self-discovery

My Best, Most Exhausting Self

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I wandered out of my bedroom last week, dressed casually for a walk to Starbucks, only to have my husband point out that I’d colour-coordinated my socks and my hair elastic. Both were pink, not that I’d noticed, and the observation was sitting funny with me. When was the last time I’d intentionally colour-coordinated anything? How long had it been since I’d bothered to choose an outfit, rather than slipping into what was most functional? I couldn’t remember, but it had been several months at least, maybe longer.

After my workplace sent me home in March of last year, I made a noble but short-lived commitment to dress professionally, groom to business-casual standards, and pretend I was going into the office every day. I soon lapsed into sweats and tank tops like almost everyone else, assuming things would be back to normal in a few weeks and treating myself to a little well-deserved sloppiness after a lifetime of self-consciousness. What would be the harm?

A year later finds me as casual as I was then, largely unaware of what I’m wearing and which coloured elastics are holding my artless ponytails together. I’ve allowed my hair to grow to my hips and beyond. My jewelry collection is literally gathering dust. My work wardrobe is wrinkled after a year of sitting unworn on hangers that have been pushed to the back of my closet. I think my fancier boots and heels are in a box somewhere; I’ve moved and have not yet unpacked the relics of what feels like a former life – a life in which I left the house regularly and cared what people thought of me.

This new carelessness would have been unthinkable before COVID-19 shuffled my priorities. As a blind woman, I have been conditioned from the cradle to obsess about how I appear to others, by well-intentioned people who wanted the very best for me. Atop the default pressures of feminine presentation—look young, pretty, unblemished, controlled—every trusted sighted person in my life reminded me to remain vigilant about my looks, and to defer to other people’s aesthetic preferences.

My clothes were selected for me, and I was not encouraged to develop my own tastes or sense of style. How could a blind person be qualified to develop such things? I straightened my hair for years because it was fashionable, even though it ate an hour of my life every single day and I didn’t enjoy the dry, staticky outcome. I submitted to makeup before musical performances and special events, but it irritated my skin and I didn’t feel I needed it. I worried constantly about things I couldn’t visually verify for myself, consumed by the fear that if I didn’t embody a narrow put-togetherness, people would never see past my disability.

From a shockingly early age, I was warned that a sighted world would expect me to be disheveled and clueless. I must not play into those stereotypes, for my own good and the good of blind peers. To seem as sighted as possible was to be respectable. Didn’t I want to be respectable?

As an adult, I gained more autonomy. I started choosing my own clothes and paying a friend to design jewelry according to my personal tastes. No anxious presence was hanging over my shoulder, insisting I look unhealthy without makeup. I haven’t straightened my hair in years, and hairdressers are always exclaiming over how healthy it is. (Refusing to scorch, dye, or saturate it with product will do that.) I followed dress codes where appropriate, and I genuinely enjoyed formal dress, but overall I embraced the intoxicating adult privilege of deciding for myself what I would and wouldn’t do to look a certain way to others. I got to decide that unless makeup and fashion and messing with my hair brought me joy, unless they were part of my authentic self-expression, I wouldn’t force myself to do them. Sure, I wore dramatic makeup on my wedding day, and I loved an excuse to pretty up, but I was no longer spending hours getting ready just to go get the mail.

Before the pandemic, I’d have told you I was being my best self. But my husband’s throwaway comment about my spontaneous colour coordination made me realize that my best, pre-pandemic self, while slightly more emancipated, was still a little exhausting. A lot exhausting, if I’m honest.

She worked very hard to be acceptable to the world, she worried about the opinions of people who had no power over her—who may not even have noticed her, in fact—and she expended her already-scarce energy coordinating her hair elastics with her necklaces with her shoes and so on.

She shied away from bright colours because what if, God forbid, she picked two things that clash a little? She dreaded the wealth of makeup tutorials for blind people, fearing the new baseline standards for blind womanhood would soon include excellent makeup skills, on top of all the other stuff she hadn’t yet mastered. She placed her body mass index above her health and fitness, because being visibly disabled was only bearable if the rest of her was without flaw, and because internalized fatphobia was a demon she hadn’t conquered yet.

So she was more autonomous, yes, and bold in her choice to rarely wear makeup and let her eyebrows go a little rogue. But was she free?

Oh no, dear friends, I see it now. She exchanged one type of restrictive lifestyle for another, told herself she was in charge, and called it good enough. It took a very different type of restriction to nudge her to the back, letting me step forward and realize that my ideal self never existed. Chasing her was only going to make me tired.

Staying inside a lot and living in sweats has not been my idea of a good time, and I do look forward to wearing dresses and skirts and blazers again. However, I’ve been confronted with the reality that the things that most need my attention are not, and have never been, my outer packaging. I should be more focused than ever on becoming a better cook, traveller, artist, friend and community member. Resilience and confidence will take me so much further than obsessive colour coordination anxiety. No one liked or admired me for my fashion sense, though I don’t do too badly on that front when I try. They liked me as a writer, musician, and loving human being, traits that will survive anything, even a pandemic.

In moments when the world feels like it’s ending, you want the confident, resilient people by your side. You aren’t going to care whether their hair accessories match their socks. You’re going to care about their ability to keep you safe and move things forward. More than a year into this, I feel like I’ve shed so much, and discovered even more. I can keep myself and others safe. I can move things forward. Everything else is just fear and marketing.

Who I am, in this difficult moment, is the only self with whom I ought to be concerned. She’s the only one who actually exists, and I like her for her increased interest in a more just world where a pandemic wouldn’t mean preventable death on a grand scale.

The thing is, when she’s not obsessive and fearful, when she’s working hard on things that bring real value, I quite like this new self. I like her renewed relationship with art for art’s own sake. I like her ability to do well at her job, no matter what she’s wearing while she does it. I like her practical acknowledgement that while we all fit ourselves into boxes to maintain a functioning society, she gets to choose whether to lose sleep over how well she is fitting inside hers. I like that, for the first time in decades, she is neither exhausted nor exhausting. While crises often bring out the worst in people, she has stumbled, quite by accident, upon her best.

Eventually, I will go back to my former life, the one where what I wear and look like does matter, regardless of what I might wish. I will start paying more attention to my appearance again. I will begin slotting myself back into mandatory boxes, just as before. It’s inevitable. Some form of confinement, in my line of work and way of life, is inevitable.

But obsessing, fretting, self-diminishing are optional. They always were, and I don’t think they will be useful for whatever is coming next. Faithful as they’ve been, familiar as they are, I think I’m ready to get to know myself without them.

The Blind Girl Who Sings

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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

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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 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 can hear is an ominous thumping sound as the door thwacks repeatedly into something as it goes round and round at what I consider an alarming speed.
I am open to trying it out, particularly since I’m filled with new resolve and I have an O & M instructor with me once again. However, as she describes the procedure, which involves me “sticking [my] hand in there so the door can hit it,” I balk a wee bit.
By “balk,” I mean I stand there for what must be 10 minutes, coming up with all the reasons I definitely cannot—will not—attempt this.
Finally, I gather all my courage and approach the door, only to have it hit me squarely in the face.
A little shell-shocked, hiding treacherous tears, I retreat and try to regroup. Meanwhile, the O & M instructor, her blind friend, and my sighted friend stand by just as patiently as before, acting as cheerleaders and accountability officers in equal measure. Surrounded by all the (positive) pressure, I finally go for it.
As I lean heavily on the door and follow it in a dizzying circle, one of my blind companions runs along behind me, shouting jubilant encouragement. It is 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 on this day, that damn door is 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.