Let’s Get This Over With: A Love Story

Exactly one year ago today, I met a new friend for a casual evening of food and conversation. We had exchanged several text messages and met casually a couple of times, but we didn’t know each other very well at all. I assumed him to be a stand-up guy—we had a few mutual friends who vouched for him—but that’s all I knew. When asked by friends and family whether this outing was a date, I protested that I was still grieving over the devastating dissolution of a 4.5-year relationship (absolutely true) and was in no state to be dating anyone, much less a near-stranger. As the evening progressed, however, and an innocuous meal turned into an entirely too romantic walk along the river valley (the sun was setting, the atmosphere was intoxicating, we didn’t really have a choice in the matter), I realized, quite abruptly, that this was, indeed, a date.
Uh-oh.
Faced with the prospect of opening myself to a new person so soon after being mistreated by someone else, I began to panic. I couldn’t possibly be ready for this! I had so many problems! My mental health was at one of its lowest points, and that’s saying something. I was perpetually exhausted, (I had new-job syndrome), and nursing emotional wounds that are still healing themselves one year later. My moods were unpredictable. My emotional landscape felt jagged and chaotic. Most days, it seemed as though I was being held together by threads so frayed and fragile they’d snap at the slightest provocation. I was an undeniable mess—not an appealing or interesting mess, the way a million colours scribbled on a page can be beautiful in their own nonsensical way. No, I was more like the mess you shove hastily into your closet when company comes knocking—the kind you pretend doesn’t exist and continually refuse to sort out because it’s too frightening. If you opened that closet door, you just know everything would come tumbling out.
That, dear reader, was the version of me trying to decide whether I was prepared to pursue a new relationship.
Certain that I had stumbled into a misunderstanding and determined to set the record straight, I did what any sensible gal would do on a first date: I sat down on this near-stranger’s couch—and an attractive stranger he was, too—and told him everything that made me undatable.
Yes, that was my first-date strategy: reveal every conceivable shortcoming, cover every awkward topic, explore every taboo, and excavate any past mistakes that would disqualify me as a suitable girlfriend. Lay it all out, get the unpleasantness out of the way, and he’ll balk, right? Surely telling him all about my multiple disabilities, my mental illness, my dubious track record with romantic relationships, my spectacularly poor choices, my insecurities, my unwillingness to ever have children, my overwhelming fear of failure—all of these would definitely scare him off, yes? In the name of honesty, I dredged up everything I could think of off the cuff that would make him retract his interest so I wouldn’t have to deal with big, scary decisions.
In short, I handed him every reason he’d ever need to call it quits before we’d even begun … as one does. (Everyone tries this on the very first date. This is a completely normal approach. I’m not currently laugh-crying as I’m writing this. Nope.)
Those of you who don’t know me very well may think you know where this is going. He was caught off guard, improvised some polite and sympathetic response, and led me gently to his door. When a woman implies, without an ounce of subtlety, that she is a disaster on legs, just thank the universe she’s not wasting your time.
Those of you who do know me, of course, will know that’s not quite how it happened. Instead, he sat quietly and listened while I gave him my spiel. He asked a few respectful questions, provided the odd empathetic comment here and there, and waited patiently until I was finished.
“So…okay…I’m sorry I dumped all this on you, but I really need to know. I need to know if you can handle all my … stuff. Otherwise, there’s just no point. Any guy I’m with has to be okay with my disabled, chronically ill, foolish self.” (For those of you fuming at my excessively self-deprecating portrayal of disability and chronic illness…just hang on. I’m getting to that.)
“Yeah. Of course. I think it’s great that you told me all this now. It’s brave to tell me, and it’s good information to know.”
As it turns out, not only did this remarkable creature have a disability of his own (moderate and mostly invisible), he was happy to explore romance with someone who had a handful of fairly serious problems, as long as I was willing to be honest about them. Exposing everything in one go, on day one, had the opposite effect you might imagine. Far from deterring him, it actually encouraged him to trust me and seemed to make me even more attractive to him. With everything on the table from the get-go—and yes, for those wondering, he did reciprocate by telling me many of his own struggles that night—we went into our tenuous relationship knowing there would be few surprises and no unnecessary anxiety about whether we were putting on a good face for each other.
Naturally, there were some who were horrified by what I’d chosen to do.
“You talked about all that stuff on the first date? Were you actually trying to scare him away?”
On the other hand, many others were pleased to hear that my impulsive strategy had worked, and a few even stated they’d like to try it for themselves, perhaps more gracefully than I had, but with the same unflinching sincerity.
“It would be kind of nice,” some said, “not to have to worry about them ‘finding things out.’ The slow reveal, especially with invisible disabilities and mental illness, can be even scarier than just spilling it all out at once.”
There was another latent benefit to depositing my life story into the lap of someone loving and respectful: I was reminded, once again, that my disabilities, illness, and various other attributes don’t make me undatable. They may present significant challenges, but they are not objects of shame, ridicule, or guilt. Choosing to date me even with full knowledge of my broad range of atypical challenges was an act of faith, perhaps, but never of charity. My partner wasn’t doing me a favour by agreeing to “handle” these things. I wasn’t “undatable,” and never have been.
Today, as I celebrate my first anniversary with a partner I have come to respect and adore, I appreciate the many ways in which our story could have veered into much darker territory. He could have been repulsed by what I’d disclosed. He could have promised he could handle it and realized that wasn’t really true. He could have used the sensitive information I gave him to do me harm. Any number of catastrophes could have resulted from the way I handled our first date. Reeling from exhaustion and pain, I wasn’t in the most stable state of mind, and I fully acknowledge that if I’d been in a better place emotionally, I may have handled this quite differently.
All this has taught me that the recipe for a healthy relationship requires trust and forthrightness from the very beginning. Even if you don’t present your prospective partners with bulleted lists of all your issues—and I don’t generally recommend that you do what I did—it’s essential that you feel comfortable around a person you’re planning to date. Romantic relationships place us in vulnerable positions, and if you don’t think your partner could handle how ill you get during migraines, or how much help you need when trying to identify objects you can’t see, you should probably keep looking. In the meantime, remember that while there may be many people out there who aren’t right for you, you deserve to find someone who is.

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Paratransit Is Bad (But Your Judgment Is Worse)

If you want to get a group of blind people to sneer derisively or rant passionately, simply mentioning the word “paratransit” will often do the trick. Paratransit, for those fortunate enough to be uninitiated, is the general term often used to describe specialized accessible transportation. Many cities offer this service, under several different names, to ensure that people who cannot take public transit can still travel. There is a very wide range of people who use these services, so they can be quite complicated to administer. Coordinating schedules is complex, particularly when life’s everyday interruptions throw a wrench into carefully-planned runs. As you can imagine, this creates an awful lot of frustration for just about everyone.
When I first signed up for paratransit, it was out of dire necessity. I was living off-campus for the first time, (I grew up in an area so rural I did not properly understand basic intersections until I was seventeen), and I needed a reliable way to commute each day. Due to less-than-ideal circumstances, I found myself living in a part of my city that was nearly impossible to navigate without sight. It certainly wasn’t pedestrian-friendly, transit was sporadic, and my options were severely limited without the ability to drive. At my roommate’s urging, I agreed to investigate paratransit.
Paratransit, I soon discovered, had its serious downsides. Drivers had a generous half-hour window for pickup, so I never quite knew when I would arrive anywhere. I had to arrange to be extremely early for everything, because I couldn’t predict how long the trip would be ahead of time. The same commute could take ten minutes one day and an hour the next, depending on the whims of the dispatchers. Scheduling was tricky and the rules were quite strict, such that abrupt schedule changes could rarely be accommodated. Even now, when I’ve been using the service for almost a year, I become anxious each time someone sends me a last-minute invitation to dinner, or I wake up feeling a migraine approaching. Since there are thousands of people using the system, my personal ups and downs aren’t met with much sympathy.
Worse still is the attitude of so many working for paratransit. While I only have firsthand experience with my own city’s system, the stories I hear are all variations on the same sad theme: disabled people’s time is neither valued nor respected. Paratransit is treated like a charitable service for which we should be quietly and reverently grateful, even though many of us pay well for it. So many seem surprised that getting to work on time is of importance to us (or that we work at all). Some appear to believe that disabled people only ever go out to attend medical appointments. Still others, mostly in administrative roles, are unmoved by the idea that, no, I can’t cancel my trips 24 hours before a migraine strikes. I don’t have that much warning. I’m human, and therefor subject to the unpredictability of my body. Disabled people are often plagued by medical issues, so the inflexibility of many paratransit services, where last-minute cancellations are penalized, suggests a startling lack of familiarity with and understanding of the very population they’re trying to serve. I am, therefore, disappointed to say that paratransit systems, in my city and elsewhere, are in need of major changes if they’re to be a viable option for disabled people with full, active lives.
Above all else, though, what make using paratransit hardest are the criticism, judgment, and snide comments of fellow blind people. Many who have had to depend on paratransit in the past speak of their transition to ride-sharing services (which not everyone can afford) or public transportation (which is not always an option) with a kind of triumphant contempt. They describe paratransit in terms so dismissive I wonder if they actually remember what it was like or if they simply had unusually terrible experiences with it. Blind people in my own city, some of whom have never even tried it, have such condescending attitudes toward it and toward people who use it that I felt as though even admitting that I use it would mark me somehow. Paratransit, I learned, was for desperate, dependent souls who are either too lazy or too incompetent to use “real” transportation. Further, some of these people actively discourage others from using the service, supplying hyperbolic horror stories that are sometimes third-hand. As I was following the long and drawn-out procedure to sign up, I was warned, again and again, of how huge a mistake I was making—so huge, in fact, that a three-hour daily commute on public transportation was supposedly preferable.
I’m pretty quiet about my use of paratransit services, but when a new acquaintance posted about her own struggles on Facebook, I paid attention to the comments she received. Many, like mine, were understanding and supportive: yes, it’s terrible, but it’s okay that you still choose to use it despite its flaws. A few, though, had a much different tone—the tone of contempt I mentioned earlier. Apparently motivated by their own misfortunes, these people seemed intent on judging anyone who uses the service by choice, as though any self-respecting blind person would get out there and learn how to use the damn buses already. After seeing this one too many times, I felt compelled to speak up at long last.
When a disabled person complains about paratransit, empathize with them. Give them advice if you have any that is relevant to them, and focus on being kind. Hold your judgment and—yes, I’m going to use the P-word, which I rarely do, so listen—check your privilege. It is a privilege to use something other than paratransit. It is a privilege to have the mobility skills and confidence to use public transportation. It is a privilege to live in an accessible location. It is an even bigger privilege to have the means to use ride-sharing services, which are financially out of reach for a lot of people.
I beseech you: next time you find yourself judging people who use paratransit, or cajoling someone into dropping it, stop and think about whether these comments will be productive or respectful. Does the person you’re talking to have personal reasons for using the service? Do they have other disabilities that have an impact on their travel needs? Do they have the skills and confidence to use public transport? Do they have the money to use ride-sharing services and cabs? Are they, like me, plagued by anxiety and a severe lack of outdoor orientation and mobility skills for various reasons? Is it, perhaps, none of your concern?
For me, and for all the people I know who willingly use paratransit and feel it is the best current option for us, do us a favour. Let us complain. Pat us on the shoulder and make comforting noises. Be there for us if we decide to switch transportation method. Do not, however, tell us yet another horror or conversion story. We’re frustrated enough as it is—after all, our ride is late again!

Helping A Blind Person 101: Ask First, And No Means No

The world is filled with helpful people, and as a disabled person, I encounter many of them. There are plenty of apathetic people to whom I’m mostly invisible, but more often than not, I meet genuinely kind people who want to make my life easier.
The downside of this desire to be helpful is that not everyone knows how to go about it. All the good intentions in the world won’t make up for assistance that puts us in danger or hinders our progress. It may sound ungrateful or presumptuous to dictate how people should help us, but a guide to offering unsolicited assistance is past due. It’s all very well for us to rant about the inadequate and unwanted assistance we receive, but if we don’t advise people on the best way to aid us, we’ll never get anywhere.
Now, this is your regular reminder that I do not speak for all disabled people. I don’t even speak for all blind people. While I listen to the complaints, recommendations, and rants of other blind people quite attentively, I don’t pretend to be an expert in all situations. The best I can do is cover the basics. So, here goes.

Ask First, always.

The issue I run into more than any other is people’s assumption that we live in a constant state of helplessness. They compensate for this by shouting instructions, touching us suddenly and without permission, or insisting that we must be lost, even when we reassure them that we’re doing just fine, thanks very much.
I really can’t overstate this: asking before offering help is not optional unless—and you must be very sure of this first—we are putting ourselves at risk of serious injury. If we’re walking straight into oncoming traffic or poised to walk off a cliff, I’d say that’s a good time to step in. These exceptions are very rare, however.
Asking for permission is the most essential part of being truly helpful, because you’ll find that most of the time we’re capable, competent travellers who know exactly where we are and where we’re going. Don’t panic if we veer a little while crossing the street, or backtrack when we walk past a door we’re searching for. Given time, we can usually straighten ourselves out. Deep concentration is at the root of problem-solving, so distracting us without being sure we are struggling is more of a hindrance than a help. Besides, asking before grabbing or steering someone is a tenet of common courtesy, don’t you think?

No means no.

Unless we are headed for the afore-mentioned life-threatening situations, it’s imperative that you listen to us and respect our wishes. If you offer help and we say we don’t need it, don’t be offended, and definitely don’t push. We’re not turning your offer down out of meanness or spite or ingratitude. We’re turning it down because we simply don’t need it, and help we don’t need slows us down and gets in our way, especially if you’re not skilled at giving directions or guiding a blind person. Chances are, if we’re saying “Thanks, but no thanks,” we mean it. Please respect that.
It’s worth noting that, if you bypass our wishes and grab or touch us without our consent, you’re treading on dangerous ground. It’s never acceptable to violate someone’s personal space, especially when they’ve made it clear that doing so is unwelcome. Here I must return to the rudimentary rules of politeness: no means no.

Be open to guidance.

Despite your level of confidence, make sure you’re open to suggestions. If a blind person agrees to let you help them, and you grab their hand, don’t be upset if they immediately break your grip and insist on holding your elbow instead. Holding the elbow of a sighted guide is safer than holding hands, and blind people have to be aware and protective of our personal safety. There are many ways to skin a cat, so to speak, but it’s up to us to tell you which way is best for our unique situations.
Note: just because you’ve used a particular method to guide another blind person in the past does not mean you are automatically entitled to use the same method again. We’re all different, and we have individual preferences and needs.

Be specific.

One memorable day, I was walking along with another blind friend. As we headed for the mall, a stranger yelled from across the street: “More left! More left!”
We both looked around, confused, and wondered what on earth he meant. How did he know where we were going? What were we supposed to take from “more left?” How much was “more?” Were these vague instructions even safe to follow?
More than anything else, this stranger’s instructions distracted and befuddled us. If left to our own devices, we would have made our way to the mall without incident. We understood that he was trying to be nice, but his chosen directions were so ambiguous that they did more harm than good.
When verbally guiding a blind person, use specific language. (If you don’t know left from right, please, please don’t use them!) Try to mention landmarks, street names, and other universally recognizable objects. Attempt to convey distance if possible beyond “a little more,” “over there,” “watch out!” and other nonspecific terms. Most importantly, don’t shout instructions across the street, since you might be wrong about our destination and are likely to throw us off course.

Use sound judgment.

Let’s say a blind person is making their way across a busy intersection. They’re about halfway across, and you decide they might need help crossing the street. You roll down your window and call out to them. They startle, seem annoyed, and keep walking without responding to you.
Has this happened to you? If so, don’t’ take it personally.
Navigating around traffic and other demanding tasks require close attention—attention we can’t afford to split between keeping ourselves safe and conversing with someone else. Most of us use our ears to feel secure when we travel, so it’s best not to add to all the noise pollution we already have to tune out. Attending to more stimuli than necessary is not something we generally find helpful, so if we’re not seeking help, leaving us alone is key. More than once, I’ve been jolted out of my “travel zone” by someone offering unsolicited assistance at just the wrong moment. I understand that not everyone is able to judge whether the situation is appropriate, which is, of course, why I’m writing this guide!

Don’t let your feelings run wild.

A few mornings ago, I was headed for my office when someone shouted “No, Meagan!”
I jumped, badly startled, and said “What?”
“You’re headed for that door over there. That’s not your room.”
“Um…no, I wasn’t headed for the wrong door. I’m not even sure which door you’re referring to. I was headed through these double doors over here.”
“No, you weren’t.”
“I…definitely was…”
“Whatever, then!”
She stormed off in a huff, no doubt wounded. Rejecting her good deed of the day was enough to cause offence and even, it seemed, resentment. I had managed to anger someone simply by not needing their help.
This person made quite a few mistakes here:
• She shouted very suddenly, frightening and distracting me.
• She used general language I couldn’t make sense of, as “over there” is not particularly descriptive.
• She assumed she knew where I was going, even though there were many places I could have been going to besides my office. (Maybe I was looking for the washroom, or the staff room, or the exit, or any number of places.)
• She did not believe me when I explained that I did not need guidance.
• She took it very personally when I continued to make my own way.
As is typical of me, I was far too polite to say any of this to her. I really have to work on that. I did not want to cause strife or make a scene, so I just walked away and let her think she was right. That was the worst thing I could have done, I know, though as she’s done this type of thing before, I doubt the message would have penetrated her obstinacy.
There’s something disconcerting about being told you’re wrong on the basis of absolutely no evidence at all. To my thinking, it takes an awful lot of confidence and nerve to assert that you know someone better than they know themselves. I’ve never seen an able person continually gaslighted, to the point where they wonder whether they really are going the wrong way. The attitude of “You’re blind, so I must know better” is disturbing, and I’d like to see it disappear.

Let’s recap, shall we?


So, try to remember that, while we appreciate help and occasionally need it, there’s a right and wrong way to give it. If we refuse your offer, don’t interpret it as a personal slight. If we explain the best way to help, respect our knowledge and expertise. If we become frustrated when our space is violated, don’t resent us.
Finally, if we tell you that your help was unwanted, don’t accuse us of ingratitude. We’ve no right to be excessively rude about it, but we do have the right to say no. Disabled people do need help, but only we get to decide what that looks like.

So You Like To Pet Service Dogs…

As I watch you encourage your child to engage with a working dog, even after the handler has asked you to stop, I cannot help but feel angry: angry that you, a stranger, feel that your child’s right to interact with a cute puppy dog is more immediately important than the handler’s wishes. I am angry that you would argue with a firm denial, even when it is given with respect and gentleness. I am angry that you are showing blatant disrespect for the safety and comfort of the dog’s handler. I am angry that you are teaching your child to disregard the proper treatment of service dogs. I am angry that you, as the parent, are refusing to live by example. I am angry that you are ensuring that service dog handlers everywhere will have to keep saying “please don’t pet the dog” indefinitely.

I understand: the dog is beautiful, and friendly, and a pure delight to touch. Your child adores dogs—probably, the dog adores children, too, and would welcome a little affection. You are a dog lover, and hate to deprive yourself or your child of the opportunity to indulge in a bit of doggie-interaction. You don’t want to disappoint your child. I’m a dog lover, too. I understand. But …

I’m here to tell you that it doesn’t matter, because you may choose an unsafe time to distract a working dog, thus inconveniencing or even endangering the handler. It doesn’t matter, because the dog has a million distractions to contend with already—dropped apple cores, other dogs, and tantalizing bits of popcorn—without sudden attention from a strange human. It doesn’t matter, because you should never touch someone else’s property without permission—and yes, the dog does count as property in this instance. It doesn’t matter, because you were told no. That, on its own, ought to be good enough.

Many of my friends are dog handlers, so I can guarantee that they don’t enjoy telling an eager child that they can’t touch the puppy. They don’t enjoy saying “no” three times a day. They don’t enjoy denying you the company of their dogs. They just want to get where they’re going without fuss, and the last thing they feel like doing is disciplining a complete stranger. They are not part of a conspiracy to ruin your fun. So …

Why do you do it? Why do you insist, even when you know better, upon continuing to violate another person’s space? Why do you continue to place handlers in awkward positions where they must discipline your child because you refuse to do so? Why do you care more about touching that sleek coat than you do about whether the handler makes it across the street safely? Why do you care more about your right to go to pieces over the cute doggie than another human’s right to autonomy? The dog is an extension of them, and when you touch the dog, you’re effectively intruding on their personal space as well.

If I placed a wandering hand into your stroller to give your child’s head a stroke, wouldn’t you be a bit nervous? If I reached over and grabbed your arm to say hello, wouldn’t you be annoyed? If I insisted on distracting you while you were trying to do an important job requiring vast concentration, wouldn’t you wonder where my manners were? So I will ask it of you: where are your manners?

Yes, we’re talking about a dog here, but that doesn’t exempt you from the rules of basic human courtesy. Maybe the dog would love to be stroked just now. Maybe the dog has had a long day and would love to flop down and have its belly rubbed. Ultimately, though, the dog has a role, whether that’s guiding a blind person, or alerting the handler of an approaching seizure, or assisting a police officer. That role precludes them from being an ordinary dog while they’re out and about. When that harness is on, the dog is not a cute little puppy you run up to—it is another living being, hard at work and deserving of your respect. Even more importantly, the dog is attached to someone who is depending on them, and that person is also deserving of your respect.

To those who pet the service dogs: no excuse is good enough. Please, for the sake of safety and common decency, stop.

I Put My Trust In Strangers (And It’s No Big Deal)

Nearly every time I show a stranger how to use sighted guide, they view my trust in them as admirable and brave. “I mean, I could be anybody! I could walk you off a cliff or something!” Some guides are so nervous that they get distracted by the burden of responsibility; this usually results in decreased awareness. I try to encourage them to relax: a nervous guide is usually a dangerous one—or at least an inconsistent one. Even the best guides, though, seem somewhat uncomfortable with the amount of people I need to trust in day-to-day life. I trust guides not to walk me off cliffs, it’s true, (though using a cane in conjunction with sighted guide helps—not everyone does this), and I trust people to be generally decent. I assume that most people will not deceive, manipulate, or harm me. And you know what? Most of the time I don’t give these assumptions a second thought.

All this trust bothers sighted people, though. Perhaps it’s because they are acutely aware of how much they rely on sight to keep themselves safe, so the idea of going without terrifies them. Perhaps it’s because they recognize their own fallibility, and they imagine my inherent vulnerability must far exceed theirs. The most likely explanation is that people worry about me, and want me to be okay. I’ve encountered peers who expressed horror and anxiety when I told them about all the times I’ve nearly been run down by drivers who didn’t feel like obeying general crosswalk etiquette. Fear is becoming a staple of most Western cultures, and that fear multiplies when disabled or otherwise vulnerable populations (like children, for example) are involved. We can’t let kids play out of their parents’ sight, and God forbid we allow them to climb a tree or walk to school on their own. This general anxiety invariably extends itself to shroud any and all disabled people, to the point where the able-bodied are far more afraid for our lives than most of us could ever be. Most of these risks are genuine, and the resultant anxiety has its roots in sensible instinct. I don’t intend to trivialize the very real dangers vulnerable demographics contend with. I don’t blame you for feeling a little overprotective of your children or disabled friends. It’s perfectly natural.

Everyone has to trust sometime, of course. Any time you get into a taxi or board a plane, you’re entrusting your very life to a stranger, whom you hope is well-trained and trustworthy. If you can’t operate a plane, you trust a pilot. If you can’t navigate a brand new area with complete confidence without sight, you trust a sighted guide. It’s that simple.

Now, I can’t discuss trust without emphasizing the need to have that trust honoured. If I trust you enough to let you lead me somewhere unfamiliar, particularly without my cane, you’d better not leave me stranded. If I trust you to obey the basic rules of traffic, you’d better not run me down. If I trust you to describe my surroundings, you’d better remain truthful. These are the basics.

If I’m trusting you to respect me, please don’t use my own blindness against me, particularly in public where opportunities for humiliation are numerous. If I’m trusting you to be my eyes, don’t exclude or invent details just because you can get away with it. If I’m trusting you to treat me like any other human being, please don’t make a spectacle of me. (Disguising your voice in an effort to trick me is not cute.) Finally, if I’m trusting you to keep me safe, don’t warn me of fictional obstacles, or subject me to similar practical jokes. They’re hardly ever funny and they can be more dangerous than you know. When in doubt, ask which ones I’m comfortable with, and if you’re a stranger, assume they’re unacceptable until you’re told otherwise.

This is not to say that I rely on others for every little thing. My readers, in particular, will understand how highly I value independence. If I can do something safely and well on my own, then I’ll avoid asking for help I shouldn’t need. Still, to pretend I never need help is misleading. So, yes: I do put my safety in other people’s hands on occasion. It’s almost never an issue.

I’m at peace with having to trust people, even strangers. I have little choice but to count on human decency, and so I do. In the vast majority of cases, my trust is valued and my faith rewarded. Nine times out of ten, I don’t even think about it, because it’s so intrinsic to my lifestyle. So don’t worry too much. You’re probably a better guide than you know. You’re probably a more accurate, useful describer than you realize. In short, relax: you’re probably doing just fine.

“Mommy, What’s Wrong With Her?”

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.

“But…I Meant Well…”

Ah, good intentions: everyone’s favourite get-out-of-jail-free card. It seems that you can get away with anything, as long as you were trying to be a good person. Every day, people excuse discourteous, disrespectful, and even dangerous behaviour because “they meant well.”

A stranger assumes a blind girl wants to ride the escalator, so snatches her arm as she walks by and leads her onto it without explanation. Dangerous, but it’s okay, because she thought she was doing a good thing.

A mother rearranges her son’s entire apartment while he’s away, so that he doesn’t know where anything is when he returns. Discourteous, but it’s okay because she was just trying to help him out.

A teacher addresses her third grade class, assigning a student to play with the only blind member of the group. Humiliation (for the student) and resentment (from the rest of the class) follows. Disrespectful, but it’s okay because she was just trying to foster tolerance and inclusiveness.

I’ve said a hundred times that it’s okay to make mistakes. I’ve also reassured sighted people that their kindness really is appreciated, even when it’s misguided. What I’m sick of doing, though, is looking the other way when someone tries to cancel out the damage they’ve done by citing good intentions. I’ve witnessed people say and do terrible things in the name of “meaning well”, and I’m sick of pretending I’m okay with it. It’s not okay with me, and it’s not okay with the vast majority of blind people I know.

It seems to stem from the belief that any help is good help; any kindness is something to be grateful for; and every time a sighted person deigns to do something nice, we should all be brimming with thanks. But what if we don’t really want that specific help? What if we like how our apartments are organized? What if we had no intention of going on that escalator, and could find it ourselves if we did? And what if we prefer to make our own friends, rather than having people assigned to us like we’re the ultimate charity case?

Generally, we know exactly what we want, and we’re normally okay with asking for it. This does not give us license to be demanding jerks, but it does afford us the opportunity to pick and choose which types of assistance we can benefit from and which we’d rather discard. You might think you’re helping me if you follow your charitable instincts and “fix” bits of my life for me.

Here’s the cold, hard truth, though: if I didn’t ask you to do it, chances are I didn’t want it done. How would you feel, as a sighted person, if your mother came over one day and waited till you left to completely reorganize your home? You’re an adult, so you are allowed to decide how you want your place to look. You did not ask her to do this for you, and you definitely did not appreciate having to hunt for everything once you got back. It’s even worse for blind people, because it takes us so much longer to find everything once it’s been displaced. We occasionally use complex systems of organization, so moving our stuff around has greater consequences than you might imagine.

But let’s skip past the sheer inconvenience and danger of having yourself or your belongings tampered with in the name of good intentions. Let’s amble over to the area of respect, because it needs attention: if a sighted person treated a fellow sighted person the way they treat blind people, there would be uproar. You’d have to have an awful lot of nerve to go around messing with other people’s things in general, wouldn’t you? And you’d have to have even more nerve to grab a complete stranger and direct them elsewhere, right? So why is it suddenly okay if the person in question is disabled? Is your need to do your good deed of the day more important than their need for personal autonomy? I really, really hope not.

Most people aren’t consciously aware that what they’re doing is neither wanted nor appreciated, but I know an awful lot of people who have been warned, and warned again. Still, they persist. Parents and other relatives, especially, are notorious for this; they assume that whatever they’re doing is still okay, even if they’re asked to stop. They mean well, and that should be the only thing that matters. Shut up and be grateful, why don’t ya?

It’s not acceptable. It never was and it never will be. If you want to flex your kindness muscles—and I recommend that you do, by the way—ask how you can help. Except in very, very special cases where a disabled person is in immediate danger, put your good intentions away and pull out respect. That is something I can be grateful for.