“A” is for Advocacy

I’m not a parent, but the internet has exposed me to the struggles, joys, and everyday dilemmas of parenting in this ever-connected, ever-judgmental world. I read discussions about how to teach kids to interact more gracefully on the playground; how to remove bread from a hot toaster; how to play traditionally-inaccessible board games; how to shave sensitive areas of the developing body. Each time I see one of these, my heart soars. My parents had to raise me with sporadic, impersonal support, while parents who knew nothing of disability looked on with varying degrees of disapproval. They made it work, but there are many gaps in my basic skillset that might have been filled by an online community of disabled people who were willing to share their wisdom. If Disability Wisdom or VI Talk had been around when I was growing up, I might not be so wary of toasters.

The one skill that seems underrated, particularly in rural settings, is advocacy. Several of my teachers, visual consultants, and special education coordinators were adamant that I master an array of miscellaneous skills, like cutting paper with scissors, drawing the human form (with what little vision I had), and writing a legible signature. My childhood involved hours spent cutting a piece of blank paper into a series of meaningless rectangles that were destined for the recycle bin. I practiced my signature each day in a special book, trying vainly to copy the raised signature on the front cover, and wondering why sighted people were allowed to have illegible scrawls while I had to achieve perfection. (These days, my signature is defiantly unreadable.) I connected dots on graph paper. I completed strange worksheets with tactile circles, using a different colour for each one. These exercises ensured that I’d always be comfortable with scissors, and have a rudimentary idea of how to draw a human face, but they didn’t teach me how to stand up for myself, or ask for accommodations, or interpret my rights as a disabled person. Every now and then, someone would mention that I must always be my own advocate, but the concept was never expanded upon, and far more attention was paid to how I held a pencil—a pencil I’d seldom use, since I couldn’t handwrite—than how well I understood what being a disabled adult might be like.

Steeped as I was in traditional Catholic culture, I was an obedient student rather than a respectful one. Fear and anxiety were far more influential than respect or interest, and while I enjoyed school and hungered for knowledge, my primary and secondary education rarely encouraged me to grow into anything more than an unquestioning rule-follower. I’d occasionally be chastised for seeming too passive, or criticized for failing to take initiative, but years of conditioning kept me from voicing disagreement or making my own decisions in almost all cases. After all, what did I know that grownups did not? Who was I to request accommodations that made sense to me when someone who earned a lot of money and used plenty of high-level language felt differently? How could I ever provide insight about my own learning style when someone with decades of experience knew best? I carried on in this way for far too long, wanting to take the wheel but convinced I’d cause a wreck. Systematic rejection of my ideas and insights bolstered the illusion. By the time I left grade school to start my postsecondary adventure, I had very little idea that my rights would constantly be challenged, or that I had disability-specific rights at all.

In university, I soon figured out that even though I had no foundation to build on, I’d have to learn how to be my own advocate, and learn it quickly. My life and education were in my own hands, and those hands were more capable than many had let me believe. With ample coaching and encouragement from newly-discovered disabled friends, I engaged in the controversial art of speaking up. I practised saying “no,” or “yes, but not that way,” or “please Don’t grab me,” or “I want to try this instead.” When roadblocks were put in my path, I didn’t docilely accept them as immovable parts of my reality. Sometimes, I was even a little bit firm. I worked to let go of “I’m sorry, that’s probably silly” and “What do I know?” In place of those familiar crutches, I paid attention to what worked for me, and asked for it. When charm failed, which wasn’t often, I used blunt logic, and usually won. It was a novel and exhilarating way to live, though it came at a cost. Since acquiring advocacy skills, my life has never been as calm and peaceful as it once was. Taking control of your own life is exhausting business.

Living in a more tolerant and accessible world doesn’t mean everyone can sit back, relax, and forget how to take ownership of their lives. If anything, widespread complacency about our supposedly-civilized society means parents need to be even more diligent about instilling advocacy skills in all children, not just disabled ones, early and often. I’m not suggesting that children should be taught to despise authority or behave disruptively for the sake of it, but they should be as prepared as possible for the ignorance, bigotry, and exclusion they will inevitably face. Adults are not always right, and it’s neither healthy nor safe to teach kids otherwise.

Whether you’re a parent of a disabled child or a newly-disabled adult, don’t ignore the limitations of a life without solid advocacy—a life far more limiting than a disability could ever be. Be mindful that third-party advocacy will never match the advocacy you can do for yourself. Value the insight and experiences of experts, but be open to customized solutions. Seek advice from the disability community, but remember that conventional wisdom is not without merit. Recognize that not every problem is a disability problem; some of them are just ordinary problems that can be solved in ordinary ways. Emphasize the powers of courtesy and respect, but never underestimate well-harnessed anger. Acknowledge social hierarchy, but be aware that hierarchy is commonly abused.

Parents may resist teaching advocacy skills, and I have the greatest sympathy with them. Advocacy is frightening, and frequently disappointing. It is delicate, thankless, much-maligned work, especially when it’s done by young people. It will not always produce the hoped-for results, and it’s rarely much fun. Understand that advocacy is tough to cultivate, and likely to inspire nasty pushback from people your child loves and trusts. Be ready to deal with the possibility that your child’s advocacy will sometimes be directed at you, and that you won’t like how it feels. Know that you will need to respect their advocacy, even if it hurts or upsets you. Accept that you are not exempt. Shudder at these harsh truths, and teach it anyway.

Advocacy skills have guaranteed that my education was useful and comprehensive. They prevented me from being barred from services I required. They help me be productive and successful. Advocacy is the cornerstone of every fruitful thing I have ever done for my schooling, my career, and my relationships. It keeps me on my feet when the wind is doing its best to knock me over, even and especially when that wind is coming from an unexpected direction.

Before you worry too much about signatures and scissors and the exact method of removing bread from a toaster, remember that A is for advocacy. Start there, and everything else should follow.

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The Blind Girl Who Sings

In her memoir, Hourglass, Dani Shapiro writes about a “third thing” that all married couples should have in order to live happily together long-term. The first thing is you, the second thing is your spouse, and the third thing is the external glue that unites you. It could be a common taste in music, or the process of raising your children, or a mutual love of the outdoors. Whatever it might be, you need a third thing to give your relationship shape. And, as I read about this concept, I realized that music is the “third thing” in my relationship with myself. There’s me (first thing), disability (second thing), and music (that essential third thing).

I’m a complete nobody, but while I was growing up, I had a modest musical reputation. Rural surroundings made it easier to stand out, and my family’s love of music was all the encouragement I needed. One of my earliest memories is picking out “Mary had a Little Lamb” on my grandmother’s piano, refusing offers of help with growing stubbornness. At five, I was singing publicly. By the time I left home for university at seventeen, I had sung competitively for eleven years, and was a common figure at local fundraisers, funerals, weddings, and other community events. I’d never be Idol material, perhaps, but I was dependable and versatile, occasionally bringing crowds to their feet. Sometimes, I’d even win competitions. It was enough.

Once I began studying communications and preparing for a career centred more on writing than music, I let much of my talent go dormant. I still sang to myself constantly—to the dismay of my roommates, I’m sure—and found the time to sing with friends and perform at the occasional family funeral or wedding. I had shifted gears dramatically, releasing my careful posture and letting my exceptional lung capacity deteriorate. Music seemed to have no fixed place in my new reality, and city living meant that if I’d wanted to claw my way back up to where I’d been, I’d have to fight for it. Stressed as I was by academic pressure, chronic pain, and mental health struggles, I didn’t have that fight in me. I focused on writing, sang exclusively for fun, and made noises about joining a choir someday. Two years have passed since my graduation, and serious musical pursuits are still at the bottom of my to-do list.

Though I’m occupied with other things, I miss being a singer every day. I miss it for the obvious reasons: the rush of performing for an enthusiastic crowd; the joy of learning new and challenging pieces; the grind of endless rehearsals that somehow turn into effortless beauty when you’re looking the other way. I miss dressing up and connecting with strangers and congratulating fellow musicians. It could be gruelling, but I miss it dearly.

There’s another dimension to my longing: music was my conduit to a life less defined by disability. People often thought of me as “that blind girl who sings,” it’s true, and many of them waffled on about my vocal gift being divine compensation for my undesirable eyes. Even so, while I was singing, I wasn’t thinking about cane technique or traffic patterns. When people flocked to me after a performance to tell me my voice had meant something to them, no one was dwelling excessively on my broken eyes. If someone reached out to touch me as I passed, it was out of a desire to express something more positive than “You’re going the wrong way! I must save you!” Adjudicators were mostly impartial, occasionally referencing my lack of eye contact with audiences but otherwise more interested in what I sounded like than what I looked like on stage. With a few exceptions, I was judged for my talent, hard work, and emotional expression. Nobody who watched me earn a standing ovation with “Don’t Cry for Me, Argentina” was likely to label me incompetent, graceless, or pitiable. Music, especially in the minor leagues, was as close to meritocracy as I was ever going to experience, and I had no idea how valuable it was until I had to live without it.

The musically-talented blind person is a narrative with which society is comfortable and familiar. Few people questioned my right to inhabit that world. My “We’re not in Kansas anymore!” moment came in a rhetoric class, a couple of years in to my communications degree. I was unpacking my laptop, lost in thought, when a student I’d never spoken to before approached me.

“Why are you here?”

The question came with no bark on it. It wasn’t hostile, but there was a straightforwardness to it that made it shocking. Immediately, other students began to gather around, wondering how this would unfold.

“I’m in this course, so…”

“Right,” he continued, “but why are you here? In university?”

“I’m taking the Bachelor of Communication Studies program, and this class is one of the option courses.”

“I know, but blind people can’t be writers.”

It dawned on me that I didn’t have to participate in this bizarre conversation. I was being baited, or insulted, or something. Being a dedicated glutton for punishment, I responded.

“Of course we can be writers.”

“But how?”

By now, he was starting to sound genuinely curious. Receptive, even?

“Well, I use a computer, like everyone else…”

A few other students pressed closer, making disapproving noises. The student continued, sounding defensive.

“Well, I’m not up on all the technology…”

Clearly not.

Class began at that moment, interrupting one of the most unsettling conversations I’d ever had. As the instructor introduced the course outline, I realized, all at once, that I was back at square one, back to proving myself, back to basics in the worst way. Blind communications professionals made less sense to people than blind musicians, it seemed, and I had never felt more disabled. The student and I eventually became friendly, and I’ve since learned that the blunt approach I found so off-putting is simply part of his communication style, but he reminded me, whether intentionally or not, that I must always be ready, at a moment’s notice, to explain my place in the world.

The oft-repeated observation about minorities needing to work harder, shine brighter, climb higher than everyone else just to be regarded half as talented still holds true. Being disabled is a little less demoralizing when you have some talent or skill that helps you stand out for something other than your disability. If your reputation as a singer or designer or writer or chef becomes more powerful than your reputation as the weird girl with the stick, or the weird guy with the wheelchair, you’re winning. The trick is to train people to see your brilliance before they see your supposed deficiencies. Distract them with your finer points, and maybe they’ll forget about all the ways you don’t fit in.

There’s plenty of bitterness buried in this truth, but I’ve found a way to put a more encouraging spin on it. Instead of looking upon music as the only part of my life that made much sense, I choose to view it as a valuable skillset that set me up for greater success in other facets of my life. All those public performances have cured me of paralyzing stage fright. Public speaking doesn’t scare me, and thriving under pressure comes more naturally than working in slow-paced, gentle environments. Musicianship expanded my social circle, increased my confidence, and helped me shape my identity outside of the box marked “blind.” I may have been the “blind girl who sang” to most of my community, but that’s still better than simply being “the blind girl.” Now, I can be “the blind girl who writes,” or “the blind girl who edits,” or, you know, “another disabled human trying to live her life.” I’m happy enough in all of those boxes.

I hope every disabled child has the opportunity to find their third thing. Maybe, like me, they’ll discover fourth and fifth and sixth things, just to keep life interesting. These days, writing and editing have become almost as essential to my identity as music.

Discover that third thing. Give your relationship with yourself shape and definition. Allow others to see past the cane, or dog, or walker, or their own perceptions. Do it for yourself, primarily, and watch as other people begin to notice you in ways far more pleasant than “Hey! There’s that disabled person I always see at the bus stop!” Perhaps you’ll master that third thing to the point of renown, or perhaps you’ll choose to embrace it quietly. You do you.

Wherever your journey takes you, find your third thing, and be seen.

The Settling Kind

In may, I visited my very first escape room. I expected some hiccups, but was nonetheless excited. Escape rooms sounded like the ideal amalgamation of everything I find fun: low-key activities, free of unnecessary stimuli, packed with puzzles and bolstered by a team atmosphere. I’m not naive, and I anticipated visual challenges I’d be unable to meet, but I assumed there would be enough tasks I could manage to make the experience worthwhile. Besides, I was used to settling for a little less. It’s an art form at this point.

The escape room proved less accessible than I could have imagined. We didn’t make it through the entire sequence, so I can’t guarantee there weren’t accessible brain-teasers lurking near the end, but everything we encountered was, at minimum, partially visual. Even the logic puzzles required such complexity of description—and such perfect recall on my part—that I gave up completely. While the fully-sighted participants swarmed the claustrophobic space, ransacking shelves and deciphering tiny writing on the walls, I hung back, at loose ends. Occasionally, some sympathetic soul would try to include me, but the activity was on a tight timeline, and none of us could think of a timely and effective way to let me participate at all, let alone as fully as everyone else. Ultimately, I was of no more use to anyone than the toddlers running around our legs.

I left the room disappointed, berating myself for being so. Shouldn’t I have expected this? Shouldn’t I be used to this by now? Why did I let myself hope, anyway? I ought to know better.

When you grow up rural and disabled, disconnected from opportunities and understanding peers, you’re likely to adopt the art of settling as a survival mechanism, and quickly. If you’re unable to be at peace with missing out, you’re probably in for a war of attrition.

It wasn’t all bad: My family and friends were unfailingly accommodating, and my sister was denied many an activity because my parents worried it would exclude me. Cousins and friends modified games to make them easier for me to play, and valued my participation almost without exception or complaint.

The rest of the world wasn’t so inclusive, and I came to accept, at a very young age, that I’d better get used to the sidelines. After a few years of skipping rope on the stage while my gym class played dodgeball, or solving math equations while my classmates took swimming lessons, I even grew to prefer the fringes. It seemed safer there—more suited to my introverted, self-conscious personality. Inclusion seemed like an unreasonable burden to place on anyone, and when you grow up surrounded by nondisabled people, you tend to prioritize harmony over desire.

By the time I started university and amassed a group of disabled friends, I noticed how demanding—that’s how I viewed them then—they all seemed to be. They wanted described video and tactile museum exhibits and blind-friendly versions of mainstream sports. Their determination to participate felt foreign and frightening. I’d spent years convincing myself I was happy to spectate. A deeply-embedded combination of habit and self-protection had let me hover on the sidelines without acknowledging my own desire for a life more fully lived. All this time, I had thought myself the kind of person who hangs back, sits things out, and says no to anything that seems too fun or messy or adventuresome. With the exception of my musical performances, I’d rarely permitted myself to reach beyond my limits and ask for more. On the cusp of adulthood, I was forced to accept that I had contorted myself into the settling kind to avoid rejection and exclusion. It’s easier to say “I don’t want to be included,” than to say “I wanted, and did not get.”

Growing pains set in, and some of them persist today. I still catch myself being a “no” girl. Settling for less than everyone else comes far too naturally, even now, and I continue to demand higher things for others while quieting my own dangerous longings. Loved and encouraged as I am by my family and friends, I still instinctively reassure myself that I don’t need inclusion. I don’t need to be welcomed. I don’t need to transcend my most basic needs. If I can pay my bills and hold certain types of jobs, what right have I to anything more frivolous?

Growing pains are not eternal, and look how much growing I’ve done! I’m now more focused on inclusion than access. I’m more inclined to ask for a pleasant experience, rather than contenting myself with a bearable one. If my reaction to the escape room is any indication, I’m becoming downright spoiled, expecting to enjoy social gatherings and play an active role in activities I’ve paid for. I’ve practically become a princess!

I’ve come a long way, but I won’t diminish what it took to get me here. Dismantling my tendency to settle has been a painful and unpredictable process, with many discouraging moments when I’ve judged myself or others for wanting what nondisabled people are given by default. Occupying my place at the table has been, and remains, an ongoing work-in-progress.

Are you a settler? Have you learned to think of inclusion in terms of what you deserve, while believing it’s a right for everyone else? Is fun something you force yourself to earn? Do you pretend you like the margins because the centre might reject you?

Don’t settle to survive. Do not place yourself in a supporting role because main characters have bodies and brains that pass as “normal.” Break the pattern of treating less like it’s more. Be grateful, and be patient, but be a little demanding, too. Realize that a more vibrant life is possible, and allow yourself to want it, because no one else can make it happen for you.

Most nondisabled people don’t tie themselves in knots, wondering whether they deserve to enjoy their lives. So, my fellow disabled people, why should we?

Singing up the Mountain

There’s a piece of wisdom I’ve often heard, though I’ve never traced its origin:

In life, we’re all just hiking up the mountain. You can complain about how your feet are sore, or you can sing all the way up. Your choice.

I’m no champion of relentless positivity. I maintain that, for people whose brains are wired like mine, mantras and affirmations bring on more depression than inspiration. I don’t wear rose-coloured glasses well, and even my most indulgent friends remind me to watch my pessimistic streak.

Yet, the idea of life as a long, mandatory hike appeals to me. Some will have an easier time than others. Some will find the path to be wide and accommodating, designed for their every need and wish. Others, especially those who represent at least one minority, will find the hike more arduous. Perhaps the path is narrow and winding. Perhaps your equipment is in rough shape, and you don’t have the means to upgrade. Perhaps your way is obstructed by treacherous pebbles that will send you tumbling if you’re not careful. Perhaps it’s littered with concerned strangers telling you to turn back, choose a less ambitious path, or adjust your pace to a speed they consider more appropriate.

Whatever your mountain looks like, whichever obstacles you might encounter, only you can decide how best to climb it. You can take advantage of the wide, welcoming paths, never sparing a thought for those on more dangerous journeys. You might decide to stray from your comfortable stroll to shift a boulder or clear a trail for someone else. If, like me, your hike is rocky and unpredictable, you may want to contribute to a large-scale effort to make the hike safer and more equitable for everyone who is stuck on this mountain with you. (This mountain is yours. There is no right way–only your way.)

There is another choice to make, and as I experience one of the most trying periods of my life, I’m thinking more often than usual about this mountain of mine. There have been times—and I’m sure there will be more—when climbing felt natural and simple. Boulders were moved from my path by forces much stronger than me. Fellow hikers let me lean on their broad shoulders. The map was clear. I knew where I was going and how I’d get there.

At this moment, my landscape is much more uncertain, and I am tired. My feet are sore. My canteen is nearly empty, and my fellow hikers carry burdens even heavier than my own. I can’t hear myself think for the struggles around me, and my desire to broaden the path for others is tinged with despair at my own sad smallness.

But as I write this, as I contemplate a path that has never seemed less welcoming, I know that it’s time I started singing again.

My song might falter while I cling to jagged places. Tears and frustration might dampen its beauty. Sometimes, I’ll be making up the lyrics, or humming nonsensically, because damn it if I haven’t forgotten all the words.

But I don’t know of any other way to keep climbing.

So I’m gonna sing my way up this mountain. It won’t be pretty, but it will sustain me. It will have to do, because turning back? Giving up? Slowing my step to suit someone else’s comfort? These aren’t options—not for me.

Yes, we can still complain that our feet are sore, that we are tired, that we can’t read our maps. These admissions are valid and necessary. We will need to pause, rest, drink some water, lean on the nearest shoulder.

But whenever we can, wherever we can, let’s not forget to sing.

The Empathy Gap: When “Been There, Done That” is not Enough

As someone who has been told several times she is too empathetic to survive in this harsh world, I assumed I knew a lot about empathy. I never pretended to know how to kindle it in others, but I rarely had difficulty placing myself in even the most unusual positions to investigate all sides of an issue. While this tendency to favour the empathetic response is often involuntary and sometimes overwhelming, I always viewed it as a net positive. Surely, by being such an effortlessly empathetic soul—if not an effortlessly kind one—I must be adept at feeling and demonstrating compassion for others, especially when I’ve walked in similar shoes. Since I’m privileged to be trusted with so many personal stories of struggle, my well-ingrained empathetic response was one of the few traits about which I was fully confident.
Like so many of my long-held and cherished assumptions, I ran into compelling evidence that I was wrong. What is more, I should not have needed a formal study on the empathy gap to convince me; my own negative experiences with the disability community should have been sufficient. According to the authors of this study, the common belief that walking in someone else’s shoes ought to inspire compassion and even leniency is statistically inaccurate. This might not feel true at first, but the more I pondered it, the more sense it made.
Take this example from a few years ago, when I was beginning to find my place in the disability community: An acquaintance, who lived with physical and mental disabilities, was finally able to obtain permanent, fulfilling employment. I expected he would dedicate some of his emotional resources to encouraging others who had not yet reached that goal, or at least affirm that the struggle is, in fact, real. Within months of his triumph, however, he was already cutting fellow disabled people down, suggesting that aspiring workers should simply try harder, and campaigning to cut benefits meant to help those aspiring workers survive while they continued their job searches. The years he had spent searching for his own job, the discrimination he had battled, the pain he had suffered—he had either forgotten them altogether, minimized their power, or attributed his success to superior mettle. Whatever the reason, I drew away from him in shock and disappointment, unable to believe someone could be so hypocritical and heartless.
The idealist in me is loath to admit it, but his response wasn’t just statistically normal. His response, extreme though it was, is one I see in most people I know, including my oh-so-empathetic self. I’m working to exercise compassion and empathy more consciously and intentionally, but I still catch myself dismissing or minimizing someone else’s experiences on the bogus basis that I’ve been there, I’ve done that, and I’m on the other side of it or, at least, I’ve learned to shoulder it. Meanwhile, the nondisabled people I know are more likely to listen attentively and judge less readily, because they have not worn those shoes and do not feel qualified to do more than be supportive. You will find far too many people, disabled and nondisabled, who are quick to judge a situation even and especially when they have no knowledge of it, but most people know when they’re out of their depth, and won’t pretend otherwise.
Now that I’ve been a multiply-disabled person for decades, and worked in a disability-adjacent field for a few years, I am forced to confront the reality that lived experiences don’t automatically result in increased compassion and empathy. In fact, disabled people and those close to them tend to err on the side of harshness, reasoning that they or someone they know managed to “overcome,” which means they have little or no sympathy for anyone who is less successful. There’s a well-worn joke in the disability employment field about how case managers with disabilities are the toughest, and for the most part it checks out. Disabled case managers, and those with disabled family members or friends, may have more knowledge and may make fewer generalizations on average, but they are also likely to say something like “I was able to do this, so why can’t you?” When I wrote about my fear of blind people, this is the core of what I was describing: nondisabled people typically take me at face value after a while, but disabled people often seem to be sizing me up. In an ugly and ironic twist, I have caught myself sizing up my clients in precisely the same way.
As is my custom, I thought about calls to action before sitting down to write this post. I dislike bringing up an issue without pointing toward potential solutions, and this is no exception. Unfortunately, there doesn’t seem to be much direct action to be taken against the empathy gap, besides acknowledging it exists and fighting the instinct to judge, give unsolicited advice, or condemn when we encounter someone who is wearing shoes very like our own.
When you feel empathy, ask yourself the hard questions: Is this a pure feeling? Am I using my past experiences to offer guidance and validation? Is the advice I’m giving, the story I’m telling, the wisdom I’m dispensing welcome? Solicited? Needed? Useful? Am I sharing understanding, or centreing myself? Do I have any right to speak to this situation at all, or am I talking when I ought to be listening?
I’ll close with insightful advice from the authors of the study I referenced earlier. According to Ruttan, McDonnel, and Nordgren, it’s best to get out of your own head, place less emphasis on your individual experiences, and focus on the situation in front of you. If it helps, think of all the many people in the world struggling with the same burdens, instead of zeroing in on your personal journey.
Armed with this knowledge and these strategies, I hope we can all put our empathy to good use, and grow into a more supportive, less judgmental community. Come join me!

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.

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.