Weightless, Wanted, Worthy

While reading Martin Pistorius’s powerful book, Ghost Boy, I was struck by a passage in which Martin, experimenting with a body that does not behave predictably, attempts to make breakfast for his partner, Joanna.

I forced the knife downwards, cleaving it to my will as it hit the side of the toast before skittering across the plate and leaving a glistening red slick on the table. I stared at the battered toast before looking at the floor, which was covered in coffee granules and sugar. The butter looked as if a wild animal had chewed it and jam had erupted like a volcano across the table. Euphoria filled me. I’d made toast, coffee was waiting in the cups, and the water had boiled—Joanna was going to have breakfast. I banged a spoon on the table to let her know I was ready, and a smile spread across her face as she walked in. “How nice to have breakfast made for me!” she said.

Some might interpret Joanna’s enthusiasm as pretense. As you read through the book, you quickly discover that while Joanna is fully aware of the many barriers Martin faces, she supports his efforts to try new things, even when they end in an imperfect, sticky mess. Martin and Joanna’s marriage is founded on genuine respect and validation, with no suggestion that she is giving anything up to be with him. Rarely have I seen such a beautifully balanced framework, where limitations are acknowledged but never allowed to overwhelm the entire structure.
Naturally, reading about Martin and Joanna got me thinking about my own relationship. My partner has a disability of his own, but it is invisible, and comes up so rarely I sometimes forget it exists at all. We live much like a couple in which only one party is disabled, and we both had to adjust to the different things we need from each other to grow and be happy.
In addition to needing all the conventional things, like love and companionship and the space to laugh with someone in the face of life’s trials, I also crave specific validation from my partner—the validation that says, “I acknowledge that you are disabled, but you are no less complete for it.” From day one, even as I walked him through my various barriers and how they might be an issue for him, he treated me like a whole, autonomous person, and nothing less. If I ever feel inadequate or out of place in the context of our life together, it is my own anxiety talking, not his. Again and again over the past few years, I have been caught off guard by the simple, implicit trust this man places in me every day, without thought and without a hint of charity. Strangers on the bus might wonder what I’d do without him, but he frequently asks me what he’d do without me.
What does this look like in practice? Mostly, it’s an intangible thing—more felt than seen, and usually unspoken. I can point to scores of small things that add up to a larger pattern, and that’s how I can best explain the dynamic.
For example, he asks my opinion on things, with the assumption that of course I’ll have one, and of course it’s as valid as anyone else’s. He doesn’t bombard me with questions about how “blind people” feel about X Y or Z. No, he asks about the best way to install a showerhead, or which ingredients would enhance a new recipe, or what political news of the week is most relevant. Far from assuming I mustn’t be knowledgeable about anything outside the realm of my disabilities and personal interests, he assumes that I am likely to know a little about a lot, and if I’m not sure, I’ll be straightforward about that. I don’t always have opinions or suggestions, but it is so novel and so satisfying to be asked as an equal—as someone who knows things and whose judgment can be trusted. It shouldn’t be so remarkable, but I think most disabled adults would agree that unless the topic is disability-related, our voices are often overlooked.
Like Joanna, my partner doesn’t expect perfection from me, but does expect me to experiment, and won’t ever shame me for the results. He would rather I demolish the kitchen cooking breakfast than have me avoid cooking altogether in case something goes wrong. It’s not that he humours me or enjoys watching me struggle. He simply expects me, as his partner, to contribute where I can and shed my irrational insistence on perfection. If I get hopelessly lost while attempting to conquer my travel demons, he’ll still be sincerely proud that I was brave enough to try, without resorting to empty praise or minimizing my mistakes.
As I’ve noted several times on this blog, living well with disability requires a great deal of self-confidence—or plenty of skill at faking it until you make it—because that confidence won’t come easily from outside yourself. If you don’t have faith in your abilities, you may struggle to find someone else who does. The less you feel you have a right to your place in the world, the less welcoming the world seems to be. While I’ve cultivated my own strong sense of self-respect, I’ve discovered it’s far more bracing when my partner reflects it back at me. I am fortunate indeed to make my home with someone whose faith in me exceeds my own, never hesitating to remind me I am whole.
I’ll return to Martin’s words, because he put it so beautifully: “I’ve lived my whole life as a burden. She makes me feel weightless.”
I, too, have lived my whole life worrying that I am too much like unwanted luggage. But he, together with so many others, makes me feel weightless, and wanted, and worthy.
From where I’m standing, there is no greater love than that.

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Backhanded Compliments and the Tyranny of “Nice”

Many children learn early on that their smallest accomplishments are cause for cheers, applause and glowing social media posts. When you’re very young, your every milestone and every “first” are worthy of celebration, and with good reason. There’s nothing wrong with praising a child for walking well or pouring drinks with accuracy. For most people, this trend eases and finally stops, and they start earning praise for more impressive stuff like finishing a degree or landing a great new job. It would be pretty weird to keep cooing and cheering over an adult who can navigate their own home without guidance and pour coffee independently, yes? You’d be mortified if someone seemed surprised that you, a fully-grown adult, were capable of essential daily living tasks, right?

Right?

Sadly, an awful lot of  very well-intentioned people appear to have missed that memo—the one that says admiring someone’s basic skills stops being cute when they’re all grown up, and that disability is no exception to this rule. It is no less embarrassing to hear “Wow! You handled those steps so well!” or “You got your own coffee!” when disability is involved. While some of us do work harder than the average person on cultivating everyday skills—some of us very hard, in fact—drawing attention to our prowess can feelmore patronizing than validating. I don’t speak for everyone, which is the caveat I always mention at this point in a post, but I can say with confidence I do speak for a very large number of us.

Look, I get it: you want to say something nice, make someone smile, acknowledge what you consider to be exceptional talent or strength or perseverance. Maybe you feel inspired by the person you’re complimenting, or perhaps you can’t think of a better way to break the ice. It could be that you’re genuinely curious about how they get things done given the barriers they face, or you’re anticipating they’ll need help later and you want to develop rapport in advance. You’re a nice person, just trying to do a good deed for someone else. I truly do understand.

Keep this in mind, though: a great many times, being kind is preferable to being nice. Emotions tend to run very high in these types of situations, because no one likes discovering their attempt to make someone happy might be backfiring. Nevertheless, I do believe most people want to treat disabled people kindly, and kind people don’t make others feel condescended to or humiliated, even with the best of intentions. Kind people consider context, and compliment accordingly. And kind people don’t let “I was just being nice” outweigh any harm they might cause.

You may be shaking your head, feeling down on yourself because you know you’ve messed up this way. I beg you not to take this personally, however. In my experience, just about everybody makes this mistake at least once. It’s not isolated, and it’s not rare. Even if you actually have a disability, you have probably done this to someone without being aware of it. Proximity to disabled people should never be mistaken for immunity, and I’d be hard pressed to think of someone who hasn’t fallen into this trap. I’ve certainly spent some time there myself, and I ought to have known better.

So, here’s a simple test to help you. Next time you plan to praise a disabled person for a specific skill, ask yourself whether you would feel awkward if that compliment were directed at you. Would it make you uncomfortable if someone patted you on the back for, say, picking out your own outfit? Might it be a little off-putting if someone congratulated you for knowing where the staff kitchen was, six months after you started working in the building?

If you determine that the compliment you want to offer would make you feel pretty good about yourself, go ahead, as long as it’s contextually appropriate. Feel free to tell me if you like my writing skills. Tell my designer friends they have excellent creative instincts. I have no doubt my partially sighted partner would love to hear that you enjoy his cooking. These are all respectful compliments, and there’s no backhanded “You do well … for a disabled person”subtext attached. Further, you avoid giving the impression that people whose disabilities mean they do need help with basic tasks are somehow inferior to people who are able to do those tasks independently. After all, an adult who needs assistance with grooming, for example, is no less worthy for needing that help.

On the other hand, if the compliment you’re considering would feel insulting or at least bizarre if directed at you, that is your cue to pause. Think about whether you might be causing more discomfort than goodwill, and be mindful of who is around. Being complimented on my travel skills when I’m crossing the street is one thing. It’s distracting and unnecessary, but I’ll survive. In a professional setting, however, it’s likely to make other people notice me not for my solid work ethic or valuable skills, but for a disability that does not and should not fully define me.

Don’t be shy about telling people what you admire about them. Nothing in this post is suggesting you have to conduct a full-scale cost-benefit analysis every time you make a positive comment around a disabled person. I’ve received quite a few thoughtful compliments in my life, and while I’m not as graceful about taking them as I’d like, they’re always welcome. I do ask that, in future, you run through that simple test in your mind, and practice being more deliberate about how you dish out praise. Many, many of us will thank you, if only inside our heads.

Oh, and if you simply want to know how something gets done, or how a particular barrier is managed? Google your question, or ask. If we’re not crossing an intersection or trying to do our shopping, most of us are quite happy to answer.

In Defence Of “Internet” Friendship

“So, where did you meet your friend?”

“We used to post to the same forum, and–”

“Oh…so not, like, a friend friend.”

“A friend friend?”

“You know, like a…real friend. Someone you actually know.”

Friendships forged through online interaction have gained considerable legitimacy since I was a wide-eyed teenager first experiencing the internet, but it’s dismaying how often online connections are still casually dismissed by people of all ages. Apparently, there was a top-secret, authoritative friendship conference that resulted in an unofficial friendship hierarchy, which influences the way friendship is viewed by everyone ranging from seniors to high schoolers.

According to this mystical hierarchy, you can’t measure a friendship in love, but in geography. If you only see your childhood friend once a year for a quick coffee and cursory catchup, that still ranks higher than an “internet” friend whom you haven’t met in person but with whom you communicate daily. Friends who live across the street usually carry more weight with people than a friend who lives across the world, regardless of intimacy, frequency of communication, and overall satisfaction derived from the friendship. (This also applies to romantic relationships, as I learned to my immense chagrin while dating men I’d met online.)

Besides the fact that I find this arbitrary standard inflexible and anachronistic, I also feel it comes down heavily on disabled people, who seem to have an especially large number of online friends. Anyone experiencing loneliness, isolation, and/or a lack of conventional social opportunities can benefit from online social networks. Reducing internet interactions to something pale and second-rate targets a population that is already marginalized. While many disabled people can and do seek social opportunities within their geographical sphere, the internet is an enticingly level playing field where the experience is smoother and the supportive communities are numerous.

My isolated childhood remains a living advertisement for the value of online friends. I was an introspective soul who struggled to make friends in traditionally-accepted ways, so internet social circles were far easier for me to embrace. Online, I didn’t have to be the awkward, introverted blind girl. I could talk to people who were older and wiser than me, share resources with fellow blind peers, and enjoy a sense of social freedom that wasn’t present in my small-town ecosystem. I treasured the offline friends I did make, but rural life didn’t offer the diversity and sense of belonging I found online.

Now, as my life becomes busier and my chronic pain limits my social activities, I appreciate my supportive online network of disabled and non disabled friends more than ever. The love, encouragement, assistance, and companionship they offer are as real and meaningful as anything provided by my equally-adored offline friends. As my heart breaks with the death of an online friend’s husband, and soars with joy at another online friend’s success at work, I do not doubt the gravity and significance of friendships conducted and sustained via the internet.

My internet friends are indeed “real” friends. When they are troubled or grieving or frightened, I comfort them. When I need a friendly ear in the middle of the night, there is always someone to call. My online friends send the best care packages, letters, and virtual (but no less heartfelt) affection. We pay astronomical amounts to visit each other, and make memories we cherish for years. We assist each other financially, emotionally, and spiritually. My online friends may not be able to drive me to an appointment or hold my hand when I’m ill, but they can provide love, advice, compassion, empathy, and laughter.

Never let anyone disparage your online friendships. The internet is a fickle medium, and you may certainly find dangerous, duplicitous people there–people whom you will befriend and later delete from every social network, wondering why you were ever naive enough to trust them. More often than not, you’ll find people who are excellent friendship material–people who will fuse your happiness with theirs and do everything in their power to enrich your life. Whatever people say, however much they scoff, appreciate and cherish the friends you make online, and always measure your relationships in love and respect, not geography and popularity.

A Disabled Person Refused Your Help? Keep Calm And Carry On

Here’s an uncomfortable truth: one of the inescapable pitfalls of blindness is a lack of precision. Even with the help of a guide dog, no blind person is as precise in their every movement as most sighted people. In familiar surroundings, we can dazzle with our ability to navigate with grace, but take us outside our elements and we can flounder. It will take us a little more time to find door handles; locate a cup someone has just placed in front of us; connect with someone else for a handshake; retrieve a dropped object. There may be fumbling. There may be moments of awkwardness in which our questing hands are a quarter of an inch away from what we’re seeking—just enough to drive sighted people crazy—though we’ll always figure it out eventually, either on our own or by asking for specific assistance.
And you know what? That’s okay.
The nondisabled person’s obsession with precision can be taxing. If it takes me a second longer to find an object than a sighted person deems reasonable, I can expect to have frantic instructions lobbed at me. I can also expect an exasperated sigh, or a pitying tongue-cluck. Often, sighted passers-by say something like “I hate watching you looking for stuff! It just kills me. It’s right there!”
The situation will usually escalate, and I’ll get grabbed, even and especially by people I don’t know. Crazed as they are by the idea of someone taking seconds longer than is typical to accomplish everyday tasks, many nondisabled people are filled with an insatiable need to speed things up.
You may accuse me of hyperbole, and if you’ve never seen this phenomenon in action, I wouldn’t blame you. Trust me when I assure you that this happens, and it happens all the time.
A few weeks ago, I was entering a crowded room. My plan was to emerge slowly, and search methodically for the empty seat I knew had been saved for me. Before I had time to take one step forward, someone detached herself from the crowd, galloped toward me, grabbed my arm in a disconcertingly tight grip, and proceeded to escort me to my seat as though I were in danger of being trampled by invisible elephants.
“I’m sorry,” she gasped, not sounding particularly sorry at all, “I know you can find it yourself, I just…it’s the mom in me, you know? Can’t help it!”
(What I did not say: “Yeah, but you’re not *my* mom, and when my mom pulls stuff like this, she hears about it. Ask her. She’ll tell you.”)
Soon after that incident, I was approaching a freshly-mopped patch of floor. A woman warned me of the wet-floor sign, which I appreciated, but she was not satisfied with my cautious pace. As I prepared to walk past her, she rushed to my side—herself in danger of slipping on the floor about which she was so concerned—wrapped her arm securely around me, and led me across the wet patch with such delicacy, you’d think we were crossing a frozen lake while ice shifted ominously beneath us. I felt like someone’s frail grandmother, (please don’t do this to your grandmothers), and since I was in something of a hurry, I was especially displeased.
People have decided, without any input from me, that I cannot be trusted to climb stairs, walk down hallways, find doorways, eat, pull out chairs, cross streets, use escalators, walk down ramps, and get into vehicles safely. (This is not an exhaustive list.) For so many people, I am either seconds away from grievous injury at all times, irritatingly clumsy, or both. There is something in some nondisabled people’s minds that can’t handle the idea of taking your time, making mistakes you can learn from, doing things your own way. The insistence on everything being as precise and efficient as possible dismisses any alternative way of doing a thing if it’s even a beat slower. Each time someone says “Oh forget it! I’ll just do it! It’s faster!” I get a tiny ache in my gut.
The crux of this isn’t so much that I object to people being helpful or overly concerned with my safety. I’m grateful that anyone takes enough notice of me to care whether I break my neck on a wet floor or get trampled by elephants. It’s the irritation that causes me the most pain. The idea that someone’s blood pressure would spike just by watching me put an empty fork in my mouth or backtrack to find a landmark I miss cuts deeply. Am I truly that painful to witness? Is this the root of all that unwanted, unwarranted pity?
Yes, sometimes a sighted person’s methods are quicker. It often happens that I’m happy to surrender a menial task to someone with working eyes because they’ll get it done at least as quickly as I can, and may do it more efficiently, too. I’ve never been the most competent blind person in any room, so I freely acknowledge and accept that in matters of mobility, especially, I’m a little slower than most. My spatial awareness isn’t all that reliable—not a blindness thing, just a Meagan thing—so I’m content to concede that sighted people get around with accuracy that’s beyond me, especially because I don’t have a dog’s eyes to help me.
Despite how nondisabled people feel about it, I’m quite comfortable with this reality–probably too comfortable with it, by some standards. I’m accustomed to being a bit slower, a bit more hesitant, a bit less exact, and after about two decades of it, it’s not a concern for me. I am quick and clever and efficient in the ways that matter to me. I can type like the wind. I can research well and write quickly. I can edit with a thoroughness that is at odds with my turn-around time, which has been praised for being unusually swift. My public speaking and facilitation skills are rapidly becoming my strongest assets. In these ways—the ways that pay my bills and make me useful to society—blindness interferes very little, if at all.
All things considered, why should I despair when it takes me ten seconds to find a door handle? Is it worth being upset because I walked past the staircase I was looking for and had to double back? Will anyone’s quality of life suffer because I tried and failed to give them a high five?
Nope.
So, nondisabled people, as much as I understand and appreciate your wish to help, please keep calm, and carry on if your help is not required. Please keep your hands off strangers, and even off friends and family members unless they have given permission. Remind yourself, when you feel that urge to “fix” a situation, that precision isn’t everything. Efficiency isn’t everything. Perfection isn’t everything.
Independence, autonomy, consent, respect—these are everything.

Let’s Get This Over With: A Love Story

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 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 mere acquaintance. 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 was nursing emotional wounds that are still healing. 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 daunting. If you opened that closet door, you 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 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.
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 more of your time.
Those of you who do know me realize 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. Anyone 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 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?”
“Well…yes.”
On the other hand, many others were pleased to hear that my impulsive strategy had worked, and a few even confessed 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 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 would handle it and realized that wasn’t a promise he could keep. 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 dealt with this 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—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 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.

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 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 experiences of other blind people 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 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 heading straight for oncoming traffic or poised to walk off a cliff, I’d say that’s a good time to step in. These exceptions are rare, however.
Asking for permission is the most essential part of being 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 landmark. 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 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 consent and personal space are concepts most nondisabled people cherish as much as their disabled peers. If you wouldn’t ignore consent when interacting with a nondisabled person, there is no justifiable reason to ignore consent when interacting with a disabled person.

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, tread softly until you know what they need from you. For example, if you grab a blind person’s 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 a 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 down the street with another blind friend. As we approached our destination, a stranger yelled from across the street: “More left! More left!”
We both slowed down, confused, wondering 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 found our way 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 don’t use them!) 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 think 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.
Travelling while blind requires sustained attention—attention we can’t afford to split between keeping ourselves safe and deciphering sudden shouts from unexpected sources. 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 actively 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 striding confidently toward 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 at very close range, frightening and distracting me.
• She used ambiguous language I couldn’t parse, as “over there” is not particularly descriptive.
• She assumed she knew my destination, 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 didn’t need guidance.
• She took it 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 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 a nondisabled 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, especially when we blind people internalize it for ourselves.

Let’s recap, shall we?

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. Disabled people do need help, but only we get to decide what that looks like.