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.

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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.

“Wait…You Work Here?”

About a month ago, I was charged with covering reception at my workplace. We were severely short-staffed that day, but in small non-profits, everyone pitches in. Our clients are used to seeing unfamiliar staff members covering the desk, and it’s common enough that it never raises eyebrows. When I sat behind the desk, however, everything changed.
Instead of asking me questions about how to send a fax or print in colour, clients asked, often openly and a little confusedly, “Do you…work here?” Many of them avoided the reception desk altogether, knowingly violating protocol and striding past the desk without so much as a by-your-leave. They’d quiz other coworkers milling about in the reception area, even when those coworkers encouraged clients to speak to me directly. At times when I managed to engage with them and ask them what they needed, they expressed a preference for the intern who had been with us less than a month and knew maybe a tenth of what I did about how things are done. Although the intern was nervous and visibly uncomfortable, clients chose to wait and interact with her rather than dealing with a long-term staff member who had a visible disability. After only one short hour in reception, I realized that having worked at this non-profit for almost a year, sitting confidently behind the desk, asking people directly if I could assist them, and being dressed as professionally as anyone else working there—none of it mattered. People just assumed I was either incompetent or not an employee at all. (I don’t know whether they believe my workplace routinely allows non-employees to sit behind the desk for fun. I didn’t ask.)
In a move that was a little twisted even by the cruel universe’s usual standards, I was stopped in my apartment building a few days later by a fellow tenant I’d never spoken to before. I was clearly in a rush, walking briskly, and doing my best to ensure I wouldn’t miss my ride to work. Ignoring every signal I was blasting frantically to the world at large, this inquisitive woman started to pepper me with questions.
“Hi. Where are you going today? I see you leave here most days. Always wondered where you go.”
“I’m heading to work.”
“You work?!”
“Yes, yes I do.”
“Like, every day?”
“Five days a week.”
“Where?”
“At a small non-profit.”
“Oh! Which one?”
The interrogation probably would have continued, but I was able to extricate myself by pleading lateness and managed to escape before snapping at her with much more irritation than she’d have deserved. It’s not a crime to ask questions, and I’m not one of those who will eviscerate someone for daring to try it, but having strangers ask you where you go every day and the exact location of your workplace seems a little dodgy, disability or no.
As with almost every other disappointing situation I’ve experienced because of disability, I soon realized I was far from alone. While discussing the matter with others, I heard several accounts of blind people being mistaken for non-employees who had strayed into forbidden areas, or who were merely assumed incapable on sight. Sighted people are used to seeing us sitting at a piano or acting in feel-good, promotional videos, but a blind person sitting at a desk or standing behind a counter seems to be a bit more of a leap for them. Fellow blogger Blindbeader has been stopped twice now at her new workplace, where she was warned by strangers that she was going the wrong way and was trying to enter a secure area. Only when she flashed her security badge and explained she was an employee did the people in question re-evaluate their assumptions. Apparently, even a professionally-dressed, confident-looking blind person looks lost and out of place in a work environment, at least to some people out there.
This type of unconscious discrimination can have more serious consequences than mild annoyance and inconvenience. While working as an intake assistant at CNIB, I conducted most of my consultations with clients by phone, so they readily listened to and respected my advice without question. When they’d walk into my office and meet me for the first time, though, some of them, even people who were going blind themselves, would do an astonished double-take, hard pressed to believe the helpful, knowledgeable woman they’d spoken to on the phone was blind. My partner, who has a moderate eye condition that is sometimes visible, was frequently discriminated against at work in retail and food service fields, despite his capabilities. While working for a fast food restaurant, coworkers were quick to blame any mistakes on “the blind guy,” and management was a little too quick to believe them. When he worked at a computer repair shop, customers would request to work with a different technician, or complain about him to his coworkers, because they thought it glaringly inappropriate for a person with even mild vision issues to be employed there. Their complaints are perplexing to me, since his vision issues are minor enough that he doesn’t usually use accessible devices and never uses mobility aids. He’ll never drive, it’s true, but he can certainly repair your computer and even read your screen without help. To this day, reliving these experiences makes him uncomfortable and anxious, and it’s easy enough to understand why. Hard as we work to convince interviewers and supervisors we deserve to work alongside everyone else, we still have to face the hurdles put in place by public and peer perceptions.
I didn’t realize how prevalent this casual discrimination actually was until I entered the workforce at age eighteen. At one point, while trying to comfort a distraught mother whose teenage daughter had just gone blind, I found myself explaining to her that, no, her daughter’s life was not irrevocably ruined. Yes, she’d be able to go to school, and have a career, and be successful. In a moment of weakness for which I don’t blame her one bit, she burst out: “How would you know? You’re just saying that!”
“Actually, Ma’am,” I said as gently as I could, “I’m blind, too. I’m getting a degree, and I have good career prospects. Many of my blind friends are very successful in their fields. It’ll be hard, no question, but your daughter’s going to be okay.”
So, if there are those out there who honestly believe blind people are destined for lives spent at home being cared for by our unfortunate families, and cannot aspire to anything higher, it makes sense that they’d react oddly when confronted with blind professionals. All manner of superficial attributes make people seem more or less trustworthy and credible, right down to appearance and voice. Why, then, should it be shocking that a visible disability would, however unjustly, decrease a person’s credibility in a stranger’s eyes? It’s not fair, and it needs to be combatted, but it does make a kind of sense. At least, it’s no less illogical than thinking tall, deep-voiced people are more credible than short, higher-voiced people with the same qualifications and credentials. The world is a vastly illogical place.
My solution to this issue mirrors the one I default to in so many other cases: education, education, education. The more blind professionals are seen out in the world, the more accustomed to us society will become. People’s minds do change, and I know a few who, since having met me, have altered their perspectives on a great many things. No more would they stop a blind person in a hallway and automatically presume they don’t belong there. No longer would they avoid seeking help from one of us if they found us behind an information desk, or repairing their computers in a shop, or cooking their food in a restaurant.
As usual, the way is long, and slow, and sometimes painful—but it is, I think, the only way we have.

Let Me Be Generous

Earlier this week, a particularly trying driver took me to work. Exhausted from too little sleep and running dangerously low on patience, I listened as he prattled on about his “amazing” blind friend, with whom I must be utterly fascinated since all blind people are endlessly interested in each other, right? I explained how my phone’s GPS allowed me to follow along with the route, and indulged him when he asked, at least three times, “Where does it say we are now? … Now? …How about now? … Amazing!”
For this man, in fact, everything about me was amazing, from my university degree (a standard bachelor’s, nothing spectacular), to my full-time job, right down to the fact that I don’t live with my mother. He concluded that, like the afore-mentioned blind friend, I was a winning combination of blessed and, well, amazing. Due to my acute frustration and sleep deprivation, I was unable to appreciate his good nature and kindness, which I would certainly have noticed on an ordinary day.
The last straw came when we pulled up to my destination. As he assisted me with the debit machine, he skipped right past the “Tip Option” screen without asking me if I’d like to tip. Aware that cab drivers often do this instinctively—to the point where it stands out when they don’t try it—I had previously asked that he please stop at the tip screen. Ignoring my explicit instructions, he breezed right past it, and steadfastly refused to cancel and re-enter the transaction. Disregarding direct instructions when I’m letting someone else act as my eyes will inspire pique on the best days, and this was not my best day. By this point, the lack of caffeine and goodwill in my veins signaled that I should let this one slide. So, I let him go on his way, no doubt convinced he’d done me a kindness and blissfully ignorant of my annoyance.
Refusing to allow disabled people to express generosity is dismayingly normalized. Judging by the many conversations I’ve had with other disabled people on the subject, I’m far from the only one to find attempts at everyday generosity being rebuffed, sometimes forcefully, by all kinds of people. Even those asking for money on the street will sometimes push our money away, as though taking funds from disabled people would be a violation of their personal moral codes. Apparently, being homeless is still better than having a disability, and taking money from disadvantaged, less-fortunate souls is practically criminal. Who would accept gifts from such abjectly pitiable people, anyway?
I’m all too familiar with the prevailing narrative on disability in much of the world: anyone with a disability is disadvantaged, pitiful, and even cursed. People break the mould all the time, especially when they are accomplished enough to feature in inspiration-laden news stories, but no matter how successful we become, we are perceived to be worse off than nearly anyone else. The cab driver who laments he does not have enough money to feed his children will resolutely resist my offers of a tip I would otherwise spend on an overpriced latte I certainly don’t need. A person who does not have a place to sleep, food, or even a clean blanket is uncomfortable receiving support from me, even though I have every appearance of someone who is solvent, if not extravagantly wealthy.
There is a tiny nugget of truth in this stereotype, as with so many others. high unemployment rates, coupled with the extortionate costs of assistive devices and technology, mean many disabled people are indeed struggling financially. Some of us have incomes that are supplemented by government benefits, but most of us, myself included, are supporting ourselves without help. At the moment, my full-time job and freelance career are enough to give me a stable home, a nutritious diet, and the ability to afford the occasional luxury without compromising my student loan payments. That’s more than many of my nondisabled peers can say.
As with so many other disability-related issues, the problem runs more deeply than strangers who won’t take my money. I’ve written in the past about friends and family who, whether consciously or otherwise, shy away from allowing me to be generous. Whether they’re telling me not to help with difficult tasks or claiming they don’t want to burden me, even those closest to me are under the impression that I either have nothing to offer them, or at least should not be expected to give what I can. Having been raised in an extraordinarily open-hearted, unstinting community, the inability to participate in all the generosity around me was and continues to be a blow to my pride and spirit. My personality is characterized by a powerful need to give, and give lavishly, so any barrier that keeps me from doing so is emotionally devastating. While I do have people in my life who feel free to lean on me for support and will ask unhesitatingly for assistance whenever it’s needed, many others seem sheepish or even vaguely shocked at the very thought. It’s as though a voice inside them is saying, with not a little surprise, “You mean…*she* might be able to help *me* out? But that’s not how it’s supposed to go!”
I hope that, in time, strangers and friends will realize it’s possible to move beyond the paradigm where I am the helped and never the helper. I envision a society in which a disabled person’s tip or gift is seen as standard generosity and accepted guiltlessly. The world will be a slightly better, kinder place when people are open to the idea of a disabled person as more than a problem waiting to be solved or a good deed waiting to be done. In this, as in all things, I want to be no more and no less than everyone else.
Let me be generous. I have a lot to give.