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 I grew up in the shadow of pity, outdated ideas, and low expectations.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.

Advertisements

“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.

Dear Facebook: We Need To Talk

Facebook, honey, we need to talk. Seriously. This very instant.

I think I’ve been a good and faithful servant—I mean, user. I spend lots of time with you, usually every day, and have done so for several years. I have continued to check in with you daily despite the useless updates, the bewildering user interfaces, the sudden and unsettling amendments to your privacy statements—even your silly app, which enjoys draining my phone’s battery and sucking down data as though it were water in the desert. Through all of your confusing, outrageous shenanigans, I have done my best to navigate your bizarre design and even tolerated your overabundant ads with minimal grumbling. (I really, really enjoy grumbling, so please acknowledge the magnitude of my sacrifice. … Are you acknowledging? … Good, thank you.) In fact, Facebook, I love you so dearly and so faithfully that part of my current career depends rather heavily on interacting with you. I’m a social media specialist, Facebook, which means I have to work with you—and like it!
But, dear Facebook, you’ve shown me time and time again that you never really appreciated me. Yes, yes, you’re “free and always will be,” I know. I get it. I’m the user, not the customer. I’m the product. You sell my oh-so-exciting online life for far more than it ought to be worth, just so I can skip intrusive “suggested” posts to get to the good stuff. It’s business, this is the new normal—blah blah blah.
Still, darling, you’d think I might be worth almost enough to you, as a loyal user and frequent poster, to warrant a reasonably accessible environment. You see, Facebook dear, my eyes don’t work, and as such, you are an unpredictable and cruel companion.
One day, some complicated function works, and the next day you’ve broken it—again. Your much-lauded image description software—you know, that feature that meant we blind people would be able to “see” pictures—thinks dogs are cats and cats are dogs and any woman wearing white is a bride. It invents children that aren’t there and sometimes throws in an extra person, just to keep us all on our toes.
(“You got married? Again?”
“No no, I’m just wearing a white shirt. As you were.”)

I’ve lived in valleys of despair and soared to dizzying peaks of hope, perhaps a little naively. When you kept your mobile site clean and relatively accessible, I rejoiced. Alas, I rejoiced too soon: many of the features I wanted to use simply don’t work. Back to the sluggish, semi-inaccessible and wholly-infuriating desktop site I go, then.
I sang your praises when you introduced artificially intelligent software that would describe images, and the publicity it generated was very exciting indeed! Back to earth I drifted when I realized that not only was it laughably unreliable, but you were actually making sighted people think their days of describing pictures (very short-lived—I’d just gotten people to start doing it) were over. So, thanks and all, but please stop telling sighted people they don’t have to describe their pictures, cuz they do, maybe more than ever unless they want me to congratulate them on the new cat-dog or ask how married life is treating them.
I reveled in the simplicity of your Messenger app, reasoning that if you were going to get us all to use it by brute force if necessary, it may as well work. But, Facebook, you managed to break even that, so that I can’t scroll with any efficiency and am forced to ignore a whole lot of pointless nonsense on my cluttered screen.

This is not healthy, Facebook. At this point, I am staying for the good times, as they say. Each time you break accessibility or introduce a troublesome new feature, I grit my teeth and roll with the punches. When I struggle to perform basic aspects of my job because something on your end is mysteriously broken again, I smile through the pain and soldier on. If time is short and I don’t have an hour to fiddle with two versions of a website and an app, I call a sighted person over to help, silently cursing my dependency.

Meanwhile, you announce your access team with much fanfare and profess your commitment. You whisper (or shout, as the case may be) reassurances into my weary ear, promising that all will be well.

But you know what, Facebook? I don’t believe you.

Do I expect any of this to move you? No, of course not. You have me in a corner, and I must continue to shoulder the constant issues you create. My job and social life depend upon us getting along.
That said, dearest Facebook, I don’t have to like it.
And you know what? I don’t have to like you, either.
There, I said it. I love you, but I don’t really like you anymore.

Put your money where your mouth is. Use the same level of force to direct your accessibility team as you do to ensure that customers—I mean, users—use your ridiculous apps. If you put a fraction of the effort you pour into, say, the like button into accessibility, darling, we’d have a very different relationship, you and I.

So, Facebook, I ask only this. Until you make real, lasting strides in the direction of genuine usability and accessibility, please don’t pretend you care, because I’m done pretending I believe you.

Yours, very grudgingly,
A girl with broken eyes (and a broken heart)

I Miss My Bubble

There was a time, several years before I traded small-town life for my bustling urban lifestyle, when I believed the world was an essentially happy place in which to live. Ableism was a term I’d never heard, and even though I faced and recognized discrimination occasionally, it seemed far too rare to form a pattern. My community was a generally accepting, accommodating one, and I expected the rest of the world to reflect it. If I’d begun a blog back then, it would have adopted a tone that suggested most people with disabilities had little right to complain. Life wasn’t so bad, was it? My personal experiences certainly didn’t indicate that everything was terrible, and I, cozy in my cocoon, couldn’t understand what all the fuss was about. If you’d asked me about my place in the disability community, I’d have shrugged and said, “What community?” Blind people, in my limited view, were a largely grumpy lot, and I didn’t think they really had the right to be so.
Today, however, I’m as grumpy and disgruntled as just about everyone else. I’m not a combative or pessimistic person, but even I can’t escape stabs of despair and intense annoyance when someone congratulates me for living on my own, or navigating my workplace, or behaving as any woman my age would be expected to behave. I cringe when people try to explain my own disability to me. Ignorant comments on social media set me ablaze, even though I know it’s not productive. I experience regular urges to indulge in a primal scream or three. In essence, I find myself in a perpetual state of annoyance. Why must the able population be so silly? Discriminatory? Ignorant? Rude? Disrespectful? Why?
And so, burdened with this tiresome emotional landscape, I find myself longing for a simpler time, clichéd as that may sound. My soul yearns for a time when my attitude toward sighted people was almost universally positive. I excused even the most egregious behaviour in the name of understanding and empathy. I overlooked inaccurate and damaging viewpoints because I “get where they’re coming from.” I remained astonishingly cordial when confronted with statements like “I don’t see how you’ll ever get married and raise kids…” or “It’s a pity you’re blind, but at least you can sing…” and “How can you work?” I simply did not realize how poisonous these ideas could be. Mostly, I let them roll off my back, and since grumbling about them wasn’t encouraged, I shoved the hurt I did feel into a cobwebby corner where uncomfortable feelings go to die.
Now, I’m forced to re-evaluate my worldview. Much as I’d like to remain in my comforting bubble, I encounter too many first-hand obstacles to pretend all is well any longer. I’m learning, quickly but grudgingly, that yes: it really is that bad. No, living with a disability isn’t nearly as arduous as people imagine, but it still comes with a whole host of challenges. Further, I’m also learning that just because I haven’t come across a particular issue doesn’t mean it’s unworthy of consideration. The fact is, I’ve been lucky, and insisting that disabled people should take a chill pill is akin to ignoring my own reality, and theirs.
I’d be remiss if I didn’t mention the hysteria and unnecessary combativeness I see in the disabled community, of course. Some people seem to live for the chance to rant passionately about every imperfect able person they meet. It seems as though some of us have turned defensiveness into a learned behaviour, such that it’s become a knee-jerk reaction. Any attempts to bring empathy and nuance into the conversation are dismissed, sometimes with a vehemence I can’t imagine having the energy to muster on my best days. Our complaints are usually justified, but many of us, including me, are guilty of jumping to conclusions and making life more difficult than it needs to be. This is why I work so hard to cultivate an ultimately kind, measured perspective in my writing and my everyday life. To do otherwise goes against everything I am.
Even so, there is plenty to be upset about, and some days I don’t feel equipped to handle it all. A frightening brittleness accompanies me far too often, so that I feel as though I will either cry or snap if one more person grabs me without my permission or sulks when I turn down their assistance. I’m not sure when I became so volatile, but while courtesy and reason tend to win the furious battle inside my head, I expend far too much energy in the process.
I miss my bubble. I am tired and anxious and insufferably irritable, and I hate it. One of the things I’m unable to stomach is being in a bad mood for too long. Grumpiness and outrage just don’t suit me. I miss being able to shrug off even the nastiest comments and laugh at everything else. Surely there is a middle ground between priming myself for misery and retreating to a safe but unhealthy state of blissful ignorance. There has to be a way to pick my battles without feeling so desperately conflicted and exhausted.
I’m going to be okay. I know, from watching other disabled people, that time will bring growth, patience and security. Eventually, managing all of these burdens will become second nature, if not easy. I know I will find a place of peace. While I wait, however, I find myself looking wistfully backward.
I miss my bubble, but it’s not where I belong. One day, my heart will catch up with my mind. Until then, universe, grant me patience.

The Freedom To Read

On February 26, Canadians will begin celebrating Freedom to Read Week, which reminds us of the danger of censorship and the importance of intellectual liberty for everyone. It’s a time to reflect on the harm done by banning books and restricting access to controversial ideas. I’m a big fan of this occasion, because I routinely seek out viewpoints that make me uncomfortable. Forcing myself to ask hard questions can be unpleasant, but frequent soul-searching helps me keep my mind open and my opinions balanced.
As dear as this cause is to my heart, I’ve found that the phrase “freedom to read” means something different to me—something deeply personal and specific to my disability. You see, much of my childhood and young adulthood was made less fulfilling because I did not have total freedom to read. Braille books were difficult to come by, especially rare ones, and audio books used to be prohibitively expensive. Later, when a mix of talking books and access to the internet helped me nourish the hungry bookworm that has always lived inside me, I realized just how difficult it had been to live in a world where I missed out on so much while my peers dealt with no such limitations. Imagine waltzing into a library or bookstore and just…reading, whatever you want, whenever you want! This is a privilege most able people will never have to think twice about; it’s automatic and taken for granted by the majority of people. For me, though, it was a novel concept.
I couldn’t experience the pleasure of binge-reading; my supply of literature was far too inconsistent for that. I often curbed my urge to read everything in sight, knowing that if I didn’t ration my reading material, I’d regret it later. By the time I was in ninth grade, I’d literally read every book the nearest resource centre had to offer, which I found devastating. The CNIB library finally saved me, but until then I felt intense deprivation.
Reading, more than any other activity, gives me indescribable joy. Books are my refuge, sort of like a friend who will never desert me. Reading is how I relax. It’s how I learn. It’s how I entertain myself and expand my horizons. It’s an invaluable educational tool, because I get much less out of videos and am quite introverted. It’s my chief source of comfort and solace. Whenever life gets a little too complicated, I retreat to my books, though I read almost as much when times are good. I feel giddy at the mere thought of finding someone new to talk books with. In short, I cannot imagine a life without reading.
There are other times when my freedom to read is compromised. I can’t usually read signs, billboards, posters and other visual materials. Taking photos of objects using specialized software is one of the only ways to identify labels and read instructions (though instructions are commonly posted online now, which helps an immeasurable amount). If my portable scanner isn’t handy, I sometimes need documents in hard copy to be read aloud to me. I can’t normally read paperwork I’m supposed to fill out, meaning strangers are privy to sensitive information and must spend time they don’t have assisting me. I can’t use most debit machines independently. The list goes on.
In this, as in so many other situations, the internet has contributed to a more positive reading experience. I can binge-read to my heart’s content. I can be very selective about what I choose to read. I have access to almost all reading material in existence, whether it’s rare or common. For the most part, things are next door to perfect.
I want everyone to know how vital it is that people with disabilities be allowed to read as freely as they please. They have the right to be exposed to new ideas and a variety of stories, just like able people. The hardest part about being a very young child was my inability to read. Waiting around for a grownup to take the time was excruciating, and even now, when I have to be read to, I feel like a child. I don’t want future blind people to be treated like children. I never want them to be compelled to read books they don’t enjoy because there are no other options. I am passionate about literacy, and the right of every person around the world to benefit from it. (This is why I become incandescent with rage whenever people suggest that braille has lost its relevance.) Literacy was my ticket to an equal education, and it is the bread and butter of my career. Navigating an educational system that believed I was “lucky to go to school at all” could only be accomplished by proving I was a good student, for which reading was key.
If we can all have the freedom to read, I think the world will be a much better place.

Inclusion For All! (Unless You’re Disabled)

Yesterday, I went through a fascinating but painful experience on Twitter. A very popular activist posted an important piece of information about the women’s march, saying she wanted it to reach as many people as possible and encouraging people to share far and wide. As it turns out, these were pretty words: while she did host a plain-text version of the information on her website, the tweet contained an inaccessible image with the text inside. This makes it impossible for screen readers to interpret the contents of the image, leaving out anyone with too little vision to read the message without sighted help. What is more, this woman placed a URL to the accessible version inside the inaccessible image, completely defeating the purpose of including it at all!
Wanting to make the information easier to access, another disability activist asked that the original poster tweet the URl on its own, and stressed the importance of accommodating screen readers, particularly since the tweet was meant to be available to everyone. If you want something shared widely, then including as many people as possible makes sense.
I joined the conversation (I’m a glutton for punishment), pointing out that Twitter has a handy alt text feature that makes it possible and easy to describe images. This feature would have been perfect for making sure the URL was readable for everyone, including blind screen reader users. I did not expect immediate action; I didn’t even expect a response at all. I just wanted to raise awareness about an option that is often overlooked and that would save people so much time and effort.
What did I get for my trouble? Well, nothing encouraging. Two of this activist’s followers jumped into my Twitter mentions to tell me the following.
• I had no right to “harass” someone who is doing her best.
• I was devaluing the tireless, exhausting work she was doing.
• I should go find something “real” to complain about.
• The only reason I was speaking up was that I was “bored with my life” and had nothing better to do. (Yes, because a full-time job, a social life, a relationship, and a budding freelance career mean I’m ever so bored and useless. I adore being judged based on nothing at all.)
• I should stop attacking people on Twitter.

Let’s break this down. A person (whose followers presumably agree with her) professes commitment to inclusiveness. Intersectionality, a buzzword many on the far left are fond of using, only applies to some groups. Disability is not included in that group, which is typical of a lot of feminist, left-wing activism; we’re often invisible to the loudest, proudest voices. Since I am disabled, I must be a bored, unproductive person. Asking for access is considered harassment by default, even when it’s a fairly polite, solitary tweet devoid of name-calling and anger. My concerns aren’t “real” or meaningful. Inclusion doesn’t include me, or other disabled people, and sharing far and wide means restricting your audience, even after you’re told how to remedy the issue. Finally, harassment doesn’t go both ways: tearing a stranger to pieces and continuing to tweet them after I’ve said I’m done with the conversation is acceptable, but sending one informational tweet is not.
I hate hypocrisy, and it’s inexpressibly devastating to come across it in the very communities that are supposed to support and include minorities. Why is disability so often absent from these people’s minds, and why, when it’s brought to their attention, is it so callously and vehemently dismissed? Why don’t we count?
I try to be patient with people. I try not to live a life of constant rage and victimhood. I realize that baby steps are par for the course and our rights and humanity won’t be fully recognized overnight. Education is vital and not every activist should be expected to have intimate knowledge of what we need right off the bat.
You would think, however, that once they’re enlightened, they’d act on what they have learned. Many of them do; later in the day, another Twitter user I approached apologized and was more than happy to make changes to her inaccessible tweets. Her warmth, sincerity, and complete lack of defensiveness were exactly what I needed after such a disappointing encounter.
I can put this down as one unfortunate incident and move on, and I intend to do just that. Before putting it behind me, though, I feel bound to tell people about my experience, and explain why that never should have been allowed to happen. Even among supposedly inclusive circles, I was treated like an annoyance who should just go away and stop complaining already. These people have “real” work to do. Can’t I leave them to do it?
This is not okay. You cannot and should not be allowed to get away with cherry-picking which minorities to support. You should not get to decide who is worthy and who is not. We’re not perfect, and sometimes we are guilty of cutting people down for honest mistakes. Despite this, I will continue to hold inclusive communities accountable for their refusal to acknowledge and stand with us. (Predictably enough, the activist I tweeted did not back me up or tell her followers to stop.)
In the meantime, I’m going to appreciate and uplift those who are willing to listen and act. The world isn’t all bad, and I can’t let myself drown in a sea of rage-fuel that really isn’t personal. I know I’m not useless. I know that my access requests are legitimate. I know I’m worthy of respect. I’ll just have to wait patiently for everyone to clue in, I suppose.
Now, excuse me while I get back to my productive, useful life.

The Unconscious Cultivation Of Defensiveness

Disabled people have often been (unjustly) accused of being perpetually offended. We seem to be screaming about some atrocity or other with regularity: words like “discrimination,” “bigotry,” and “injustice” flow freely from our lips. Most of the time, able people’s unwillingness to understand our anger drives me mad. If they spent even a single day in our shoes, they might change their tune. No matter how often we explain why our passion is warranted, there will always be some able people who refuse to listen. But … (I do love buts, don’t I?)

I’m becoming more aware of our unconscious, unintentional cultivation of defensiveness. We mistake simple kindness for condescension, barriers for willful discrimination, and ignorance for deliberate refusal to change. Often, our suspicions are proven accurate—indeed, we are so often proven right that it’s understandable that we’d jump to conclusions. I can’t help but worry, however, that we are jumping the gun.

This issue was brought to my attention when I read a blind person’s rant about a flight attendant who did not want to charge him for a drink. His assumption was that the free drink was offered out of pity, as though the only reason to be kind to us is to express a desire to improve our tragic lives. To my surprise, this assumption did not remain unchallenged. The vast majority of those who responded cautioned him against narrow-mindedness, even advising him to simply accept the gesture and move on. While I can identify with his instinctive defensiveness, and acknowledge that I’m guilty of the same, I think we should all examine our biases very carefully. The free Slurpee I was provided with at a convenience store may have been given out of a genuine wish to make a girl’s day, but the reaction, even from family, demonstrated that disabled people and those close to them always suspect random acts of kindness to be a direct result of blindness. When I announced that I’d been given a free drink, I got the following response.
“Maybe it’s because he was feeling generous tonight.”
“Nah,” said someone else, “it’s because you’re blind, I’m sure.”
Able people’s tendency to attach unnecessary meaning to disability can be shocking. I was insulted when a student, after discovering that a professor often praised my work, remarked that his favour was based solely on blindness. (It may have had something to do with her own poor performance in the class, but I’ll never know for sure).

The thing is, similar acts of kindness are directed at perfectly able people, and they do no more than I have to earn them. If you stand in a crowded pub long enough, some stranger will buy you a drink as often as not. If the Slurpee machines are about to be cleaned and refilled anyway, you’ll probably get a free one. If someone sees you from across a restaurant and is feeling magnanimous, they might send a free dessert over to your table. These actions are not, and should not be, linked with pity or condescension. Sometimes, humans just feel like being nice.

If you receive a free drink, try to take it with grace if you can. If someone pays for your coffee, interpret it as an attempt to make your Monday morning better until you see evidence to the contrary. If you are not chosen for a job, don’t immediately blame blindness—it’s possible you simply were not the most qualified candidate.

Don’t get me wrong: I realize that, in the majority of cases, blaming blindness is justified. I and other disabled people have been through too much, and faced too much blatant mistreatment, to be crucified for viewing disability as the culprit in most cases. That said, it’s worth stepping back and asking ourselves whether we’ve become too accustomed to defensiveness. We may not mean harm, but perhaps we’d be better served by approaching life with a bit more thought and a little less passion.