. There is no way we could afford this if he lost his medical coverage, which forces us to choose between marriage and his cancer treatments.
I hasten to point out that these laws do not only affect people with disabilities. They unfairly penalize the elderly (often low-income) who are only able to cover their increasing health needs with programs like Medicaid. A friend told me a story about her Grandmother, who had lost her first husband. A year later, this elderly woman met a man she wished to marry. Marriage wasn’t an option, however, because they would both have lost their medical and Social Security Benefits. The choice: stay unmarried, or forfeit the funds that would cover essential medical and living expenses. The solution, whether for a young disabled couple, or an elderly couple with no disability at all, is to cohabitate, and make it abundantly clear to everyone that they are either roommates living together for economic reasons, or nothing more than boyfriend and girlfriend. I, like many others, cringe at having to refer to someone I love more than my own life with the same term a high school couple dating for a week would use for one another, but it is what we must do to secure our living and medical expenses.
When I first started discussing this issue on social media several months ago, I was surprised by the reactions I got, particularly from those within the disabled community. Many asked me why I was so upset: after all, Mark and I were married in our own hearts. Why did we need a silly little piece of paper? Weren’t our own feelings toward each other good enough? The answer is no. The even more infuriating thing is that many of the people giving us these platitudes were the same ones that were telling LGBT couples to keep fighting the good fight, and not give up until they were granted equal rights. No one told these couples that “it’s just a piece of paper.” So, why does this attitude change for couples like Mark and Me?
In the early days of the fight for gay marriage, the concept of Civil Unions was created, which gave same-sex couples the right to be at a partner’s bedside, privy to their medical information, and other rights of marriage without making it legal. For the most part, the LGBT community refused to accept this. For many that I talked with about this issue, it was the system’s attempt to placate them: “we’ll give you half of what you want, but not your heart’s deep desire.” Given that, even when civil unions were offered, same-sex couples continued fighting for the fundamental right that is legal marriage, and were encouraged to do so. Yet there is not even an option for civil unions for those receiving benefits like SSI, sSDAC, and Medicaid. In fact, we can lose these benefits by simply appearing to be married—no piece of paper necessary. Not only do we not get our heart’s desire, but we must go to the other extreme and make sure we don’t join our lives in any way beyond that of roommates.
People (some of them disabled), have come up with another argument concerning why they think I am wrong about this country still not having marriage equality for all. Their take is that prior to the Supreme Court ruling, a same sex couple simply could not get married, no matter how much they wanted to. It was just not an option. They argue that couples such as Mark and I could go down to the courthouse today, apply for a marriage license, and get married by a Justice of the Peace in record time. These people claim I have no argument, because Mark and I are simply choosing not to marry, rather than being unable to. on the surface that logic would make sense. But what happens to us after that marriage ceremony in the courthouse? Do we go off on a honeymoon and begin our lives as happily married people? No. Letters would begin arriving in the mail, announcing that the Social Security benefits which provide for our basic necessities for daily living have been reduced or cut off altogether. Next we get letters that announce that coverage for Mark’s life-saving cancer treatment has been taken away. What do we do then? We are not the only ones in this situation, and many people who wish to marry face disabilities and health difficulties even more severe than ours. Marriage or cancer treatments…not a real choice. For Couples where one or both partners is even more seriously disabled, this is not a choice, either. Marriage, or life-sustaining medical equipment, skilled in-home care, medical procedures….not a real choice. Marriage or food on your table, shelter over your head…this does not sound like a real choice to me.
My friend Amy likened this issue to the poll tax laws that many states had from the late 1800’s all the way up to 1966. Strictly speaking, blacks, whites, women, and Native Americans all had the right to vote….so long as they paid the required poll tax, and (in some states), passed a required literacy exam that showed they were educated. The makers of these laws knew full well that on the surface they would look like progress. Proponents of the poll taxes and literacy tests claimed the laws were perfectly equitable: after all, everyone did have the right to vote, and everyone wishing to exercise their right was required to pay these taxes, regardless of race or gender. What the lawmakers would not publicly admit was that there were groups who would be disproportionately unable to pay, such as African-Americans, Native Americans, women, and even impoverished white people. The sums of money those states required are literally pocket change to us in 2015, but they were exorbitant amounts of money at that time.
The reality was that the poll taxes and literacy tests were quiet ways to ensure that only select groups would be unable to vote. It could have been said to anyone at that time, “Oh you could go vote, you’re just choosing not to.” Technically, this would have been correct. Yes, a person in a minority group could have gone to their local courthouse and cast their ballot, but were faced with a choice that was not really a choice: use the money they often earned with back-breaking labor to exercise their right to vote, or feed and shelter themselves and their families.
Fast forward to modern day and the Federal marriage penalty laws. There are no laws on the books that explicitly state that people with disabilities or those who are elderly cannot marry. There are no rules that explicitly state that those receiving Social Security and/or Medicaid benefits are not allowed to get married. There would probably be a public backlash if the laws were this blatant. Like the historical poll tax, it is a very insidious form of discrimination that most people are unaware of. Many advocates who are aware view it as a quiet form of ableism and ageism.
They theorize that lawmakers are aware that people receiving benefits from these programs largely fall into the disabled or elderly categories. In the minds of many young and/or able-bodied people, these groups should not be allowed to marry anyway. The theory is that Federal laws penalizing recipients of these programs for marrying are just an easy way to ensure that this does not happen, while not being outwardly discriminatory. While I have yet to make up my mind whether I entirely agree with this, it would not surprise me to find it was the case. Therefore, it baffles and angers me that people continue to claim the US has achieved marriage equality for all, just as it would baffle and anger me if someone claimed the poll tax set-up was voting equality for all.
When Mark and I mention our plight to friends, family, medical professionals, etc. Our pain is minimized, more often than not. We get statements like, “Oh, you don’t really need marriage, you know how you feel about each other.” “It’s a silly paper that doesn’t mean much.” Really? I beg to differ. The gay rights movement didn’t see it this way, and though their fight was long, drawn-out, and in many cases painful, they eventually achieved enough lobbying power to get the laws changed. I can’t help but wonder: where is our lobbying power? Where are the groups that will rise up, go to our Congress people, and try to create awareness and change for the millions of couples who are disabled or elderly? Where are the Hollywood celebrities? The musicians with world-wide fame? The high-profile athletes? Where are all the people who helped fight for same-sex marriage? What no one has appeared to consider is that the Supreme Court decision now bring same-sex couples who receive these benefits under the same discriminatory rules. While awareness of this issue is growing, I’m not sure that the disabled and the elderly communities have enough numbers to push such change forward. Collective action is often most effective, but groups/organizations who recognize this problem and its seriousness are few and far between. Those that do exist are often very small groups without the ability to attract the high-profile audience that is needed to get the attention of those in power.
I’ve known of these laws for years, and they have always disgusted me. Unfortunately I never thought to help advocate for change, because I never envisioned meeting anyone I would want to marry. Now I have, so these laws have become very personal. I wish now that I had fought to advocate for change before this issue became so personal to me, but like so many of us, I failed to act until an issue touched my life directly. However, now that it has, I will continue to work to create an awareness of this discrimination, and do whatever is in my power to see the laws changed. I hope this post will be a step in that direction.

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.

Please Watch Where You’re Going…Because I Can’t

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One of my favourite places to navigate is my university campus. People are reasonably polite. The place has a distinct community college atmosphere, which means there are few large crowds. Generally, fellow students respect the “stick to the right side” rule, so even heavy foot traffic flows quite smoothly.

Every now and then, though, someone will surprise me. I was climbing a near-deserted staircase, staying as far right as possible so I could follow the railing (I love railings, they make me feel safe and loved and whatnot). As I climbed, I heard someone approaching from above, though I found it odd that they were climbing down the left side rather than the right. Thinking that they were probably taking advantage of how empty the stairs were, I continued on my merry way (it would seem I’m always merry—who knew?). As she drew closer, though, I realized she wasn’t going to move. Rather than shift left a little—she was on the wrong side, after all—she chose to let us collide. Only as we did so did I notice a familiar clicking sound—she was texting. As I swayed, clutching the railing for dear life, I began an apology. Talking right over it, she said, “Watch where you’re going!” and stormed off. Well, darling, I would, but…

In an age when distracted driving is an epidemic and texting lanes are a thing, it’s becoming harder to trust that people will respect basic rules of foot traffic. I’ve always been used to bumping into people who refuse to move. That’s not going away. There will always be oblivious people who are too wrapped up in their conversations, or their phones, to notice what’s happening around them. Almost everyone I know has done this a time or two (I’m not blameless myself) but there are some who take it to extremes. Take a stroll through West Edmonton Mall sometime; you’ll see what I mean. Things are getting more dangerous, and I blame two things: mobile phones, and general apathy. People are so ready to assume that, if they’re not watching where they’re going, everyone else will compensate. As my city squabbles over bike lanes, I fling myself to one side as soon as I hear a cyclist approaching on the sidewalk. More than once, one of these cyclists has nearly knocked me over. No one is in such a tearing hurry that they can’t slow down for five seconds while they pass a pedestrian who can’t even see them.

“But Meagan,” you say, “people don’t always know that your blind! Most people can watch where they’re going, so how can you blame them?” I can blame them because of a little thing called visibility. If I’m standing around, sans mobility aid, then yes, I can understand people’s inability to recognize that I can’t see them. My eyes are relatively normal-looking, so it’s hard to tell that anything is wrong with them. They dart about in a frantic manner, but some people mistake this for extreme shyness. But if we are standing with canes out or dogs at our sides, there is very little excuse not to notice us. If people are paying attention to what is directly in front of them, they will definitely spot us. The girl who collided with me on the staircase was breaking an unwritten rule, and wasn’t aware of her own surroundings. This is a toxic combination. I do my best not to get into people’s way, and I apologize at least half a dozen times a day. It’s all the rage in Canada, don’t you know.

I have no problem with people bumping into me because it’s crowded, or because I accidentally cut them off. People bump each other all the time. It is not necessarily wrong or rude to do so. I’m not saying that people should throw themselves out of my path in case they brush my elbow. I am, however, saying that people could stand to pay more attention. If you know that you’re a bit distractible while texting, then move to one side, finish your text, and go your way. Don’t expect everyone—people who can’t see you, especially—to flow around you like an accommodating current.

Please, put your phone away and watch where you’re going…because I can’t.

Courage, Heroism, and Other Delusions

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Blindness is scary for anyone who hasn’t experienced it. Blindness is, for some people at least, the ultimate worst-case scenario. People have told me, to my face, that they’d rather be anything else—deaf, paralyzed, depressed—than blind. I always marvel at this shortsightedness (pun intended) but I understand it, too. If I went totally deaf tomorrow, I’d feel frightened and desperate. The thought makes me shiver, though I’d never presume that deaf people’s lives are abysses of misery. Even if I did, I’d never say it to their faces, because it’s one of the most insensitive ideas I can imagine.

Perhaps the worst thing to hear, though, is “I could never manage a life without sight…how do you do it?”

How indeed. As we all know by now, most blind people live successful, productive lives. Those who don’t usually have other factors to contend with; blindness, by itself, does not guarantee a hopeless existence. Certainly, it can be a struggle. I’m not going to gloss that over. I’ve spent the past year blogging about all the ways it can be difficult. I confess I’ve sometimes indulged in a little self-pity. Eventually, though, I just go back to my life, because what else am I going to do? I can’t wallow forever.

So, how do I do it? How do I live with this disability (or indeed my less visible ones)? I am going to tell you my secret. I am going to reveal to you the cornerstone of my continuous courage in the face of adversity. I can even tell it to you in four words. Ready? Here goes.
“I have no choice.”

Yup, that’s all there is, folks. I was born this way, and I’m going to stay this way indefinitely. I deal with blindness because it’s my constant companion. I surmount blindness-related obstacles because I have no alternative. I keep my head up because the only other option is to put it down and never lift it again. To not “deal with this” is to not exist at all, and that’s definitely not a viable solution. I mean, what would you do if you went blind tomorrow? What would you do if you had no other choice but to be the way you are? What would you do, kill yourself?

Actually, yes. Some people have admitted that they would at least consider it: “God, if I were blind, I’d be suicidal. I could never have your life. It’d be too hard. I’m not brave enough, or heroic enough, or strong enough. I’d give up completely.”

First, ouch! You think my life—or a life like mine—is so full of despair that I’d be better off dead? Second, how can you say this with any conviction until you’ve experienced it? Third … you think I’m brave? Heroic? Strong?

I hate to disappoint you, but I’m none of those things, at least in relation to my disabilities. There’s nothing like necessity to spur you on. There’s nothing like adversity to force flexibility. When enough pressure is exerted, you either bend or you break. I’ve managed to bend, that’s all. There’s nothing mystical or herculean about that.

I’m not brave because I cross the street without looking at the traffic. I’m not heroic because I advocate for my right to equitable treatment. I’m not strong because I haven’t folded yet. The human spirit is surprisingly supple—it can adapt to just about any situation. People carry far heavier burdens with more grace than I carry mine. Just because I seem brave, or strong, or heroic doesn’t mean I am. It just means I’m getting on with things.

So many people shoulder things that seem impossible to bear. They don’t do so because they want to display their courage. They do it because it happens to be what life has thrown at them, and now they’re making it work as best they can. And, if you had to do the same, I can just about promise that you’d make it work, too. There is no point telling someone how brave you think they are, and further telling them that you could never handle it. They’re not handling it out of a desire to draw attention to their mettle. They’re handling it because it’s the only way.

I’m not here to be an inspiration for others, and I’m not here to prove to myself that I’m a brave soul. I’m here because humanity went forth and multiplied, and I’ve been dealt an imperfect hand, just like everyone else. If that makes me heroic, then we’re all heroes—each and every one.

Baby, I Wanna Hold Your Elbow

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I was rushing through a mall (everything happens in malls), because I’d lost a friend and her guide dog. They’d left me behind in a cloud of dust, and I was trying to figure out where they’d gone. A stranger wanted to help, which was very kind of him. Unfortunately, his altruism took the form of grabbing the tip of my cane off the floor, raising it so that the cane was fully horizontal, and pulling on it as though to lead me by my own cane.

What else could I do? I trotted along behind him, asking him more and more frantically to put the cane down, please! He either failed to hear me, or ignored me, because he kept going until we reached my friend, at which point he let me go and went on his merry way. This, I thought wryly, should have been a teachable moment.

I’m a little shy, believe it or not, and I’m also a little too tolerant. Sometimes, people grab me and I just sort of plod along, wanting to object but not finding a polite way in which to do it. Most blind people are much more vocal than I am, and they have every right to be. After all, their safety is of utmost importance to them.

There are many ways to lead a blind person, and most of them are problematic. I won’t go so far as to say there’s a “right” way, but there is a way that is considered standard, and for good reason. The “standard way” is called sighted guide method, and it usually involves the blind person placing their hand on the sighted guide’s elbow. The grip should be light but firm, just in case something separates the two. The blind person should walk behind and a little to the side of the guide, so that things like steps, curbs, and doors will be easily detectable. In a perfect world, everyone would know this and use it, but of course this is anything but a perfect world. I won’t waste too much time going on about details; there are many sources that can teach you the ins and outs of sighted guide. I will, however, explain why it’s important and what can happen if other methods are used instead.

Alternative method: leading by the hand
Why it’s a bad idea: First of all, this is sort of weird. If I’m not familiar with you, I don’t want to be holding your hand no matter what’s happening. Cab drivers who approach out of nowhere and grab my hand frighten me just a little, I won’t lie. The main problem with this, at least for me, is that it traps my hand so that it’s harder to get free if I need to. If I’m resting my hand on your elbow, I can let go at any time. If something terrible happens to you, I can quickly escape before I meet a similar fate, after all. This goes for holding me by the wrist as well.
Possible consequence: I have been taught to twist my wrist as soon as someone touches it, so don’t be surprised if, when you grab for my wrist, I break your grip, hard, without even thinking about it.

Alternative method: leading by the shoulder
Why it’s a bad idea: People love to go behind me and push my shoulders, especially when navigating a narrow space. It makes me feel a bit uncomfortable—I don’t like to have people so close behind me, I’m paranoid—and it restricts my freedom of movement. Also…it looks kinda silly, yes?
Possible consequence: At best, I’ll admonish you and try to wriggle out of your grip. At worst, I’ll bump into something directly in front of me, because I had no way to protect my path. (This can be mitigated by carrying a cane during sighted guide—something not everyone does.) It’s much easier to move your arm behind you so I know it’s a narrow space.

Alternative method: guiding while insisting that I ditch my cane
Why this is a bad idea: My cane is my mobility tool. I have grown very used to having it around, and I quite like the confidence it gives me. I have had some awful sighted guides over the years, and I still don’t trust anyone to guide me without my cane. You could be the best guide in the world, and I’d still want my cane in my hand. I do my best to keep it out of the guide’s path, and it gives me that extra bit of tactile feedback I find so helpful.
Possible consequence: You could have an attention lapse, even for thirty seconds, and bash me into a pillar, stroller, car mirror, pedestrian, or doorframe, among other things. (Yes, people have run me into all of those and more.) Even if your guidework is perfect, I’ll still glare at you. Lots of people say, “…but I guide blind people all the time and they never use their canes. Trust me!” No. Unless it’s in your way, or otherwise inconvenient, I’m using it, and that’s pretty much that.

Alternative method: linking arms
Why it’s a bad idea: Okay…so…I’ve done this one. I cheat a lot, because I have friends who like to walk arm in arm and it’s all very companionable. Still, it’s technically a bad idea because it forces us to walk side by side, which means I have less warning for steps and curbs. It also traps my arm, which is always dangerous.
Possible consequence: If my arm is in yours and something happens to you—say, you slip on a patch of ice—I’ll be dragged along with you unless I can get my arm out of your grip in time. When being guided by a stranger, especially, I am very careful to keep full control of my arm and hand.

The best method? Ask. Some blind people prefer different variants of the same basic guiding style, so if you’re not sure, ask them to show you how they’d prefer to be guided. If you’re dealing with a blind child and you know their preference is patently unsafe, then you have the right to insist on a different way. Otherwise, please respect the individual needs and preferences of the blind person you’re guiding. They will almost always know best.

“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?