Trepidation and Triumph at CSUNATC2018

When an exceedingly kind friend offered to be my full-time sighted guide for 2018’s CSUNATC conference, I recognized that I was being offered a unique opportunity that could not, under any circumstances, be passed up. I’d spend a few days in idyllic San Diego, learning about accessible technology and basking in the company of a long-time friend whose social and tech savvy can’t be overstated. She promised to help me navigate the conference, escort me to presentations, and provide networking opportunities I’d struggle to obtain on my own. I was elated. I was grateful. I was excited!
I was also terrified.
You see, dear readers, the word “introvert” was coined specifically for me. While I enjoy a rich social circle and do well when representing employers at special events, high-energy occasions like conferences are about as frightening to me as a nest of angry wasps. In fact, if I have to attend a networking event outside of an employment context, I think I’d rather take the wasps, and that’s saying something. Excessive noise, bustling crowds, and unfamiliar environments combine to create a horrifying mix, and nothing but my relentless quest for self-improvement could make me brave it. (Meeting one of my best online friends helped sweeten the deal, but only slightly.)
I knew how fortunate I was to be attending CSUNATC2018, and I felt the appropriate level of eagerness, but part of me was sure I’d need several barrels of courage to manage. For if there is one thing that makes me more uncomfortable and cagey than large-scale, international networking events, it’s being around large numbers of blind people.
Yes, readers: I am afraid of blind people, especially when they get together, and attending CSUN would demand that I not only confront that fear head-on, but that I ask myself, finally, why the fear exists at all.
The gist is this: I went to CSUN to learn about tech. I learned a little, and certainly enjoyed the presentations, but most of the education had less to do with the accessibility world, and more to do with deeply-rooted insecurities so entrenched that I’d forgotten what it was like to question or even acknowledge them.
If you’re interested in my journey of self-discovery, stay with me. If you hoped to read all about promising new tech, I’m sure there are many excellent write-ups by people much better-versed on the subject. Either way, enjoy!

“Let’s play ‘count the blind people!’”

As we weave somewhat drunkenly through the airport, dragging unwieldy luggage and trying not to trample anyone, my sighted guide chatters blithely about how many blind people she sees going by.
“There’s another one! I think that’s the seventh I’ve seen already.”
“Oh God.”
“What?”
“I’m legitimately afraid of blind people. I mean, they’re okay in small groups, and I love them as individuals, but when we all get together, it’s … I just don’t like it.”
My friend is too gracious to pursue the matter, but it becomes obvious soon enough that my mobility demons, which I’d warned her of previously, are out in full force.
My cane grip must be all wrong. My posture, surely, couldn’t be close to proper. I’m leading with my right shoulder, which is a problem I’ve never been able to correct. Do I ride escalators in a weird way? Am I the only one who doesn’t know print numerals well enough to operate an elevator without brailled numbers? Does it show that I’ve received so little orientation and mobility training I’m not even sure if my rudimentary indoor travel technique is right? Is everyone judging me? Am I a fraud of a blind person?
Oh God, everyone’s definitely judging me.
I want to go home now.

“Let’s get oriented!”

I attend a small orientation tour to learn the hotel’s basic layout, reasoning that I’ll pick the information up more quickly if there aren’t too many people around me. But, as we meander along, passing various significant locations, I lapse into a fog of panic. There is no way one cursory jaunt around this massive hotel will tell me everything I need to know. The only orientation training I’ve ever received was highly specific and route-based, meaning it did not teach me how to master new environments through discovery. I have never wandered in my life—at least, not willingly. Getting lost for fun, exploring, taking a look around … these aren’t my style. Meanwhile, every blind person around me seems to have a mystical sixth sense or, if they are as lost as I am, it doesn’t trouble them. The atmosphere is effervescent, and I feel like an intrusive rain cloud that has accidentally splattered into an unsuspecting sun puddle.
What the hell am I doing here? Who do I think I’m kidding? This was not made for people like me.
I really want to go home.

“You’re not alone. Also, have a tissue.”

It’s been a long day, though for the most part a pleasant one. I’ve listened to enthusiastic Microsoft employees laying out a new and encouraging direction for Windows 10 and its associated accessibility features. I’ve attended a fascinating presentation on disability services departments in academic institutions. I’ve even discovered that the GPS app, Nearby Explorer, has innovative new features to facilitate indoor navigation. My sighted friend gives me sighted guide when I need it, introducing me to what feels like half the world along the way. She makes me sound like someone worth knowing, and I try to keep my impostor syndrome on a short leash. To my shock and delight, people admit to reading my blog—and liking it!
(So, it’s not just my mom and five friends? Cool!)
But now I sit, curled on my bed, offering the less flattering bits of my life story to complete strangers. One of them is an endlessly patient blind O & M instructor. I’m afraid of O & M instructors. (Are you sensing a pattern yet?)
They listen to me ramble despairingly about the inadequate skills training I’ve received; how out of place I feel among more competent blind people; how I am convinced I’m the only one who has ever been this useless at my age; how I must be a uniquely embarrassing failure; and how I’m afraid I will never, ever be anything more than I am right at this moment. In my self-effacement, I remain oddly verbose.
My equally patient sighted friend quietly passes me another tissue, putting her arm around me. This only makes me cry harder.
Then, the two compassionate blind strangers in my hotel room explain that they, too, have struggled. The instructor tells me that I’m far from alone, that it is possible for me to achieve the skill level I desperately want, and that I need not be so willing to let “I’m afraid” be what stands between the life I want and the life I have. Besides, she points out, plenty of blind people are where I am; they just choose not to put a fine point on it. For other blind people out there, the activities I find easy may seem like insurmountable challenges, and vice versa.
“Most of the people who intimidate you by going on about how good their skills are probably have something to hide.”
“I guess that does make sense.”
I plumb deeper, describing all the gaps between the talented and competent professional I know myself to be, and the bumbling wreck my brain insists I am. I was never taught to cut a steak in a way that made sense to me. I hold utensils in an unconventional way because the “normal” way has always felt clumsy. Sometimes, I simply don’t leave the house because the anxiety of existing in my skin is too much.
And, to my genuine shock, I am not alone in any of these things.
“But … why isn’t anyone talking about this?”
“We’re all too busy impressing each other, of course.”
“But I thought I was, like … degenerate.”
“No! You can be better. You can go higher. But you’re by no means the only one.”
“But I’m scared.”
“So was I.”
I am telling strangers the most intimate, shameful pieces of my long-buried trauma. I am exposing, to myself and to people I barely know, why I am so terrified of other blind people. I am opening up to unknown quantities in a way I’ve never done, not even with my friends, my family, myself.
Least of all myself!
And I am not afraid.
I am embarrassed and bemused and a little curious about what it is about conferences that fills you with the insatiable need to connect …
But Good God, I am not afraid.

“Just trust yourself.”

My default state, especially when dealing with new experiences, is “What do I know?”
Several times throughout the four days I spend at CSUN, my friend and I take a wrong turn of some sort, and something in the back of my mind insists we’ve made a mistake, gone the wrong way, gotten mixed up somewhere. Each time, I ignore it.
Each time, I am right.
Each time, my friend grows more playfully exasperated.
“Meagan, you should really try trusting yourself. You know things!”
“I just usually assume I don’t. Like, what do I know about this place?”
“You have good instincts, though. You should listen to them.”
Slowly, tentatively, I begin cataloguing the many instances over the years when my gut has stirred itself to alert me of some poor decision or wrong turn. In every case, if someone I perceived to be more knowledgeable than me disagreed, I became silent at once. Now, after more than a decade of systematic suppression, I don’t even consider speaking up.
Of course other blind people know more than I do.
Of course sighted people know where they’re going.
Of course I’m unqualified. Inexpert. Silly.
I can’t control the fact that I’m clueless about most things.
Or is this a choice I’ve made, one I forgot to unmake?
Is anyone telling me I’m useless, or have I been doing that to myself all along?
Heavy thoughts for a languid California afternoon!
But then, this does seem to be the week for them.

“Yes, it’s scary; and yes, you’re going to do it.”

Thump. Whir. Thump. Whir. Thump.
“What the hell is that?”
“That’s a door.”
“I don’t think we have these where I’m from…”
As it turns out, automatic revolving doors are much more frightening than they sound. Revolving doors are irritating enough; having once been stuck in one, I feel personally qualified to judge. The automated feature brings a whole new level of nightmare fuel, though, especially when you don’t have a clear understanding of how it works. All I could hear was an ominous thumping sound as the door thwacked repeatedly into something as it went round and round at what I considered an alarming speed.
I was open to trying it out, particularly since I was filled with new resolve and I had an O & M instructor with me once again. However, when she described the procedure, which involved me “sticking [my] hand in there so the door can hit it,” I balked a wee bit.
By “balked,” I mean I stood there for what must have been ten minutes, coming up with all the reasons I definitely could not—would not—attempt this.
Finally, I gathered all my courage and approached the door, only to have it hit me squarely in the face.
A little shell-shocked, hiding treacherous tears, I retreated and tried to regroup. Meanwhile, the O & M instructor, her blind friend, and my sighted friend stood by just as patiently as before, acting as cheerleaders and accountability officers in equal measure. Surrounded by all the (positive) pressure, I went for it.
As I leaned heavily on the door and followed it in a dizzying circle, one of my blind companions ran along behind me, shouting jubilant encouragement. It was rather like going on your first water slide, with your proud elder sibling shooting along behind you, utterly thrilled on your behalf.
Such a small thing, really, going through a door. Ridiculous, even. I’m twenty-three, for heaven’s sake. I’m an employed, educated, mostly-functional adult.
But that day, that damn door was everything.

“One more time before you go?”

On the day I was due to leave for home, I tried to cram as much as I could into a few too-short hours. I visited the exhibit hall, demoing a Braille tablet and expressing horror at how loud those new displays are getting. (I compared the scrolling sound to a very angry spider.) I met more people, flexed my extrovert muscles, and even handed out a resume to an accessibility company that was hiring overseas. Just to cap off the quintessential California experience, I drank a hellishly expensive juice blend and caught a few more rays of sun.
Feeling brave, I attempted to travel a little more independently, and promised a handful of new acquaintances I’d connect with them so I could share my writing and social media knowledge. This was a huge step forward, since I find it almost impossible to speak highly of myself outside of job interviews and cover letters.
Just as we were poised to leave the hotel, my sighted friend suggested I truly conquer that automatic revolving door, just to prove to myself I could.
It was tricky, and I grew progressively more nervous as concerned sighted people crowded around, hindering more than helping.
But, dear readers, I did it.
Twice.
Willingly.
As I came through the door the second time, more joyful than I felt was socially acceptable, my friend literally jumped up and down with sheer happiness, celebrating so loudly I could hear her through the door.
Most people might not understand why this tiny feat was important to me, and few people would appreciate the symbolism of it.
But she got it.
And, for the umpteenth time that week, I remembered: whatever I reveal, whatever I admit to, however I might struggle, I am not alone.
I never was.
And you know what?
Neither are you.

Advertisements

“My Roommate Is Blind! Help!”

A few weeks before I was to move in with a sighted roommate, we met for coffee to discuss logistics. She seemed sanguine about the process, so I allowed myself to relax. Not until the conversation had begun to wind down did she drop this bombshell: her friends knew she was about to accept a blind roommate into her home, and they did not approve.
First came the predictable concerns: could a blind person hold up their end of household maintenance? Could blind people do much of anything at all? When I probed further, I unearthed more degrading questions: Would my sighted friend be capable of “caring for” me while dealing with her own issues, which were numerous at the time? Was she emotionally equipped to take on a disabled person on top of everything else on her plate? Would I take a toll on her mental health?
Stung, I reached out to fellow blind people to find out whether they’d encountered the same barriers. My Twitter mentions came alive, and I heard from people who had dealt with questions ranging from “How will you know if the house is clean?” to “Is it safe for blind people to cook unsupervised?” to “What if you leave the shower on constantly?” (I wish I were making this up.) Landlords, prospective roommates, and concerned hangers-on seemed content to judge blind people with limited evidence, causing embarrassment, anger, and major logistical issues for blind people seeking housing.
With guidance from many contributors, I’ve assembled a general guide for sighted people who are nervous about welcoming a visually impaired roommate. I’m not here to judge or condescend, so I hope you’ll read with an open mind, and share this with people who might need words of encouragement and advice.
Note: I use “blind” and “visually impaired” interchangeably throughout this post.

Don’t Panic

Whether you’re hitchhiking through the galaxy or preparing for a blind roommate, you must not panic, especially if you have little knowledge of the blind person in question. Until you’ve met them, you’ll be no more accurate a judge than if you were trying to guess what a sighted stranger would be like. Evaluate a blind roommate with the same criteria you’d use for a sighted one, and let that information guide your decisions. Never deny someone the opportunity to live with you just because they have a disability that makes you uncomfortable. You might inadvertently exclude stellar candidates!
External pressure from friends and family may be powerful, but don’t let it sway you. Unless they have intimate knowledge of your potential roommate, exercise caution. They may have your best interests at heart, but sound decision-making isn’t rooted in uninformed anxiety and misguided fear.

Ditch the Assumptions

Maybe you know a few blind people, and you assume this means you know what your blind roommate will be like. Perhaps you’ve never met a blind person, but you’ve seen a few on TV, or your friend has a friend whose cousin’s hairdresser’s nephew dated a blind person once, and fancies himself an authority. Whatever your experience with the blind community, remember that your roommate is as much an individual as you, and will have unique preferences, needs, and abilities.
If you take nothing else away from this post, please understand the importance of an assumption-free outlook. The overly-concerned sighted friends I referenced earlier let their assumptions run away with them, and concluded, without ever even meeting me, that I’d endanger my roommate’s mental health. This left me feeling scrutinized and unwelcome whenever they visited our apartment. I identified them as the people who viewed me as a walking, talking burden, which bled into everything I did while they were present. I doubt they were aware that I knew of their misgivings, and probably interpreted my skittish behavior as social awkwardness or unfriendliness.
Skill level, especially when it comes to household and mobility, varies widely among visually impaired people, as does visual acuity and the way that vision is used. One low-vision contributor pointed out that he can see people who are twenty feet away, but will likely run into ten obstacles on his way to that person, because that’s how his vision works. I can see a few colours and have some understanding of shape, but I’ll never read a label or notice visually that you’ve left a knife, blade up, lying in the sink. I’m a competent housekeeper but a hopeless cook; I know other blind people who can cook five-course meals and navigate transit like pros, but struggle to keep things tidy. Speak to your roommate about the specific tasks they can and cannot complete independently. Make sure it’s a respectful but candid conversation.

Make the Space Accessible

Fostering a blind-friendly household is neither complex nor demanding, but its exact form will differ depending on individual preferences. Not all blind people are particularly neurotic about organization, but nearly all of us depend on a reasonable level of predictability to function well in a common area. Keeping the environment consistent is the keystone of an accessible space. You are free to do what you will with your own space, but ensure that common areas are organized in a way you and your roommate consider efficient and manageable. Cooperation and communication are essential here: when one of my sighted roommates had moved my rice cooker for the fifth time in two months, I was reduced to crawling on my hands and knees to check the floor. Eventually, I discovered it tucked way under our kitchen table, in quite literally the last place I would ever have thought to look for it. I’m sure she was tired of receiving increasingly pointed texts asking where she’d placed this or that, but I was equally weary of having to ask at all. So, find a home for shared items, and stick to that system as much as possible. If you do move an object a substantial distance from its designated position, alert your roommate of the change, even if you think it’s insignificant to them. For people with low or no vision, an object moving even a few feet in any direction can throw us off completely, if only for a few moments.
The other adjustment you should anticipate is that some items, especially food packaging and appliances, will need to be made accessible for most visually impaired roommates. In my apartment, you’ll find transparent dots that adhere to the buttons on my microwave, allowing me to use the touch screen unassisted. When I lived in a place with private laundry access, I applied adhesive dots to make the washer and dryer easier to use. My then-roommate, who had far more vision, had to re-enable the singsong chirps the machines made, because these built-in audio cues enhanced accessibility for me. This was by far the largest sacrifice a roommate has ever had to make for me, and my needs are similar to most blind people I know. (Okay, so there was that time my roommate had to tell me I dropped an entire piece of pizza on the floor without noticing, but it was the cat’s fault, I swear.)
Your roommate may want to make similar adaptations, like a personalized labeling system. Usually, these are minor changes that won’t be intrusive or conspicuous, and don’t typically inconvenience sighted people. It’s up to your roommate to put these alterations into place, though they may need some assistance from you initially. In general, you don’t have to worry about an accessible space being an inefficient, complicated, or unlivable one. A blind-friendly household can be just as cozy, comfortable, and aesthetically pleasing as you could wish; it just takes a little time, patience, and ingenuity.
Finally, ask your roommate about their level of vision, so that you can understand what they can and can’t perceive in general terms. For example, if you accidentally leave a light on, will your roommate notice? Will excessively loud music or other distracting noises make it difficult for them to navigate safely? Could a plugged-in charging cable become a tripwire? If you combine laundry, can they sort unfamiliar clothing? Devise workarounds collaboratively, and try not to take it personally if your roommate has to remind you they can’t see. Many of us take this as a positive sign, in the sense that you’re not dwelling constantly on our disabilities. That’s definitely a win!

Embrace Job-Sharing

We’ve covered some of the ways you can help your blind roommate feel welcome and secure in your shared space. Now, we turn our focus toward what they can do for you. Should you expect blind roommates to contribute to the household in the same way a sighted roommate would?
Allow me to clamber to the highest available rooftop for this one: Yes! As I said, skill levels do vary, just like in the sighted world, so your roommate might be a great sweeper but awkward with a mop. They might be comfortable cleaning kitchens, but hesitant when cleaning bathrooms, particularly in situations when tactile feedback is limited by gloves and/or abrasive cleaning products. In my household, I avoid tasks like sweeping, because I am spatially clueless and tend to spread the dirt around in my clumsiness. I find scrubbing grimy bathtubs easy and highly tactile, though, so my partner handles the sweeping, and I handle the bathtub. When implemented cooperatively, job-sharing is an elegant solution, and tends to leave roommates feeling more egalitarian and less overwhelmed by household chores. Job-sharing is also an effective way to balance barriers relating to multiple disabilities, so that both roommates can be equally involved in household maintenance.
Oh, and if your potential blind roommate seems content to let you do all the work, that is an appropriate time to walk away, just as you would if the person were sighted.

Let Your Roommate Live

When I moved in with my very first sighted roommate, we were complete strangers to each other, matched by a program that was, in our case at least, woefully unintuitive. We discovered many points of incompatibility, for neither of us was particularly happy with the other, but her attitude toward disability was a constant wedge. Her friends would congregate in our minuscule kitchen nearly every night, quizzing me on my cooking and cleaning skills. I couldn’t put a frozen pizza in the microwave without fielding questions about how I handled every minor task without sight. I encourage questions, but I submit that rapid-fire interrogation should not take place while someone is visibly busy with tasks that require some measure of concentration. Later, when forced to be around a different roommate’s friends—the same ones who had declared me incompetent and troublesome before they’d even met me—I felt like I was trapped beneath a microscope, unable to escape unless I hid in my room for hours. While living with sighted people, I occasionally wished they could just turn off their eyes and give me a break. The feeling persists, even with my enormously respectful, partially-sighted partner. “Are you spying on me again?” has become our inside joke.
Be aware that your roommate may feel a slight imbalance, because you can see them, but they can’t see you. Respect their space as much as possible, leave their belongings alone unless you’ve asked permission to touch them, and reserve questions for times when your roommate is open to hearing them. Sometimes, as much as we may appreciate your curiosity, we just want to put our feet up and zone out. Chances are, we’ve just spent the whole day dealing with disability-related curiosity, and the last thing we feel like doing is walking straight into another question period when we get home.

Learn to Say No

No is your friend. No is not inherently mean or callous. There will be times when your blind roommate needs your help, and mostly, you’ll likely be more than willing to lend a hand. The majority of people I’ve lived with are naturally helpful, and I doubt you’ll have many occasions to deny assistance to your roommate. I applaud the instinct to be kind and say yes often, but never forget that you always have the right to say no.
Picture this: Your roommate is going grocery shopping, and would like you to help them find a few things. You often do your shopping together, but at this moment, you’re feeling ill, or busy studying, or about to head to work. Hell, maybe you’re just reading an engrossing book, and you’ve just gotten to the very best part. All of these scenarios allow you to simply say no. Unless you are deliberately bullying your roommate or breaking a previous commitment, they have no right whatsoever to argue. Presumably, you are both adults, which means you must respect each other’s time. Your roommate is not your charge. You are not their babysitter, and you do not owe them on-demand assistance.
Don’t misunderstand me: it’s healthy and normal to help your blind roommate. Ideally, they also help you when you’re in need. It’s what roommates do. I just want to make you aware that a harmful pattern can develop that places roommates in a hierarchical position where one is “the helped” and the other is “the helper.” That pattern is doubly insidious if you are romantically involved with your roommate. This is generally unsustainable, and a blind roommate who actively facilitates this dynamic is not on your side.
So, yes, you can say no to your disabled roommate now and again. It doesn’t make you a jerk, and living with a blind person is not a babysitting gig or charitable act. Indeed, many blind people would prefer the roommate relationship to be as mutual as possible, meaning the assistance and kindness flow both ways. Who knew?

Feel Better?

I really hope so! Now you know that blind and visually impaired roommates are a lot like sighted ones. They have varying skills and abilities, can ordinarily contribute to any household, and are no more likely to demand your time and energy than a sighted roommate would.
Bonus: they probably won’t destroy your mental health!
So, go ahead: move in with that blind person with confidence. If you enter the relationship with respect and openness, I predict excellent results. If it goes badly, come find me. I promise to say something comforting.
Good luck, and remember: don’t panic! Be curious, be open, be adventurous. Don’t be afraid.

Meet The Human Behind The Accessibility Request

My accessibility requests, and those of most people I know, are never made frivolously and rarely involve costly or difficult action. Despite the fact that accessible design typically benefits those who implement it (most of my requests take the form of “I want to give you my money but your online store or facility or campaign or social media post or software is inaccessible,”), not everyone reacts as calmly as I’d hope. The most common response, in my own experience at least, has been silence. Companies are particularly prone to ignoring access requests, either because staff doesn’t have the resources to deal with them or because accessibility is not prioritized. Individuals are nearly always willing to respond, though they may not do so favourably.
If there’s one thing I want the world to know about the average person making an access request, it’s that we are ordinary human beings trying to make life easier for ourselves and others. I’ve read one too many comments, from disabled and nondisabled people, complaining that we’re all getting spoiled these days, accustomed as we supposedly are to wielding our access rights like a club. There appear to be those who believe that we hysterical disabled people are intoxicated with our new position of relative influence, and are using it to harass innocent people and businesses, fueled by sadistic pleasure or a misplaced sense of victimhood.
Instead of attempting to refute this, I’ll describe what my latest access requests have looked like. You can judge for yourself whether I carry them out in a manner you’d consider acceptable. They may not reflect how all or even most disabled people request accessibility, but they should, at least, provide some perspective.
A few months ago, I wrote to a stranger about her fundraising campaign. I wanted to give her my financial support, but couldn’t find a description of the shirts she was selling. I wrestled with myself for hours before contacting her at all, afraid to bother or place undue strain on her. I composed three drafts of my message before sending it, ensuring there wasn’t a single note of urgency, discourtesy, or judgment. My heart pounded and my stomach churned with anxiety. I’d been eviscerated publicly for an access request once before, and even though I’d had positive experiences since that incident, once bitten, twice shy. I fretted incessantly, Just as I had over numerous other such requests, and couldn’t rest peacefully until I’d received a reply which, thank goodness, was exceedingly kind. Even though the experience went as smoothly as possible—including assurances that she appreciated my message and was glad I’d reached out—no part of it was enjoyable or empowering for me. The whole ordeal was emotionally exhausting, which reminded me why I rarely bother to report accessibility bugs unless they threaten my job performance.
When I emailed CBC Books about an inaccessible infographic, tweeted Success Magazine about an article I couldn’t read properly, asked Buffer about their accessibility features, I endured similar feelings of uncertainty. What if I was dismissed as difficult? What if I gained a reputation for being a demanding customer? Had I worded my messages politely enough to be acceptable but firmly enough to be taken seriously? Had I upset anyone? Would anyone write back? (For the curious: CBC Books and Buffer responded with admirable grace and did everything they could to help. Success Magazine didn’t get in touch.) In the past, I’d tried taking a slightly bolder tone, and had been chased off by complete strangers who had decided I was only making the accessibility suggestions to harass people and waste time. Disabled people have nothing better to do, right?
Over and over while making these requests, I caught myself apologizing—for being blind, for encountering issues, for asking that those issues be resolved. In essence, I was apologizing instinctively for existing, and for the mortal sin of wanting to use someone’s product or service. My feelings and manner remained free of entitlement or self-importance. I was just one more customer asking for help, but, all too mindful of society’s general attitude toward accessibility, I remained apologetic to a degree that might be comical if it weren’t so depressing. As you might imagine, I rather envy those disabled friends who make requests with a quiet dignity I have yet to emulate. They might be just as nervous as I am, but unlike me, they don’t spend much time agonizing over the details.
I wonder if the companies and individuals who have responded to me with silence, canned replies, or outright insults knew how much trepidation I felt while reaching out to them. The optimist in me wonders if they’d treat me differently if they had an inkling of how much courage it takes to address a person or entity I have no power to influence, asking that my needs be met. Perhaps these interactions would play out differently if the people behind the hurried dismissals and cutting rebukes framed my requests as roundabout ways of giving them my money, or my time, or my support. Surely a customer or user reporting any other type of issue would be treated far more kindly? Anyone who is going to great lengths to improve usability obviously wants to patronize your establishment, read your content, give you their money, raise funds for your cause, or share your information. Where’s the entitlement, the victimhood, the sadism in any of that?
I can handle silence when I make access requests. Being told there’s nothing that can be done is something I can bear. There are worse things than receiving the standard brush-off: “I’ll look into it.” I can even roll with the impatience—often clumsily-concealed–that creeps into people’s voices when I ask for help locating items in a store or filling out paperwork. I, too, live and work in this complicated world, and I know what it is to be restrained by policy, or bureaucracy, or a severe shortage of time. Not every request can be met, and not everyone is going to take that news well. I understand.
What I cannot handle graciously is the implication that my access needs are trivial. If I am accused of being too demanding, of wasting precious time, of taking up space reserved for more important people, I’m no longer willing to nod meekly and shuffle away. I cannot, in good conscience, pretend to agree when accessibility is treated like a silly new fad that will, with any luck, fade away, along with all the irritating people who ask about it.
I could list several reasons why people should care about accessibility, but it’s been done, and done by people much wiser and more eloquent than me. Instead, I’ll tell you how a well-handled access request makes me behave as a customer, user, reader, and funder. People and companies making an effort to attend to my requests have my loyalty. Someone who demonstrates they are sensitive to the needs of others earns a position in my good books. If the manager of a fundraising campaign agrees to improve usability for disabled people, they’re almost guaranteed to receive whatever money I can spare. A company that handles my requests with courtesy can count on my business, and I will make a special effort to promote them more widely than ever. Buffer, CBC, L’Occitane—these are examples of companies I’m proud to support not only because they make quality products, but because they have shown me, whether personally or generally, that they prioritize accessibility when it’s brought to their attention. This is even more pronounced with solopreneurs: Daryl Lang Jewelry will always be my go-to, not only because she makes beautiful things, but because she always uses clasps and designs that accommodate my moderate difficulty with fine motor skills.
Conversely, companies and individuals that don’t make accessibility part of their mission are less likely to receive my business or promotion, not out of spite, but because I can’t use what they offer. An inaccessible online store isn’t going to encourage a disabled person to shop there. An unusable piece of software will drive traffic to its competitors. This is, at its core, about business, not ethics or morals or ideologies.
I understand that access requests will not always be presented politely. There will be those who will come to you angry, impatient, at the end of a too-short tether—and they may or may not have valid reason for those emotions. Every now and again, someone will point out an accessibility issue with an imperious, contemptuous air. Those making access requests will not always present solutions that are within reach, especially for small businesses. Some of the people making them may not even have solutions to offer. And, yes, you may be hit with an unjust lawsuit by someone seeking to capitalize on existing accessibility laws for their own gain. All these things are possible.
More often than not, however, you’ll be dealing with someone who doesn’t enjoy asking for assistance and feels at least as awkward and inconvenienced as you do. They just want to move through the world with as much ease and independence as they can, and identifying barriers takes guts, especially when asking that those barriers be removed or mitigated. Further, most disabled people lead full, active lives, such that they have limited time to give accessibility feedback. The process takes time, even when the response is cooperative, and I regularly skip opportunities to report issues because I have several other pressing matters dividing my attention. We don’t all sit around thinking up new and clever ways to make people’s lives harder. Shocking, I know!
The lesson here? Life is very short indeed, but it’s not too short to be kind. Respond when you can, fix issues where possible, and always be compassionate. Just remember: we’re all on the same side.

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.

If A Blind Person Could Do It…

“If a blind person could do it, what’s your excuse?”
Here we go again.
Here is yet another nondisabled person using blindness, that infamous limiter, to boost motivation levels while simultaneously shaming any sighted person who has accomplished less than any given blind person.
My strong distaste for this specific motivational quote has long baffled me. I see ridiculous inspiration porn plastered all over the internet every day, and I don’t even have to look for it. Why, then, does the “what’s your excuse” line crawl so persistently under my skin? What is it about the “if a blind person could do it” reasoning that makes me feel both belittled and misrepresented? Why do I care what strangers use to get them out of bed in the morning?
Unpacking inspiration porn, as many in the disability community call it, is never enjoyable and often controversial. However well-reasoned your conclusions, someone is always going to chime in with a plea to stop all the negativity. Why begrudge someone the right to feel inspired and uplifted by you? It doesn’t cost you a thing.
Or does it?
Let’s begin with “if a blind person could do it” rhetoric, shall we? My interpretation of this statement is that anything a blind person does must be relatively easy, because we are so much more limited and incapable by default. For example, if a blind person can learn to ski, or play the piano, or cook a five-course meal, anyone can. According to the typical inspirational framework, the “if a blind person could do it” narrative depends upon disabled people being less-than: less capable, less talented, less accomplished. It also depends on us being more-than in one way: determined. Supposedly, our innate resilience is such that, despite our nearly-insurmountable challenges, we manage to get out of bed, go to the gym, hold down jobs, and raise families. Were it not for our remarkable courage and superhuman desire to succeed, we’d be sitting inconspicuously in a lonely corner weaving baskets and smiling vacantly at the wall.
It gets worse: This specious line assumes that any skills and talents developed and honed by disabled people are immaterial. If a blind person could do it, it’s possible for everyone, right? I spent four years in university learning how to communicate professionally and edit meticulously, but if I can do these things well, anyone can. If my blind friend spends years practicing her jewelry design craft, making use of existing talent and working hard to improve, none of those efforts matter because if she can design beautiful jewelry, anyone can. After my high school valedictorian speech, a sighted stranger turned to their companion and whispered “If she can learn to speak like that and accomplish so much…what’s my excuse? Why haven’t I achieved those things?” Hollow admiration when you deconstruct it, since the reason I had already accomplished as much as I had by high school graduation was a combination of gifts I was born with and hard work I’d put in to get where I was. The glaring flaw in this backhanded compliment leaves a very bitter taste behind. (Side note: I wasn’t a particularly outstanding student, but as we all know by now, expectations are lower when you’re me.)
Let us move along to the “so what’s your excuse” portion. The logic of this idea states that sighted people should use us as a way to stem the tide of excuses that frees them from everyday tasks like cleaning, cooking, and working out. If a blind person gets up every morning and gets these done, that must mean sighted people have no excuse at all, despite any challenges they might be facing. Maybe the nondisabled person struggling to motivate themselves has had less sleep than the blind person they’re using for emotional fuel. Perhaps that blind person is an early riser by nature. Could they be healthier? Could it be that they enjoy cooking and cleaning and exercise? Myriad explanations come to mind, and they all lead me to the same destination: tasks don’t diminish in meaning just because a blind person can do them and a sighted person can’t.
I’m reminded of some of my more brilliant blind friends—the ones who laughed at the words “can’t” and “never” and achieved things any sighted person would be immensely proud to accomplish. One of my friends has more or less mastered physiotherapy, cat breeding, and cooking. She has starred in a documentary, travelled Europe on her own, and is currently teaching herself to sew. At thirty, she has achieved more than most sighted seniors I know, and I don’t think anyone can honestly say that all of the skills she’s acquired are less impressive simply because she happens to be blind.
Other blind friends are published authors, admired public speakers, skilled carers, talented designers, and exemplary instructors. They attain great things because they have the necessary passion, desire, and talent, not because great things aren’t really as difficult as they seem. I would never allow anyone to cheapen the hard work and exceptional talents of my disabled friends on the basis that anything a disabled person does mustn’t be all that hard.
What is your excuse, nondisabled person? I certainly hope it’s something reasonable like being too tired, or too busy, or too preoccupied with living your life.
I hope you motivate yourself by being authentically and respectfully inspired by those around you, for the right reasons. I hope you motivate yourself with passion, desire, hard work, and discipline. I hope you chase your dreams because you desperately want to, and not because some blind person did it first and inadvertently shamed you into it. I hope you recognize the accomplishments of disabled people as important and impressive because they are, and not because disabled people don’t normally succeed. Most of all, I hope you admire disabled people not for getting out of bed, or cooking a basic meal, or doing what all grown-ups are expected to do. I hope you admire us for our unique, personal, hard-won achievements, and nothing less.

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.

The Sanctity Of Vision

There appears to be consensus among humankind that blindness is an objectively undesirable fate. I’d tend to agree, since while I live a full, satisfying life with blindness, it’s not a circumstance I’d necessarily have chosen for myself if someone had given me a say. I grew up in the shadow of pity, outdated ideas, and low expectations. More than once, strangers have insisted they’d be completely incapacitated if they lost their sight, even temporarily.
Not until adulthood did I comprehend society’s primal aversion to blindness. It goes beyond the ineffable fear of being disabled, straying into a territory governed more by bone-deep horror than reasonable discomfort. Of course most people wouldn’t welcome the thought of becoming disabled. Sight is a primary source for sensory input, so people’s instinctive panic when contemplating blindness, even as an abstract concept, falls within the lines of what I’d consider logical.
What I struggle to understand is the extent to which so many people, even medical professionals, avoid blindness at all costs. After a few people had expressed, to my face, the opinion that they’d rather resort to suicide than live without sight, I began to realize that vision and quality of life are inextricably linked in ways I, a person who has been visually impaired from birth, cannot possibly imagine. As it turns out, while I’m out there enjoying my life, people I pass on the street are thinking of me as someone who isn’t really living at all.
The idea shed its abstract quality when I met my dear friend Alicia. As an infant, Alicia had her eyes removed to save her from an aggressive cancer that, if left unchecked, is often fatal. Eye removal, while drastic, seems like the best possible choice—maybe the only choice—when confronted with the possibility of death, but not everyone saw it that way. Alicia’s journey through cancer and blindness has taught me that far more than the sanctity of life, the sanctity of vision is king.
This is her powerful story, in her own words. I hope you will read it, put aside primitive assumptions, and re-evaluate the way you perceive those of us who don’t have vision but who do have life, in all its richness.


Off and on while I was growing up, I heard the claim that society fears blindness even more than cancer. I think the first time I heard this phrase, it was based on some study that had been done–a national survey of some kind, but I was young enough at the time that I didn’t inquire into insignificant details such as sources or methodologies. My youth was only part of the reason I disregarded the information, though. Just as strong was the fact that I found this statement unbelievable. How could people fear blindness, something which can be lived with, over cancer, something that can so easily take one’s life away? Impossible…Or so I thought.
My rude awakening has come in various forms over the years. The first incident occurred in 2002. I had been considering having a tubal ligation, because I already knew I did not want children. I certainly did not want to pass retinoblastoma, the cancer I was born with, on to a child. At an appointment with my ocularist, he told me about a baby undergoing treatment for this same cancer. The doctors knew that the amounts of radiation being given were likely causing brain damage to this child, but both they and the parents refused to consider the option of removing the child’s eyes. Risking brain damage, not to mention leaving cancer in an infant’s body, all because the doctors and parents feared blindness so much? I was devastated. I cried for several hours, and made up my mind that very day that I would have my tubes tied as soon as possible. There was no way I was having any child of mine treated in a medical system that valued vision over life itself. I don’t think I realized until that day the tremendous service my parents had done for me in making the choice they did to have both of my eyes removed as an infant rather than leave cancer in my body. My respect and gratitude to them for that choice increased by leaps and bounds that day. Only then did I learn that they had actually had to push my medical team to do this. I always thought it had been the recommended option, because it was the one that made sense and posed the least risk to my life. Apparently it was not, and my parents had to lay down the law as my guardians for this to be done.
After my tubal ligation, this issue moved to the back of my mind until 2015, when I attended a mental health First Aid training session. The trainees were split into groups. Each group was given a list of traumatic events that a person might experience in life, and asked to rank them from least to most catastrophic. Two of the items on this list included being diagnosed with cancer, and vision loss. As the results came in, every single group ranked vision loss as the most catastrophic event a person could experience, with cancer diagnosis placed several items down the list. Once again I was shocked, especially given that many of the people in the room knew me personally. Did they truly not understand that blindness could be lived with, and lived with well? Did they really pity me that much, or believe my life was that terrible? I asked to address the room, and made my case for why I truly did not understand these rankings. I hope I gave people some food for thought, but I’ll never know for sure.
People’s tendency to value vision over life has come to my attention yet a third time in the last few weeks. A dear friend of mine has been diagnosed with a different kind of cancer of the eye, ocular melanoma. The tumor, which is particularly large, rests behind and within her eye. Thankfully it has not yet metastasized, but if it were to do so, the most common place for this particular cancer to spread is the liver. As most people know, short of Divine intervention, once it reaches that organ, a person’s days are numbered. The options for my friend were to radiate the tumor and attempt to save the eye, or to have both the eye and the cancer removed in one surgery, with follow-up appointments over the years to make sure she remains cancer-free. She spoke with two nationally renowned cancer hospitals, and got two very different opinions. One cancer hospital said they would outright refuse to remove the eye, considering this option medical malpractice. Again, I was shocked, though by this time, I don’t know why. It wasn’t like this information was new to me. Removing cancer from a person’s body is medical malpractice, but leaving it inside the body in order to keep an eye is not? The other cancer hospital was forthright with my friend regarding the risks and side effects of radiation, even though it has advanced in precision and effectiveness over the years. This hospital’s staff was honest about the fact that even with this option, there is only a 20 to 30 percent chance of saving the eye. After much thought and prayer, my friend felt her best option is to have the eye, and thus the cancer, removed. Sadly, she has had to push her medical team to accept her decision. At least she is an adult, and is able to advocate for herself and choose what should be done to her body. Children born with cancer do not have this choice, and must rely on the discretion of a medical community that tells people that blindness is a much worse fate than cancer and its treatment.
This philosophy continues to stagger and upset me today as much as it did when I first became aware of it 15 years ago. What is it about our society that makes people fear blindness over the potential loss of life? What can we as people who are blind do to change these perceptions? Is there, in fact, anything we can do? Will this philosophy ever change? These questions will likely remain unanswerable. For my part, I can only do what is within my sphere of influence. In the case of the friend mentioned above, my example has been part of what helped her realize that vision loss could in fact be lived with, and that she can and will adapt. If I can help one person know this, then perhaps my own experiences are not in vain. I just wish there were more I could do to show the medical community this truth. Do I wish blindness on a person? Absolutely not. There are days when it is extremely hard to deal with, when I curse the lack of accessibility, or the transportation issues it causes. There are days I am sad not to see colours, or pick up a print book and read it. However, at least I am alive to have these problems.
All things considered, I would much rather have life, with the inconveniences of blindness, than no life at all.