representation

I Don’t Want You to be Grateful

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I don’t want you to be grateful that you don’t have my life. I want you to ask yourself why it’s so hard, why it’s so unfair, and what you can do about it. I want you to see the barriers—the inaccessible environments and the crushing weight of low expectations—and realize that, without these roadblocks, it wouldn’t be quite so hard and unfair. I want you to know that I wasn’t put on this earth to encourage you to appreciate what you have. I want you to understand that, in a more inclusive world, there would be little need to look at a disabled person and think, “Thank God that’s not me.” I want you to know that through the smallest acts, you can help make that happen.

I don’t want to inspire you. I want my ordinary actions to be just that: ordinary. I want to be more than a motivational meme or symbol of struggle. I want you to see me, not just the white cane, the dog, the wheelchair, the diagnosis, the brain or the body that doesn’t work exactly like yours does. I want you to admire my strong points without erasing my weak ones. I want you to stop attaching “for a disabled person” to every compliment you pay me. I want you to see my talents and charms, my flaws and my quirks—the things that make me every bit as human as you.

I don’t want you to tell me you’re my ally. I want you to show me. I want you to model that care with your actions, your values and your votes. I want you to describe your photos and call out that friend who’s always complaining about the “handicaps” on welfare. I want you to ask why that new restaurant doesn’t have an accessible entrance. I want you to recognize that a thousand social media posts can never equal an in-the-moment act of kindness. I want you to accept that how you make me feel is far more impactful than what you tweet.

I don’t want to be in your diversity poster, your diversity working group, your diversity brochure. I want to be consulted for practical solutions, not publicity stunts—because my time is worth more than that, and so is yours. I want you to seek my feedback not because the optics are favourable, but because my perspective is of value and I have something to offer you. I want two-way streets. I want to help move things forward, but I can’t do that while I’m sitting at the token table.

I don’t want to make you a better person. I want to increase your awareness and deepen your understanding. I want to point you toward opportunities for growth and education. I want you to be part of the solution. I want you to stand beside me as my equal and my ally, not because it makes you a good person but because better treatment of disabled people makes good sense for everyone.

I don’t want your charity. I want you to hire me. I want you to rent to me. I want you to let me take your class. I want you to be the patient or the client or the customer who doesn’t flinch when a disabled person walks into the room. I want you to trust that I am suitably qualified and that I will meet your standards. I want you to be comfortable with the concept of working, productive disabled people. I want you to wonder why there aren’t more of us.

I don’t want you to be my voice. I want you to acknowledge that I have my own voice. I want you to amplify it, bring it to the ears of those who wouldn’t otherwise listen. I want you to help the world understand that I am not, and have never been, voiceless. I want you to refuse when you are asked to represent me. I want you to point in my direction when someone asks, “What does she think? What does she need?” I want you to step back, because I am my own best advocate. And when the world asks you to speak for me, I want you to pass the mic, because my story is mine to tell.

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The World is a China Shop (but I am not a Bull)

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One of my earliest memories is of committing, as many people call them, a random act of blindness. I was navigating one of those stores not designed for most humans. You know the ones: narrow aisles, delicate displays, teetering piles of items just begging to be toppled. My cane bumped something made of glass, which promptly shattered with what I felt was an unnecessary amount of drama. Immediately, my parents began apologizing as a staff member swooped down on us, sweeping up the pieces and saying very little. Maybe it was my parents’ reflexive need to apologize for my blindness, rather than focusing on the actual damage done, or the woman’s tight-lipped refusal to reassure, but the shame was instant and pervasive. Even as a very young child, I knew enough to realize I’d done a terrible thing, well beyond the realm of typical childlike troublemaking. I had drawn attention to myself and my fundamental differences. I had not been careless, though I’d certainly broken things for that reason before. I was not touching objects I shouldn’t, nor was I being especially rowdy. In fact, I was doing my best not to brush up against anything at all, aware that we were in a sacred-seeming place where impeccable behaviour was paramount. This had happened because I couldn’t see; because I was different; because I couldn’t control my impact on the world as rigidly as other kids could.

As I grew, I witnessed enough nondisabled people knocking things over and making messes to learn that what I’d done in that cluttered store was very human and very normal. All around me, people spill food and knock over their drinks. When they cook, food splatters. When they go into a badly designed store, they displace items just by walking past them. How many times have I stepped carefully around messes while out and about? It happens. People make mistakes. The world is an unpredictable place that is rarely designed for the maximum comfort of its population. Clear paths and barrier-free environments don’t seem very common, even though everyone would benefit from them. We are all living in a china shop, and we are all of us bulls at some point.

And yet, concerned strangers continue to treat me with fear–not only for my safety, but for theirs.

“Watch what you’re doing with that cane.”

“Are you gonna hit me with that thing?”

“Hold on, hold on, I’ll get out of your way!”

If you want to make someone feel like a cross between a fragile doll and a rampaging rhinoceros, say things like that. Bonus points if there’s a child involved.

The shame persists. I knocked over a plant at work this morning, which was perched on a window ledge. A casual sweep of my hand wasn’t enough to locate the obstacle, and when I set my backpack on the ledge, as I do at least once a week, the plant fell to the floor, pieces of its wooden stand skittering noisily into a corner. The whole affair was loud and humiliating, , and when I told a fellow blind friend about it, she shared my disproportionate shame.

“So I knocked over a plant this morning. I committed plantslaughter!”

“Noooo! Not plantslaughter! I think I would have died of embarrassment.”

“Had death been an option I might have considered it at that moment.”

Of course making messes and destroying someone else’s belongings is embarrassing. I think most people would find it so. Few would walk away from such an incident without feeling a twinge of guilt.

But as I poured myself a coffee, reassured that the plant would survive, that old familiar shame returned. I was a bad, careless blind person. My colleagues would think I couldn’t be trusted. I should have double and triple-checked that window ledge. How would I ever be taken seriously if I carried on this way?

Clumsy.

Awkward.

Unprofessional.

At some point, my more rational side piped up: wasn’t I being a wee bit hard on myself here? Was all this self-flagellation appropriate? I knocked over a plant, which wasn’t supposed to be there anyway. I didn’t harm anyone, or murder a puppy. I knocked over a precariously positioned object, I apologized, and I got the mess taken care of right away. I apologized some more. How was this situation different from when nondisabled people knock something over?

It wasn’t. Perhaps a sighted person would have seen the plant and been more careful, but perhaps they would have missed it in the dimly lit room, or been too distracted to notice. The absence of disability is no perfect shield against mistakes, and sighted people are not inherently graceful. If anything, I am slightly more cautious than the average person because I know that any error I do make may be misinterpreted. White canes and service dogs are sometimes identified as health and safety issues, which functionally means that the person using them is also a health and safety issue. Someone to be feared. Someone to be planned for. Someone to be managed.

I will never be comfortable with making a mess—social anxiety will make sure of that. I don’t enjoy disrupting my environment and I’ll always connect such disruptions, at least tangentially, with my disability. I will probably always apologize a little too profusely.

Next time it happens, though—and it will happen—I’ll think back to this moment, where I realized that I was making afar larger fuss than anyone around me. My unwarranted reaction, far from doing damage control, made it more likely that someone would alter their view of my professionalism and competence. Better to simply apologize, take care of the mess, and give myself the same grace I so easily give to everyone else.

I hope you will think back to this, too, and I hope you will give yourself a little grace.

“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.

10 Ways To Be a Good Blind Person, Part I

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Many of the blind people I know have an unspoken code of conduct, consisting of their opinions about how a typical blind person should behave. Most of us don’t expect anyone else to follow them, but we hold ourselves to these standards, determined by nothing more than personal preference. Even so, for as long as I’ve interacted with other blind people, various rules have been passed along to me, determining how a “good” blind person should behave. Besides the fact that it is restrictive and judgmental to try to tell another individual how to live his or her life, these rules are often a mass of contradictions, making it impossible for me to figure out how I’m supposed to reconcile so many conflicting views. To illustrate how ridiculous this can sometimes get, I have written out 10 “commandments” of sorts, which I’ve taken from one of the more extreme ends of the spectrum. You might call this the “independence, normality, and suppression” end of the spectrum. They are quite extreme, but make no mistake: people out there really do believe this stuff, and look down on those who don’t. Next week, I’ll give you 10 more (and completely contradictory) rules from the “dependence, abnormality, and major expression” end of the spectrum. Placing these posts side by side should demonstrate how utterly impossible it is to please the blind community at large. It all comes down to that time-honoured piece of advice: when you try to please everyone, you end up pleasing no one. I hope these make you laugh, but I hope they make you think, too; just remember, while you’re giggling over these silly commandments, there are people out there right now trying with all their might to follow them.
1. A good blind person should always be mindful that, first and foremost, life is a competition. Regardless of circumstance, the exemplary blind person will strive to be equal to or better than every other blind person they know. Should another blind person point out that it’s okay to find certain things difficult and that we’re all friends here, be sure to gently remind them that they shouldn’t go giving us all a bad name. We are all ambassadors, and must therefore take responsibility for impression management on behalf of the entire blind population.
2. A good blind person must attempt to be as normal as possible as often as possible. This begins with the relatively simple task of eliminating blindisms (i.e. any behaviour associated with blindness but not typical of the general sighted population), and should culminate in seeming as sighted as one can without actually being able to see. This will mean dressing, acting, speaking, and thinking in normal, generally accepted ways. For example, anyone found to be using “blind” in their internet usernames shall be considered deviant and will be encouraged to change their online handles to something more “sighted”. While one should accept that passing for sighted will never be achieved, one should still expend enormous amounts of time and energy trying. Should a fellow blind person deviate from the general standard of normative behaviour in any way, be sure to express the appropriate amount of scorn, lest they draw attention to their differences and make us all look abnormal.
3. A good blind person shall remain as independent as humanly possible. He/she shall seek to be an island at all times; asking for help is frowned upon, and attempting to be at peace with one’s disability in any sense is strictly prohibited. If one is forced to accept help under dire circumstances, one must display the proper level of embarrassment and despair. Despite the natural human need for interdependence, good blind people will rise above this weakness, showing the world that they don’t need anyone at any time for any reason.
4. A good blind person will be as active as possible in any blindness-related cause, campaign, community, etc. If one is not actively involved in as many blindness-related causes as are available, one shall be considered a detriment to the betterment of one’s own future and the future of others. Exceptions only apply where the cause, campaign, or community encourages dependence and/or self-acceptance. Outright disinterest in the blind Community at large will not be tolerated.
5. That said, a good blind person will take care not to become too close to other blind people beyond the level that is necessary to further the advancement of the blind in general. One shall make as many sighted friends as possible; one shall choose a sighted mate; one shall socialize with sighted groups whenever the opportunity arises. Associating with other blind people strictly for pleasure or support is frowned upon. Anyone actively inclined to surround themselves with other blind people will be considered an embarrassment to the Community as a whole. Sticking to one’s own kind is an affront to the Community’s efforts to assimilate itself into the world at large.
6. A good blind person will take on as many normal pursuits as possible. A good blind person is involved in several clubs, has tons of friends (preferably sighted ones), has a bursting social calendar, at least one college or university degree, a steady (ideally impressive and difficult) career, and of course the requisite marriage and children. Any blind person who finds contentment in a less than hectic lifestyle shall be considered unambitious and will therefore be a stain on the entire blind Community.
7. A good blind person should be unhappy with his/her lot at all times, forever wishing to be sighted, normal, and therefore on par with other humans. Any attempt to accept oneself as one is will be met with disgust and, if the attitude persists, outright exclusion from the Community. If any type of cure (or even a hint at a cure) should become available, one should jump at the chance to try it, and loudly dismiss those who are more hesitant, or who may be content with their current state of being. If necessary, a good blind person will point out that such people are a tragic drain on the system and ought to be purged from this world.
8. A good blind person should worship the sighted with due reverence and respect. They are, after all, our superiors, and ought to be treated as such at all times. One should forever strive to be exactly like them, so much so that any disability all but disappears. If one cannot emulate a sighted person perfectly, one should simply not leave the house ever again, lest they risk inconveniencing the sighted. Any sighted person trying to deny his or her superiority should be dissuaded.
9. A blind person must be perfectly competent in all that he/she does. This competence must be independent of one’s skills, talents, abilities, and knowledge. Regardless of one’s strengths and weaknesses, one must be an excellent cook, an immaculate housekeeper, a highly successful employee/employer, and an exceptional spouse/parent. Good blind people understand that they should hold themselves to a higher standard than do sighted people, meaning that they must settle for nothing less than perfection in every area of their lives.
10. A good blind person remembers that we live in a sighted world, and will, therefore, accept that they have no rights or privileges beyond what the benevolent sighted choose to allow them. Any request or demand for accessibility, if denied, should be immediately retracted with all grace. After all, the sighted world owes us nothing; we merely rent space here, and do not deserve to expect equal treatment, even when that treatment is guaranteed under law. In these cases, we must do what we do best: keep quiet.