Better Living Through Severed Shoestrings

“Money doesn’t grow on trees, you know,” played on repeat throughout my time in public school. I was better off than many blind students, since my school division rarely hesitated to fund what I needed, and my educational assistant’s skill far exceeded her salary. Despite this relative abundance, I was never permitted to forget how lucky I was to receive basic educational tools. Fellow classmates were forever losing or damaging their books and equipment, while I was reprimanded for so much as bending a binder. I was threatened with a $700 fine for misplacing one volume of a Braille book. If a piece of expensive equipment malfunctioned—usually because I had not received the most rudimentary lessons on how to use it—I was held solely responsible, my attempts to explain myself summarily dismissed. Almost nothing I used belonged to me, so a broken coil or missing stack of Braille paper was grounds for outright hysteria. In fact, my first panic attack was triggered by a problem with my school-issued laptop. It had been drilled into me by a few overzealous adults that I could either be a faultless steward of my assistive technology, or I could surrender the right to have any at all. Panic seemed warranted.

University was a welcome reprieve. Generous grants and scholarships covered all my equipment. There was an expectation that I’d take care of my technology to a reasonable extent, but no one was hanging over my shoulder, evaluating the way I carried my Braille display. Grant money wasn’t unlimited, so I still had to be cautious, and when something broke down, there was no guarantee I could afford to repair it. For those fortunate enough to be uninitiated, specialized technology seems to break down a lot.

Then, as if to cement this shoestring pattern, I started working in the nonprofit sector. Anyone who has worked in nonprofit organizations for any length of time knows that you can’t assume you’ll have reliable access to stamps and functional phone systems, let alone costly assistive devices and software. Funding is available for Albertan employers, but I had already developed the habit of accomplishing all tasks with bare-bones resources. Years of living on the disability shoestring meant I was a convenient employee, but not necessarily an optimal one. In the disability world, you often get what you pay for, and the nonprofit tendency to use no or low-cost alternatives to standard products spurred me to avoid asking for anything at all unless my job depended on it. My employer checked in periodically to make sure I didn’t need anything new, but I insisted I was just fine, thanks. Again and again, I chose the long, winding path to every goal—whether at work or in my personal life–because it meant conserving other people’s money and time. What could be more important than that?

Recently, I switched to a position in which employees are expected to make any reasonable request that will increase their productivity. Nothing is promised, but much is delivered, and my shoestring habits are neither lauded nor useful. Profligacy isn’t encouraged, but neither am I praised for taking hours to perform simple tasks just because I used a cheaper option, or refused to ask for help, or failed to request an accommodation. In my new environment, resources are plentiful, and I’ve had to do major soul-searching to become comfortable with that.

It has taken me years to pinpoint why I find the hard way so easy. The trouble with the shoestring lifestyle is that while it’s not enjoyable, it’s comforting. If no one can accuse you of being a drag on the system because of those dreaded “special needs” of yours, you can indulge in self-righteous piety. Doing everything the difficult but economical way is a bulwark against societal pressure to take as little from a harsh world as you can. I convinced myself I had to earn my right to work, which meant ensuring that no employer or disabled peer could view me as financially burdensome. Amid all my anxiety about costing too much or needing too much help, I forgot that employers are typically more attached to excellence and efficiency than economy. If I proved to be valuable and competent, employers would find ways to accommodate me. On the other hand, if I cost them next to nothing but lagged in terms of productivity, they’d be well within their rights to trade me in.

A lawyer friend said it best: “A good dose of get-sh*t-done is important, but time is money.” Cultivating an independent, innovative spirit is worthwhile, but it’s equally important to identify what you need, and have the guts to ask for it. Shoestrings make great security blankets, but when resources are within reach, it’s best to snip those strings. The severing exposes you to potential criticism, yes, and it means someone might conceivably make the case that you’re too costly to keep, sure …

But it also means you’ll do your best work, in good time, with minimal risk of burnout. What could be better for your work-life balance, your health, and your employer’s bottom line?

I’ll keep my ability to improvise and adapt. I’ll hang onto my talent for working under tight budgets and tighter deadlines. I’ll learn multiple ways of circumventing disability barriers, because the ideal environment will not always be there.

As for the scarcity-based, shoestring mentality? I think it’s time I let that go.

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“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.

“Are You Afraid of the Dark?”: a Sighted Person’s Adventures With the Screen Reader Experience

When my friend Laura told me she was considering a screen-free vacation, I assumed she was speaking of a general unplugging from all her favourite technology. She clarified the point: she would spend her holiday using nothing but screen readers.
For the average screen reader user, this doesn’t sound like much of an undertaking, but while Laura works with screen readers constantly in her role as accessibility tester, she is fully sighted and had never depended exclusively on a screen reader before. Since Laura is always finding new ways to become even better at what she does, she felt this challenge would enhance her skills at work and give her a better, if not complete, understanding of what the computing experience is like for the everyday visually impaired person.
To my immense delight, Laura agreed to write an account of her adventures, her discoveries, and her advice for other sighted people who want to try the same experiment.


“To alcohol,” once proclaimed Homer Simpson, “the cause of – and solution to – all life’s problems.” Apply this logic to screen readers and this quote sums up my recent winter break.
Screen readers and other assistive tools make technology usable for people with differing abilities relating to vision, hearing, motor skills, etc. Assistive tech achieves this by converting one type of information into other types depending on the user’s preference. For example, screen reader software converts what would be visual words on a computer monitor or phone screen into electronically generated speech and sounds. Likewise, captioning turns speech and sounds into visual words. The field of accessibility covers both the production of technologies like these, and information conversion. To further my skills in this field, I decided to try using these tools on a more personal level. I decided that I was holding myself back in my accessibility career by relying on looking at the screen while using a screen reader. It was the easy way out, and as JFK once said, “we choose to go to the moon… and do the other things… not because they are easy, but because they are hard.”

The “Screen-Free Holiday” Experiment

In my life, I’ve undertaken some wacky challenges that have brought me some new and interesting insights. My week of wearing DIY upcycled thrift store clothes taught me that while a duct taped hem is good in a pinch, it can get pretty uncomfortable when it starts to stick to your legs; that yes, free chocolate is so powerful a force that it is possible to give a single talk about making both bacon chocolate truffles and vegan chocolate truffles without starting a riot. Most recently, I decided to rely as much as possible on assistive technology for two weeks, even though I am sighted, just to see what would happen. Here were my plans for a screen-free holiday break from work with the following rules:

  • While in my hometown of Pittsburgh, I would avoid looking at screens and would instead rely on screen readers and other assistive technology as needed.
  • Paper wouldn’t count as a screen, so reading newspapers and books was okay. There was no way I was going to pass up my grandmother’s Reader’s Digest magazines.
  • If I cheated and looked at the screen, I’d need a good reason to explain why I did it.

I knew there would need to be exceptions built in to my process. For example, I was planning on going to the movies with a friend, and while I would request the industry-standard free headset that describes what’s happening in the movie to me, I would not watch the movie with my eyes closed. I also knew I’d be unable to avoid screens around the house, like clocks or oven screens. And, since my dad takes great pride in being able to show people cool things on his smartphone, I wouldn’t object if he called me over to watch something. Overall, I wanted to establish guidelines, not black and white rules.

What This Article is Not About

Here are a few necessary disclaimers before we get to the fun stuff:

  • The opinions expressed in this article are my own and not those of my employer. This was an independent experiment.
  • This challenge should not be construed as a blindness simulation. The article covers my own personal experience, not those of others, blind or sighted.
  • My challenge was not specific to any platform. In fact, I will intentionally use ambiguous language to avoid revealing which tech I used. All that’s important is that I used a phone and a laptop.
  • Finally, I won’t be complaining. I have the luxury of choosing when and if I can depend on assistive technology while others do not.

Screen-Free Stage 1: Biting off More Than I can Chew

Much like grief, learning to use a screen reader brought me through multiple emotional stages.
First, there was the initial “biting off more than I could chew” phase. I had some previous experience with keystrokes and smartphone gestures, but I hadn’t actually done much beyond the basics. I quickly realized that I had a lot to learn, and did my best to avoid slipping into hopelessness.
I found myself soldiering on through brute force, trying everything I could think of to get what I wanted done. Often, I was so focused on figuring out how to perform a task that I’d forget what I was attempting to accomplish in the first place. That note I had wanted to take was lost from my memory by the time I’d thought to try the speech-to-text engine, for example.
Full disclosure: I resorted to cheating when entering longer blocks of complex text, such as wireless network passwords. Cheating also became necessary when trying for literally hours to perform what I thought were basic tasks, like copy/pasting a URL or entering a new phone contact.

Screen-Free Stage 2: Embarrassing Run-Ins (and a Dash of Swearing)

Next, I entered the swearing stage, in which I had several embarrassing run-ins. I couldn’t figure out how to prevent the mobile screen reader from announcing everything out loud, even when the screen was locked. It’s a good thing I don’t lead a secret other life!
I felt such a sinking feeling when a friend sent me an image with text inside it. These are ubiquitous online, but screen readers can’t interpret them without additional software. I ended up using OCR (optical character recognition) to read the picture, but struggled to tell her about what she had done wrong in a tactful way.
Using speech-to-text was another significant adjustment for me. I kept treating dictation like recording a voicemail, failing to speak punctuation and often ending all texts with “ok, bye.” The quality of my messages improved after Meagan, an experienced screen reader user, kindly pointed out that I could (and should!) speak my punctuation aloud to make my messages more readable, but the process remained challenging.
There was a humiliating incident where I couldn’t figure out how to answer the phone when an extremely time sensitive phone call was coming through.
Eventually, my abnormal behaviour became apparent to my family and friends. I was struggling and needed a way forward.

Screen-Free Stage 3: Back to Basics

Tired of the chaos, I decided to go back to basics and RTFM (read the “freaking” manual). I went through each tutorial slowly and carefully, searching for more information online along the way. Things seemed to get easier, but really the only thing that changed was that I got better at using screen readers, slowly but surely. Learning to use a screen reader is just like any other skill, such as learning to play an instrument. In both cases, you press buttons to try to get the sound you desire. Beginners can hit some jarringly wrong notes, while experienced players sound like geniuses to those around them.
My high school band director liked to say that practice doesn’t make perfect; practice makes permanent. I had been practicing using a screen reader while still relying on my vision, so I was developing some bad habits that could have become permanent if not for this practice, like using the mouse to navigate instead of learning new keystrokes. I may not have tested every facet of the screen reader experience—I was not brave enough to try online shopping, since my confidence was not high enough to risk spending money—but I did make real progress. By the end of my break, I had tried a few “stunts,” like sending an important, although short, email to a colleague and I even took and posted a picture to social media, all without looking at a screen! My crowning achievement was writing this blog post without using my sight. (Fortunately, Meagan used her excellent editing skills to make this legible. I came back in and added some more comments afterward without using a screen reader. Since I was back in my “normal” life I realized that if I wanted to just finish this piece I couldn’t also take the time needed to become a screen reader user who can also do word processing well. Progress, not perfection.)
Finally, I reached a place of acceptance. Acceptance is not agreeance, and it doesn’t mean I liked everything about my experience, but I was at least about to sit down and face reality.

New Lessons, New Growth

I learned a few unexpected lessons along this journey…
First up: earphones are so important! As I mentioned earlier, screen readers can seriously compromise privacy, especially for novice users. Earphones fulfill the dual purpose of protecting your privacy while letting people know you are occupied with your phone or computer. (Since your eyes won’t necessarily be on the screen, people may not realize you’re working on something.) I have started wearing my headphones over just one ear with the other ear exposed, to signal to others that I’m open to talking if they want. I also learned that screen readers can help with focusing in on specific content; listening to just one thing can be easier than looking at multiple information streams simultaneously.
Second, using a screen reader does not have to be a chaotic experience. Despite the issues I faced at the beginning, using screen readers helped me relax during my vacation by allowing me some time away from social media and my email while I was learning. I had felt anxious about disconnecting, but I’m glad I did. Moderate disconnection gave me the space to work on a new skill while moving into a growth mindset. After a few days of consuming less media, so many ideas came to me.
Third, using a screen reader means heavy exposure to synthetic speech, so choosing the right voice is essential. I learned that the voice employed by the screen reader can really make a difference. I switched between four types of English during the challenge, and the variations helped me keep things fresh and prevented me from getting annoyed by too much of the same voice.
Fourth, going screen-free can open up the visual world in unexpected ways. As my eyes spent less time glued to a screen, I was able to notice small details, like a cute cat-shaped zipper pull on the bag of the person ahead of me in line, and the larger ones, like the beauty of snow and holiday decorations.

Advice for Future Challenge-Takers

Here are a few words of advice for sighted people thinking of following in my footsteps and taking a screen-free break.

  • Learn to use your computer without a mouse before diving into screen reader use. Keyboard navigation is available for nearly every function a mouse performs and it will cut down on the learning curve required for the whole screen reader experience.
  • Be prepared for your friends and family to be confused by your new strange behaviors and messages.
  • Don’t be afraid to take notes with pen and paper, even if you tend to lose paper the way I do. It can make life so much easier.
  • Enjoy non-computer entertainment, especially when you need a break from learning.
  • Try to be patient with yourself and persistent against the problems around you.

What’s it all for, Exactly?

Fellow sighted tech lovers may well ask why I put myself through this while on vacation, over and above the career development possibilities. Their confusion would make sense: I remember when I set the screen on my phone to go dark and I was really in for the project. It felt like a door slamming shut and made me really nervous. However, when I sent my first text after that, I felt amazing! It was worth it.
Screen readers are a vital part of the computing experience for so many, but those who don’t need them don’t typically understand what it’s like to depend on technology few people understand or accommodate. I hope that, by reading this guide, sighted people may be inspired to take a closer look at screen readers, how they function, and what steps can be taken to build a more accessible computing experience for everyone.
A final analogy that came to me during this time seems relevant here: Imagine that you run a business that ships shiny, fun gadgets to your customers. For a certain percentage of your customers, the shipments arrive without issue and they are happy. However, other customers open their packages to find that the labels have fallen off the buttons, the instructions have been replaced with a list of meaningless file names, and there is a bunch of extra junk in the box that makes it hard to find the actual product. These customers paid the same amount of money and are equal users in every respect except that some of them got this bad deal. Now imagine that instead of a fun gadget, you’re actually shipping out the tools people need to do their jobs or connect with loved ones. When web content is put up that isn’t accessible or new problems arise with an app or phone interface, it’s equivalent to sending out that terrible package and product. Imagine opening it on the first day on a new job or giving it as a gift to your grandmother. Do your research on this aspect of product design. Accessibility matters.

Dead Ends: 6 Battles I Refuse To Fight

I’m a fan of healthy debate, and since I can see grey in just about every conceivable area, I’m all for engaging with everyone about nearly every topic. However, I’m finding it progressively less useful to engage with certain types of people, who continue to pick fights with others about debates that should, in my opinion at least, have been retired long since. Some perspectives are simply too antiquated, inaccurate, or unconstructive to be worth examination, and today I’ll present a few of the arguments I’ve promised myself I will never become embroiled in again. Part of a healthy lifestyle is knowing which battles to fight and which are lost causes, and this is a list of arguments I believe we need to put to bed, once and for all.

1. Cane versus guide dog: travel is intensely personal, and any cane vs. guide dog debate needs to account for individual preferences, needs, and abilities. Guide dogs offer numerous advantages, but they are not the only efficient mobility tool. Some blind people don’t like dogs, dislike guide dog travel, feel more confident with a cane, and/or are unable to afford a dog. Additionally, canes offer their own advantages. You don’t need to feed, relieve, or plan your schedule around a cane’s needs, and the cane provides tactile feedback some blind travellers, like me, consider essential. So, however you might feel about it, please stop arguing with people about which is better. Instead, focus on the advantages and disadvantages of both, leaving it up to each blind person to decide for themselves. Blanket statements and definitive answers simply aren’t useful, so there’s no point in resorting to them.
2. The duty to educate: I have always valued my ability to educate able people, and am usually open to answering questions and spreading accurate information. Education is one of the primary purposes my blog exists, and was the original reason I began it at all. I don’t align myself with those who insist it is every disabled person’s duty to educate, though. If you enjoy it, and find yourself routinely annoyed by people’s ignorance, then you should certainly raise awareness and answer as many questions as you’d like. If you’re more concerned with going about your business unencumbered by other people’s curiosity, or if you just don’t like putting yourself or your ideas out there, by all means refrain from doing so. Ultimately, you are the only one who should dictate how you spend your time, so I hope people will eventually stop squabbling about duty and purpose and obligation.
3. Public versus mainstream education: I spent grade school and postsecondary school in mainstream education—that is to say, I attended publicly funded institutions and did not generally receive specialized education tailored to blind students. The only school for the blind in my country was too far away to be a viable option, and in any case I preferred to be integrated into the sighted world as much as possible. I’ve heard horror stories about schools for the blind. People talk about lowered academic standards, inadequate enforcement of social skills, abuse that went unchecked, and a serious lack of encouragement when it came to helping blind people prepare for independent living. By contrast, I’ve heard other students praise their schools, having learned valuable skills mainstream schools usually cannot teach, and being among people who understood them and their struggles intimately. My own experiences with public school were mixed. I had to balance the benefits of inclusion with the severe lack of resources my rural school was able to procure. All in all, I don’t think it’s useful or wise to argue back and forth about which type of education is objectively better. The reality is that the subject is too varied and too personal to debate properly, so while it’s fair enough to pick apart the merits of specific institutions, making general statements demonstrates a disregard for nuance that seldom does any good.
4. Sighted versus blind partners: I covered this topic extensively in previous posts, and that’s the last I really want to say on the matter. It’s all very well to discuss the merits of dating both types of partners. Blind partners are able to understand us on a gut level, which can be enormously comforting. Sighted partners are typically able to provide assistance, such as driving us around and helping us navigate unfamiliar areas, which is an awfully nice perk. I fail to see the point of telling fellow disabled people whom they should date. Regardless of personal preference, we shouldn’t be meddling in anyone else’s love life. Let people exercise agency, because goodness knows able people love to badger us as it is. Promote freedom of choice, and otherwise keep your nose out of other people’s romantic lives.
5. Language policing: this is another topic I’ve covered before, and once again, it’s an argument I refuse to revisit. It’s one thing to be sensitive to other people’s wishes and keep up with the evolution of language, but when you are describing yourself, do so however you see fit. No one—and I do mean no one—has any right to insist you should change or criticize you for using incorrect labels. You are in charge of your self-concept and identity. Don’t let anyone convince you that you’re “doing it wrong.” Everyone is entitled to their opinions, but that doesn’t mean you have to listen.
6. Doing blindness the right way: there is no such thing as “doing blindness wrong.” Really, there isn’t. There are harmful behaviours and unwise practices, but disability is just a personal trait. Just as there’s no right or wrong way to be queer or female, there’s no wrong way to be blind. That doesn’t mean you’re above reproach and should be insulated from criticism; part of a community’s job is to watch out for each other and call each other out, but anyone who tries to claim there’s only one way to live this life is hopelessly narrow-minded. They can share their definitions of a life properly lived, but you don’t have to care.


Do you find yourself sick to death of any dead-end arguments? Feel free to share them in the comments; I’d love to hear them.

“Go Play With Your Friends!”

“Meagan, what are you doing over here by yourself?”
The daycare worker stood over three-year-old me as I crouched by a wall, well away from the groups of laughing children. I remember holding a toy giraffe (which I was pretending was a pony), and babbling happily to myself, weaving some far-fetched tale or other to while the hours away. I raised my head reluctantly but obediently; I was loath to interrupt my highly-enjoyable game, but I was a relatively respectful child.
She waited.
“Well? What are you doing?”
“Playing.”
“Put that down and go play with your friends.”
It’s astounding, really, the level of clarity this memory still holds for me. My head is full of fuzzy childhood memories, but this one stands out. If I concentrate, I can still feel the cynical amusement her comment had provoked—an amusement that was distinctly unlike what a child ought to feel.
“I don’t have any friends.”
How could she not know this? Was she not paying attention when kids turned their backs as I approached? Did she miss the very public incident when a toy crate was placed directly in my path in the hopes that I’d trip?
“Yes you do.”
“No, I don’t.”
“Well, go make some then.”
As she walked away, my child self felt absolutely nothing but relief: I could get back to my giraffe—ahem, pony—without further annoyances.
What I find remarkable about this memory is not the underlying theme of social isolation and bullying. Bullying had tapered off almost to nothing when I went to grade school, I was extraordinarily lucky, but daycare was somewhat different. I faced relatively little direct confrontation—I was certainly never abused or put in real danger—but social exclusion was at its height. No, what I always dwell upon is how very unaffected I was by all of it. Kids are all supposed to crave a peer group, but for whatever reason my rejected social overtures didn’t faze me. I didn’t try very hard, and once I realized it was basically futile, I retreated to the safety and endless entertainment that could be found inside my own head. I was aware on some level that this made me different, but I simply don’t remember being bothered in any way by it.
I was not a socially starved child, generally speaking. I was forever pestering my elder sister to play with me, enjoyed the company of adults immensely, and had a huge, welcoming extended family to keep me company during gatherings. If I had the opportunity to play one-on-one with accepting kids my own age, I took it quite contentedly.
Despite this, my introversion seemed to be a source of ongoing anxiety for the adults in my life. Daycare workers, teachers, consultants, and all manner of others concerned themselves with my social development, no doubt worried that a disabled child left to her own devices would morph into a stunted mess. Their fears weren’t entirely unfounded, and my isolation did facilitate certain quirks it took me a bit too long to eliminate, but my intelligence, contentment, and overall growth didn’t feel impeded by my apparently-tragic lack of friends. At least, that’s how I tend to view it.
Frequently labeled antisocial and stubborn, I noticed that my personal preferences were considered partially or wholly irrelevant. This is true for many children, I think, especially when they grow up surrounded by people who fear they’ll turn out wrong, somehow. I don’t know that any adult stopped to consider that maybe, just maybe, Meagan was at peace with not having many friends, and that she’d make them when she was ready. I’m not sure anyone recognized that introversion and antisocial behaviour are worlds apart.
As I grew older, I did begin to amass a very small, very selective group of friends. I didn’t always choose adults’ perceptions of ideal candidates—that is, I did not necessarily gravitate toward popular kids. In fact, I tended to avoid them, and they likewise avoided me unless they thought I’d give them the answers to the homework that had just been assigned. (My studiousness was attractive to just about everyone in my classes over the years, meaning everyone wanted to sit next to me inside but scattered at recess time.) The steady friends I did have were a bit like me: introverted, slightly eccentric, and entirely content with being both. Throughout my childhood, all the way up to middle school, the refrain continued: play with your friends. Be more social. Don’t just stand by that wall all the time. Go play with these girls and those guys and that group over there.
Sometimes, the concern, which I know to be benign and not entirely misguided, got a little out of hand. Fellow students were ordered to play with me (please never do this to any child), and didn’t always hide their resentment over it. Others would allow me into their group briefly, but were just as happy as I was to see me go. Probably, if I’d tried harder, been chattier, been more charming, I’d have made progress, but it all came down to the inescapable facts: they didn’t really want me around, and I was in no mood to waste energy trying to persuade them otherwise.
Don’t get me wrong: I nursed my moments of loneliness, especially as a teenager. Sometimes it seemed as though having more friends would be an express line to a better life, within the confines of school, anyway. When I became a bit more popular in middle school and my social group got larger, I welcomed opportunities to experience new people and activities. When I got to university and was totally alone again, I felt hollow and far more desolate than I’d ever felt as an excluded child.
On the whole, however, I don’t believe my personal growth was much improved by the constant commands to be more outgoing. The social butterfly wings don’t suit me, and they never really have. I applaud the efforts of those who cared for me; I know they were aware of the risks inherent in an isolated, sheltered child, and I see the effects of this isolation in other blind people. Some of them can’t shake a pronounced awkwardness, even as an adult, and I’m grateful to have navigated that particular minefield fairly successfully. I owe much of that to the efforts of the adults closest to me, who were just trying to make me into the best person I could be.
These things aside, I believe my intense introversion, so often judged and found wanting, shielded me from so much of the drama and misery that are youth’s trademark. Other kids were worrying endlessly about who was out and who was in, but I was busy reading yet another book. Other children at daycare were fighting over toys while I sat safely in a corner, knowing my giraffe-pony was mine, all mine. My ambivalence toward my peers wasn’t always an asset, and it definitely got me into trouble a time or two, but it also insulated me from a lot of pain and self-doubt I really didn’t need. Childhood and teenage years are difficult for anyone, but I had separate challenges that meant I would have had precious little time to waste on being lonely anyway. I was way too concerned with a mental illness I did not understand and a disability I didn’t always know how to deal with to cry my eyes out over whether the girls on the tarmac would let me skip rope with them.
Today, I’m still an unapologetic introvert, though with far more friends and a much richer social life. I’m no longer content with total exclusion, and I spend way too much time these days agonizing over things I would have thought silly and worthless as a child. I like my life, and I like who I’ve become.
Still, once in awhile I appeal to that three-year-old I once was. I ask her to lend me her shamelessness and her practicality. I ask her to remind me that I can be my own best friend when the need arises, and that what other people think, well, it doesn’t always have to matter.
Don’t worry, introverts. You’re okay.

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.

Staying Sane In A Culture Of Outrage

Unless you’ve been living off the grid for the past year or so (and if you have, congratulations, you’re not really missing much), you’ve been inundated with rage-fuel from just about every imaginable quarter, at least on the internet. The tumultuous American election, the unrest in Europe, the conflicts in the Middle East—these have all snowballed to create feelings of despair and near-constant outrage. Sustaining these feelings for any length of time is mentally taxing, and I’ve seen this struggle in the disability community and, of course, in myself.
Shouldering my personal mental health issues has spurred me to devise strategies for staying sane in these troubled times. While everyone on and offline will have, I hope, found their own effective coping mechanisms, I thought it might be prudent to share some of my own. My goal is to help others, including those without disabilities, safeguard their sanity while continuing to be present online. It’s all very well to fight on the front lines, but we must remember to look after our well-being, no matter how guilty it makes us feel to do so. We’re no good to anyone or anything unless we care for ourselves, first and foremost.

Learn to Sit Down

If you’ve spoken about any issue on the internet, you’ve probably been told to “sit the f**k down” a time or two. It can be discouraging when people demand your silence, particularly if they claim to speak for and represent you, but they have a point.
One of the first things I had to accept when I worried for my mental health was that sometimes, I had to put down my torch and acknowledge that not every battle is mine to fight. I cannot possibly join every crusade, champion every cause, or address every issue, in the disability community and elsewhere. I’ve found that sticking to the conflicts that affect me most directly is the best way to ensure that my voice is heard and my views are based on accurate information and experience. There is no point getting involved in a dispute I know nothing about, and once I recognized this, my life got a whole lot calmer.
In addition to preserving my sanity, this tactic meant I didn’t inadvertently misrepresent or harm anyone else, whose opinions are much more valid than my own. What right have I to speak on behalf of those with autism? Wheelchair users? Those who are deaf and hard of hearing? None whatsoever, I’d say. I’m free to discuss their general rights as disabled human beings, but my personal experience is totally irrelevant in most cases. I’d be annoyed if someone with little or no experience with visual impairment presumed to override my needs, and I imagine others in the community feel the same way.
So, learn to sit down once in a while. It’s worth it, I promise.

Know your limits

The next thing I learned was that my capacity for absorbing rage-fuel is finite. You may have discovered the same. While some of us grow numb to it all, developing armour and forging ahead, others of us need mental health breaks. Stepping away from social media can be therapeutic in the extreme. More than once over the past year, I’ve had to unplug temporarily, just so I could function normally and live my offline life.
Here are some signs to watch for if you think you might need some time away:
• Your heart races at the very thought of reading yet another inflammatory article or Facebook post, but you can’t seem to stop clicking on them.
• You find yourself jumping into strangers’ conversations at the smallest offence, determined to set them straight.
• You pick fights with friends who disagree with you, despite the fact that it achieves little and only ends in resentment or awkwardness.
• You find yourself under constant stress, especially when surfing the web.
• You’re losing sleep over the opinions of strangers, even when those strangers are ill-informed and unworthy of your time or energy.
• You’re unable to concentrate on your job, your relationships, and other infinitely more important parts of your life.
If you’re encountering any of these issues, back away, at least for a few days. Your energy is precious, and if you’re anything like me, you can’t afford to waste spoons on fruitless anger. I can just about guarantee you’ll return to the fray feeling more tranquil, and the energy you do expend on the things you care about will yield better results. Try it.

Be Open to Changing Your Mind

Personal growth is underrated in this polarized landscape. If you’re on the left, you’re expected to stay there under all circumstances. If you’re on the right, the same is expected of you. No matter where you fall on the spectrum, people demand that you pick a side and remain there. Nuance is so often abandoned in favour of toeing the party line, and this can be enormously stressful.
Remember that your principles, while they’re admirable, are allowed to evolve over time. If you receive new information that proves you’re wrong about something, be at peace with changing your perspective and your position. You may consider some beliefs to be inviolate, I know I do, but flexibility is its own reward. Keeping your mind open—but not too open, you don’t want to be swayed by every breeze—is vital to your growth and development. My own views have shifted over the years, which is reflected in my blog, but I’m not ashamed of it. All it means is that I’m capable of adapting to what life teaches me.
If communities as a whole, and individuals in particular, are totally closed to change, they won’t survive for long.
Don’t let anyone accuse you of betrayal or flip-flopping. Adjusting your beliefs and values according to new information you gather is normal and healthy. Don’t let anyone convince you otherwise.

You Owe Nothing to Anyone

Finally, keep this close to your heart: you do not owe anyone anything. You are not duty-bound to educate. No one should try to force you to act on any given cause. Respecting your limits and beliefs should be your highest priority. It’s worthwhile to advocate, and I prefer that people choose the path to education if they insist that nondisabled people behave properly around them, but you should never feel as though you have to treat every situation as a teachable moment. If you try, you’ll find yourself exhausted and frustrated. You might even snap one day and bite some innocent person’s head off. This has happened to me, and I recognized it as a signal that I could not be a perfect educator at all times. On days when I just don’t have it in me, I need to go about my business and forget about perceived duties to my community.
Furthermore, you don’t owe anyone a debate or an explanation. If someone seeks an argument with you, by all means engage them, but end the conversation once you’ve had enough. There are many resources out there. Point them toward those and withdraw before you become unduly upset. Let no one tell you what you owe them.


I hope these tips will help you. If you can, please pass them along to anyone you know who might be staggering under the weight of all they are reading and sharing. Tempting as it may be to steep ourselves in this culture of outrage, we must learn to practice self-care and cultivate self-awareness. Only then can we find balance.
Good luck in all your noble endeavours. Do me one favour though, and rest now and again.