We, the Persons

It happens more often than you’d think. I’m scrolling through a piece of writing relating to policy or human rights, and I see it: “persons with disabilities.” It’s not something I find in much mainstream writing, but in the non-profit and government worlds, it’s ubiquitous. Though I’ve come to expect it, it always stands out to me in the most distracting way. It conjures other phrases, like “persons unknown” or “persons of interest.” It’s clinical and cold. It feels archaic and, especially outside the context of law, dehumanizing.

It seems like everyone else gets to hang out at what passes for the cool table, under the “people” umbrella. (Boy, that bar is high.) We don’t typically talk about persons of colour, or LGBTQ+ persons, or persons with low incomes. Governments don’t commit to supporting “working persons.” Politicians don’t address the “persons of this great country.” Democracy is not “by the persons, for the persons.” That would sound odd, if not incorrect. At best, it would be out of place, and give people pause.

I’m not usually a splitter of hairs when it comes to small linguistic details, unless I’m wearing my editor’s hat. I tend to think that while language has immense power, the sky isn’t likely to fall if someone refers to me as, say, “visually disabled” versus “visually impaired.” I may have a preference, but it’s a personal one, unlikely to inspire whole blog posts. You say tomato, I say “Who cares?”

There is something about “persons with disabilities” that continues to annoy, no matter how many times I come across it. Unearthing the phrase buried in legislation is one thing, but when I see it in a recent piece of writing, I can’t help but shake my head. Why haven’t we joined everyone else? Why have we yet to gain full “people” status? Why are we still being referenced, in a surprising number of documents, using a term that is jarring and isolating for no good reason? Are we destined always to remain in a medicalized category of our own, somewhere just to the south of “people?”

It really is a very minor detail, I know. Most people will look at “persons with disabilities” and not even notice the strangeness of it. Others will notice, and not care. I’m sure many people with disabilities (see what I did there?) will read this and shrug. There are bigger fish to fry, certainly–more important quibbles to discuss, definitely.

But my favourite thing about minor details is that they are so simple to fix. The complex issues are hard to solve, and I’m in no position to do much about any of them. What I can do is make sure “persons with disabilities” never creeps into my own writing. I can encourage my clients and coworkers to start thinking of us, and representing us, as a group of people much like every other. I can point out how bizarre it is to cling to such an outdated term, and hope that it will one day become a rare one.

If you’d like to see “persons” with disabilities become a relic of a society that really did view disabled people as less-than, instead of a phrase we cling to with bewildering obstinacy, you might consider joining me in this modest quest. I’d be more than happy to hear about your progress, pushback and all.

Advertisements

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.

Trepidation and Triumph at CSUNATC2018

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

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

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

“Let’s get oriented!”

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

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

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

“Just trust yourself.”

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

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

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

“One more time before you go?”

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

Letting Go Of Normal

Don’t talk about disability. Don’t write about your blindness. Don’t mention anything that makes you different. Feel ashamed of your cane. Never disclose. Blend in. Hide.
Not so long ago, I lived by these rules, and most troublingly, they were of my own making. I’d endured my fair share of awkward stares and been asked to conceal my cane in photographs, but on the whole, I was not discouraged when it came to simply being me. I was blessed with a relatively accepting community that understood blindness was a part of me (but not the only part), and never required me to pretend otherwise.
Yet, I felt an overwhelming desire to “be like everyone else.” I suppose most young people seek a sense of belonging, but this ran much more deeply than a youthful herd mentality. I was always a bit of a loner, so wasn’t as influenced by popularity contests as my peers.
Instead, I pursued a much less attainable goal: I wanted total erasure of my disability. Seeming “too blind” was a mark of failure. I’m not entirely sure where it came from, but a persistent sense of shame dogged me everywhere, and while I tried to combat it at different points and never resorted to refusing to use a cane, I fought my essential differentness just as fiercely. It didn’t show much, because on some level I knew it was foolish, but I carried a lot of internalized guilt and unhappiness, and the voices in my head told me to erase any traces of perceived inadequacy, which included blindness.
The way I saw it, disability was nothing but a stumbling block. If I was sighted, my life would be ever so much more fulfilling. (I’ve grown a whole lot in the last five years. It’s really rather astonishing.) I fervently believed that disability stood in the way of everything I lacked: a job, a boyfriend, general acceptance, and the right to be “normal.” Blindness certainly interfered with these goals, but assigning sole blame to my broken eyes was far more disabling than acknowledging there might be other factors at play.
When I was introduced to other disabled people who were content with themselves, the problem worsened. I was resistant at first. Why is everyone yelling about disability? Shouldn’t we be stressing how normal we are? Why aren’t we working harder to blend in?
My refusal to be identified with my disability began to permeate my writing, my self-image, even my relationships. I resented it when I needed help, and avoided writing about disability, even when encouraged to do so. I went on and on about how I wasn’t “like other blind people.” No no, I was much more committed to assimilation, and far more aware of my place in the sighted world. All these people placing disability at the forefront of their lives had it all wrong. The key to a better life for us all is to be more like able people! Why don’t they realize this? Why?!
I eventually had to come face to face with an uncomfortable truth: disability is not the only or most important part of my identity, but it matters, and it deserves to be acknowledged. Further, I was forced to admit that pretending my disability didn’t exist, and only referring to it in a self-deprecating, apologetic way wasn’t helping anyone, least of all fellow disabled people. The path to equality did not lie in erasure, but in acceptance. How could others accept us if we did not accept ourselves? How could others understand us if we didn’t open up? Why did it feel so wrong to express myself in the context of a disability I live with each day?
Of course, I still feel squirmy when my blindness is brought up in unrelated discussions. I dislike talking about it in job interviews, at the doctor’s office, in cabs, on the bus, on a street corner. I grow weary of proving that I’m more than my blindness, and that my disability doesn’t hamper other forms of self-expression.
On the other hand, I now feel at ease with bristling when someone suggests I put my cane out of sight. I make blind jokes with joyful humour rather than with shame disguised as mirth. Asking for help is still difficult, but I take it in stride rather than cringing with embarrassment. I speak up. I stand up. I don’t hide anymore.
No, blindness will never be the chief focus of my life, even though I consider myself a disability advocate. I’ll always frame my identity in a much more complex way than as “blind girl.” I am a blind girl, yes, but I’m also a writer, and a communications specialist, and a friend, and a lover, and a daughter, and a sister, and a musician, and a bookworm, and, as my Twitter bio reveals, a fierce defender of the Oxford comma.
All this being said, I hope I will never again believe that the best way forward involves concealment and shame and the quest to disappear completely. I’ve found that, in my own life at least, asserting my humanity is best accomplished by embracing my differences rather than shunning them. The world is far more diverse than many would think, and I’m merely a part of that glorious tapestry of diversity. I don’t have to be proud of my disability, or view it as a superpower, or “embrace” it. No one has to do anything in particular; isn’t that the whole point of our advocacy, in the end? Aren’t we all just focused on giving everyone equal choice and license to express themselves however they wish?
So, talk about disability, as often and as loudly as you want (or don’t, that’s okay, too). Write about your disability. Mention anything that seems relevant, even and especially if it makes you different. Never feel ashamed of your cane or service dog or wheelchair, or any other symbol of your disability. Disclose, if you think it’s wise. Don’t blend in unless you really want to. Most of all, never hide. Whether you live in the spotlight or in the most ordinary of circumstances, never hide.

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.

My Words Are My Own: Language Policing In The Disability Community

“Don’t talk about yourself that way!”
“You shouldn’t devalue yourself!”
“You should always use person-first language. Do not put your disability before your personhood.”

I remember the first time I encountered the language police, and experienced the odd sensation of having my own words criticized and found unsuitable. It’s one thing to be careful when addressing other disabled people and the community as a whole; words are powerful and should be used with care. Even so, I’m not sure I’ll ever get used to being told that the words I use to describe myself are objectively wrong.
If you are at all familiar with the disability community, you’ve probably seen an article or three about the importance of person-first language: “person with disability” supposedly places the person before the disability, preventing people from letting disability define them in any way. (The policing of individual identities has long puzzled me. What is the deal with that?)
I’m perfectly willing to address and describe others in the way they prefer. Respecting individual preferences is a practice I value very highly. Autonomy is a luxury we are so often denied. Far be it from me to take it away from someone else, especially if their voice is not as loud as my own.
However, when it comes to my own identity and disability, I consider my words and preferences to be above everyone else’s. I do not say this out of arrogance or dismissal of the beliefs of others. My ears are always open, and the way I define myself has shifted with time and experience. That said, if I want to call myself visually impaired instead of partially sighted, disabled instead of differently abled, or normal instead of special, that is my prerogative. I do not feel that anyone has the right to dictate how I ought to view myself, particularly not on my own blog. (Besides, I find “person with a disability” clunky, especially when it comes up multiple times. It’s just quicker and easier to say “disabled.”)
For the most part, this misplaced desire to correct and police my language comes from misguided, well-intentioned able people, who do not understand that just because that one blind guy they know doesn’t mind being called special doesn’t mean they’re at liberty to assume everyone feels that way. I’m constantly running into the frustrating notion that disabled people’s wishes are not as important as nondisabled people’s. I am angered and dismayed by the idea that they know better than we do, and it seems that even those with minimal knowledge of the community are willing to tell us we’re wrong.
Surprisingly, though, some of this policing comes from fellow disabled people, who seem to think that I am somehow harming or degrading myself by using terms they deem offensive. Offence is ultimately an individual experience, and I do not believe anyone can seriously expect to know what should offend me and what should not.
I personally find euphemisms like “differently abled” and “handicapable” repugnant. I see them as proof that society still wishes to tiptoe around disability, remaining unable to fully accept and make peace with its existence. Branding me special or differently abled takes away from the fact that my condition is basically just a hardware failure. No, it does not have to define me, and no, it does not consume my whole life, but yes, it’s a meaningful part of me—one I’ve learned to live with in relative contentment. There is no need to gloss it over or refer to it using roundabout language designed to make able people feel better about it.
Please do not police my language when I describe myself. Please do not presume to know how I should treat my own identity. Please do not shame me for the way I choose to look at myself and my place in the wider world. By all means, let me know your perspective on the best terms to use in general, but do not take it upon yourself to set me straight when I’m talking about myself. When it comes to my blindness, and mine alone, I know best.

Chicken Soup For The Nondisabled Soul (And Why You Won’t Find It Here)

Along with being asked why I’m so angry and negative, I’m also advised, by able and disabled people alike, to be more positive. Sure, I’m allowed to write about exploitation and discrimination, but why am I not serving up more feel-good, inspirational content? Where’s the comfort food? Where’s the acknowledgement that the world is, at its core, full of decent people who just don’t understand me? Where?!

I know what so many people want: they want chicken soup. They want brief, digestible content that reminds them it’s not all bad and that life is essentially good, no matter what. People certainly enjoy rage-fuel, and my passionate posts receive far more attention than my sweet little gratitude pieces, but there is still, it seems, a demand for what we in the disabled community lovingly call “inspiration porn.” You know the stuff—content that portrays disabled people in a light most pleasing to the nondisabled eye. In these pieces, we are courageous, steely individuals with more guts and gumption than anyone else would ever need (and the drive to use them). These pieces highlight inspiring people who have achieved ambitious heights, shattering expectations with an appealingly musical crash. They are high-powered athletes, successful entrepreneurs, survivors of devastating illness and injury, or astonishingly talented superstars. They have “overcome.” They have “transcended.” They have “made it.” Life as an everyday (and unbearably boring) disabled person is a battle, and they have “won.” The rest of us? Well, nobody really wants to hear about us unless we’ve been thrown out of a restaurant for having a service dog, or been paid less than minimum wage by Goodwill. The stories the public seems most attached to are the ones where a disabled person is either beating the odds in the face of adversity, or standing proud and unflappable after shameful mistreatment.

These reassuring bowls of chicken soup are not just favourites of those with no disabilities. They’re also beloved by many in the disabled community, who are convinced that the only right way to be disabled is to reach newsworthy goals. There’s only one acceptable narrative, and if we don’t fit neatly into it, we’re doing it wrong. The only way to get the world to care about how we are mistreated is to uplift them. Make them admire us, and after that, maybe they’ll come around to respecting us as well. You know, eventually.

I like a good story as much as the next person. I’m proud of my disabled peers, who really do work very hard and yield impressive results. I admire and respect their strength, even though I know they wouldn’t have to be so strong in a different, more accessible world. I laugh and cry with them, exulting when they succeed and commiserating when they fail. I share empowering stories when they do particularly well, so that others will know they are more capable than many might imagine. Inspiration is not, in itself, toxic, and positivity in moderation is indeed excellent nourishment for anyone’s soul, disabled or otherwise. The blog has been, I hope,  a vehicle for empathy and understanding as often as advocacy and education.

We need to be vigilant, though, because it’s so tempting to conform to the narrative of disability I discussed earlier—the one demanding we remain appealingly brave and heroic at all times. We already know that living our lives does not necessarily require heroism, and we also know that we deal with disability because there’s no alternative, not because we’re superhumanly strong. The public doesn’t know that all the way down, though, not yet. If we don’t pay attention to how we are portrayed by popular media (and by each other), we will inadvertently place strain on ordinary disabled people simply trying to live their lives.

Not every disabled person is brave at all times. Not every disabled person will soar to new, hitherto unexpected places. Many of us will stumble, and fail, and give up, at least temporarily. Many others of us will live quietly and contentedly, just as the majority of nondisabled people do. We need to remember that it’s okay to stumble. It’s okay to falter. It’s okay to break away from the inspirational mantras circling in your head long enough to remember that you are not obligated to feature in the Huffington Post. Your life is meaningful because it is yours, and is not made less meaningful if you never break a glass ceiling or awe the masses. Plenty of people go through their whole lives without doing anything of note (I expect that will be my own lot, and I’m okay with that) and they’re still perfectly happy. You deserve an accessible, welcoming environment whether you’re “making a difference” or going quietly about your business. Our deeds do not render us eligible or ineligible for decent treatment. Having a disability or illness does not have to shape your personality or desires. Being brave and strong should not determine whether you deserve the struggles you’re up against.

Reach for the stars, if that is what you believe you should do. Don’t succumb to the doubts and misgivings of others. I’m the last person to limit you. While you’re aspiring, just keep in mind that you don’t have to function as living chicken soup. If you want to be ordinary, if you feel too exhausted to be strong at all times, or if you fail spectacularly, know that it’s an acceptable circumstance and, while you can always get back on the horse, you don’t need to be inspiring while you do it. If you need to cry, to rage, to crumple, please do. Gather your support system close and let them carry you for a moment. You’re allowed.
In short, you do you.

Looking for chicken soup? Sorry, I’m fresh out.